Sunday, December 26, 2010

My Pounding Heart

The day finally arrived. Today we would get a sneak peak of the babe growing in my belly. I was anxious. As I climbed onto the table and felt the jelly squirted onto my belly, I found myself thinking, "Breathe. Just breathe." Rob, on the other hand, could have dozed off on the small couch in the exam room (which made me jealous!)

As the technician began her exam, I found myself relaxing. She was a wonderful tech who enjoyed her job. She was talkative, which made me more comfortable. One of the things I had been particularly nervous about when I had thought about this appointment were the doctors I would see. First off, the ultrasound was being done in the "Genetics Ultrasound Suite" - which was just unnerving. Second, I found out I was being treated as a "high risk pregnancy" - the pregnancy itself wasn't high risk, just the kids I seemed to birth! Third, in the ten years since Dylan's birth, I had met a lot of doctors, many who had hideous bedside manner and were often down right rude and obnoxious. Over the years I have become numb to most of it, but I am pregnant and emotional! The tolerance I have built over the years has become nearly non-existent during this pregnancy and I am constantly being challenged by the Lord to hold my tongue and be Christ-like.

Shortly after the ultrasound began, the perinatologist came in and introduced himself. Once again, I was put at ease. He was a gentle, soft-spoken, friendly individual who seemed to genuinely care about why we were there. As he asked questions about our other children and their diagnosis, it was done in a "non-robotic" manner - always a welcome relief. Sharing our family history can be quite the task!

As the ultrasound progressed, the tech verbalized her frustration that the sweet boy in my belly wouldn't keep his right hand open - he was determined to keep it in a fist. She also voiced that while she had taken a measurement at the neck numerous times, it was consistently measuring "just outside the normal range". My heart began to pound. I was unsure of what the hand-fist issue was, but I knew exactly what an inappropriate measurement at the neck could mean.

Before the ultrasound tech and perinatologist could explain their discussion, they were called out of the room briefly too another ultrasound where further assistance and expertise were needed. While we were alone for just a few, short minutes, Rob asked what my thoughts were. I shared my suspicions and informed him that the neck measurement was generally considered a "soft sign of Down syndrome while in utero", but that clarification was needed in regards to the hand.

When the docs returned, they explained their findings. Overall, the baby looked great - his heart was perfect, as well as all other internal organs. However, as I had suspected, the measurement at the neck was just outside the normal range - one of the seven soft signs of Down syndrome. In addition, our sweet boy had opened his right hand a few times, but did so very quickly, making it difficult to verify their concerns. It appeared that although all of the bones of the right fingers where present and appropriate size, there was a possibility that the little finger and the ring finger were fused together. The perinatologist said that the only way to confirm the Down's would be through an amnio, which he knew we were against. In regards to the hand, it wasn't uncommon for babes at this stage of development to act in this manner, but they did have to inform us that when our boy was born, there was a chance that these two fingers may be fused together with extra skin. If so, we would have to decide whether or not we wanted the fingers separated. It would be a simple procedure, but still something that we may face.

My heart was still pounding as the ultrasound wrapped up, but the pace seemed to be returning to a normal....just at a snail's pace. Rob and I left the office, sharing our thoughts openly and honestly. We were relieved that the anatomy of our boy was healthy. On the other hand, there were still unknowns. Honestly, we joked and laughed. Had we really thought we would go to that appointment and get news that our child was picture perfect? Who were we kidding? We are the Stewart Family and there is always something...or at least the potential of something. It just seemed to be God's way of keeping us dependent on Him. There was no question we were annoyed. Everyone we knew - friends and family - were aware of this appointment. Over and over again they had all said everything would be fine - no way would the Lord put us through more. But here we were....again!

I sighed. I had no desire to explain potential defects. The thought alone overwhelmed and exhausted me. It was actually one of the key reasons why we did not share with immediate family that Savannah might have had DiGeorge syndrome - it was just a maybe and we simply didn't have the emotional stamina to share about something that may or may not be present. Maybe it was selfish of us, but we had needed answers prior to talking about "what if's" - and looking back, I know we made the correct decision. However, this time around, it wouldn't be that simple. We would need to share. Many people were praying specifically for this ultrasound and the things that it would show.

The Lord was clearly asking for our undivided attention and patience. He was challenging our faith and the desires of our human hearts. The days and months to follow would be rocky ones, but once again we had each other. Even more importantly, we were beginning to only see one set of footprints in the sand.

Monday, December 20, 2010

To Be Human

Most expectant mothers look forward to the "big" ultrasound that is typically done during the fifth month of pregnancy. I used to be one of them. Unfortunately, with each passing pregnancy and excessively long ultrasounds, the joy had faded. These feelings have been especially strong during this pregnancy.

I know all the percentages and have done mountains of research on each of my children's various diagnoses. Yet, as my fifth "big" ultrasound was approaching, I must admit I was a ball of nerves. I wouldn't exchange any part of our life. It's far from perfect and certainly complicated and challenging, yet it's the deck of cards I was dealt and I've embraced it. No, I don't always enjoy every card I'm given and how they play on one another, but with each hand I'm dealt from this deck, my relationship with Christ grows in ways I never imagined.

Since becoming a mother of a special needs child, I have met a wide variety of people. I have been exposed to forms of disability and heartbreak that are unthinkable to most around me. My family as a whole has also been exposed to many of these same individuals. I often find myself thinking, "What do I have to complain about? What these other folks are dealing with is so much more complicated than the diagnosis my children carry with them."

Meeting these amazing families along my journey as a special needs mama has turned my world upside down in the most amazing way. Yet, as my ultrasound approached, they were also the individuals that consumed my thoughts. I thought of the diagnosis they had been given, the years of turmoil they had faced and so much more. The bottom line is that I realized just how much I knew about birth defects and everything that went along with each one. Some of the things I've seen are scary - not the individual with the disability - but the complications that can arise as a result of the disability, both medically and developmentally.

With the exception of Rob, explaining these feelings to those around is nearly impossible. Just as there are aspects of other people's lives I will never be able to relate to, it is the same with the life I lead. As I got closer and closer to my "big" ultrasound, I was a train wreck. There is no doubt the Lord was testing my faith during this time. When I sat down at the computer, it took everything in me to not research various special needs. I knew this was Satan at work. I was scared, there was no doubt about that, but I held the power of how much I was going to let him in. I'm human and have fears - but only I can decide who I'm going to depend on during these moments.

It was difficult to walk away from the computer in those days just prior to the ultrasound. When I found myself wanting to research this or that, I forced myself to grab my children and hug them. I would look into their eyes, especially those of Dylan, and remind myself that they were each created by Him, in His image. Each and every child that I bore was being born for a purpose - to be a vessel of the Lord - and as His vessel, regardless of their genetic strand, was His definition of perfection in the moment He allowed their heart to beat.

Sunday, November 14, 2010

Family Portrait

I doubt there is a mother around who doesn't want a beautiful family picture. Pictures are the only items we have from our past. They are the snapshots of the joy, laughter, love and even struggles each and every family faces. I am no exception - I want a big, beautiful family portrait displayed in my home, so that I can remember more clearly the various stages of our lives together as I age and ultimately forget those moments in time.

Well, I'm blessed to share that we have a wonderful friend who is an amazing photographer. She is a wife and mother herself, so she understands the importance of capturing these wonderful moments. But she also knows how difficult it can be - and our family is no exception! Not only are we a family with young kids - but we've got four (soon to be five!) kids, one of them being that handsome red head of ours who can be especially temperamental. The icing on our family cake is Yoko, Dylan's service dog. That is a lot of variables when trying to get a decent family portrait!

Our dear friend never ceases to amaze me and always gets beautiful individual or small combinations of pictures of our kids or Rob and I with the kids. We've had a few decent family shots, but nothing "over the top". Someone has their head is turned, a strange face is being made or a child is holding an item that is less than desirable to be in the picture. Yes, these are the things that make a picture a picture, yet the desire to have that picture perfect family portrait always seems to hang overhead.

This year was no exception. I was determined to get that family photo!! So off we went to a fun park, where we hoped we might just snag that family portrait. At moments, the kids were all smiles...then seconds later there were tears and, of course, attitude. I took a deep breath and exhaled slowly, telling myself that when our youngest was about ten, our chances HAD to improve. Until then, all bets were off.

We had a blast during our family pictures, even if we did leave exhausted and knew pizza and ice cream were on the menu for that evening. I was confident our dear friend had gotten some great shots - she always did - but the prospect of a GOOD family portrait had seemed to disappear shortly after she began taking pics - just too many variables that didn't seem to be meshing. It was what it was - and I was okay with that. It wasn't ideal, but I shrugged it off. Obviously, Dylan is always the wild card when it comes to pictures. It's all about bribery and manipulation and today had been no exception. We played the Dylan game of "If you do this, you can earn that" for nearly an hour and a half. My brain was exhausted. I couldn't even remember what he'd earned and not earned by the time we were done!

A few days passed and our proofs came in. I was in tears. Our amazing photographer had gotten a BEAUTIFUL family portrait! I was speechless and literally sat at our computer and cried. It was completely unexpected! I was also stunned to see just how big my pregnant belly was - which made the picture that much more complete!

There are moments I want to throw in the towel and not even attempt doing particular things with our family - in a large part due to Dylan. It's challenging, complicated and exhausting. These are the days when I simply don't want to fight the battle, but know that I should. Some things have gotten easier with time, other things have become more difficult. I never know what to expect, but this successful family portrait was a reminder to never give up and too keep on fighting, even when every indication is pointing to a disaster.

Sunday, November 7, 2010

DiGeorge Syndrome, Part 2

The phone was ringing. I jumped to my feet to grab it. Greg and Savannah were both napping and I didn't want a ringing phone to change that! As I picked up the handset, I glanced at the caller ID. I'm certain my heart skipped a beat because I was 99% sure it was the Kaiser genetics department calling. I knew the next call that I would receive from them would be with the results of the genetic testing that had been done on Savannah.

In just seconds, thoughts of all kinds flooded my mind. Would she have DiGeorge syndrome? I shared the possibility with a few individuals and when they asked what my "mommy gut" told me, I said I honestly felt there was a 50-50 chance. Our family seemed to beat all odds...and not always in the preferred this just seemed to fit our bill of kids.

I also felt at peace. Each of my children belong to God and, while I had no desire to deal with yet another diagnosis, I did not fear it, nor was I angry. As that thought came and went, I answered the phone. It was the the genetics department. The geneticist began to speak and then quickly said something along these lines: "Sorry, before I go any further, Savannah does not have DiGeorge syndrome." She continued to speak and I heard bits and pieces, but in my head all I could hear was those words, over and over again: Savannah did not have DiGeorge syndrome.

I do recall the geneticist commenting about the test that was run on Savannah. It was not a test that she requested on a regular basis. In the few years that passed since she last requested that test, it had become more thorough. In fact, Savannah's genetic strand appeared to be "perfect". Yes, she had most certainly been born with the Congenital Heart Defect, Tetralogy of Fallot, but it was simply a defect that began during fetal development. The cause would likely never be known, as least not while I walked the Earth. I knew Savannah was "perfect"...all of my children are - because they're heavenly father created them in His image.

It wasn't a long phone call. I got the results and confirmed that we wanted to have the level two ultrasound of the babe growing in my belly, along with clarification that I had a 1% chance of having another child with Down syndrome and a 3% chance of a child with a heart defect. Jeremy's condition wasn't even in the was simply too rare to really put a percentage on.

I hung up the phone. I felt strange. In all previous discussions with those in the medical field, we had been given some sort of diagnosis. I would get news, hop on the computer and begin doing research, arming myself for what the future held, so that I might be able to help my children grow and develop, despite their quirky health issues. But not this time. I put the phone on the counter and headed back to the couch where I had been attempting a cat nap. Greg and Savannah were still asleep and Dylan wouldn't be home from school for at least another hour. I laid down, completely at peace. I couldn't even bring myself to call Rob yet. I was numb and I had to soak it in. Savannah was OK. Well, she'd be followed by a cardiologist for the duration of her life, but another surgery is not likely and all annual check-ups were indicating that she would lead a "heart healthy life". She could play sports, mother children - anything her heart desired.

As I laid on the couch, I thought of Savannah's heavenly father. I thought of the day I had found out she had the CHD, TOF. I thought of the day we had her dedicated back to her maker. Yes, God had complete control of her life and if I continued to leave her in His hands and relinquish control, she will lead the life He has paved for her.

Sunday, October 31, 2010

The Magic Mirror

Holidays are a fun time of year that both children and adults enjoy. It's a time of celebration: traditions, giving & receiving, loads of laughter, special trips, amazing food and so much more. We all have our favorites - as well as those we could pass on!

When I became a mom, I was excited to have these special times with my own children. I was excited to pass on traditions Rob and I had as kids and creating our own in the years to come. As Dylan has grown, I must admit my outlook on holidays is different than I envisioned in my early years of motherhood. It's not bad, but certainly not what I pictured.

There is no doubt that while holidays are fun, they also take a lot of work. This is certainly true in the world of raising a child who has a special needs and how you approach holidays! For example, we celebrate Halloween, just in a very mild way. We attempt to do friendly costumes and take the kids out to do a bit of trick-or-treating. Dylan, of course, is obsessed with "scary" costumes. He's very visual and if he had his choice, he'd be a bat, witch, ghost or something else along those lines. They're vibrant and intense and grab his attention. This year he opted to be the "Magic Mirror" from Snow White. I would have preferred to have him go as Prince Charming, but this was a happy medium.

Beyond dressing up, Dylan really couldn't care less about Halloween. He doesn't eat candy, so trick-or-treating means nothing to him. It's these aspects of the various holidays that are challenging for us. We look forward to the holidays, but also do a fair amount of cringing. We want the family as a whole to enjoy holidays and the special festivities that come with them, but finding a balance has proven to be difficult. We want to celebrate as family unit, but often Rob or I must stay in with Dylan, as many things are over stimulating and result in a complete meltdown from Dylan. Our church does a yearly Harvest Carnival and we make it a point to never attend. It's an amazing event and all of our closest and dearest friends attend and we would love to go...but if we did, misery would engulf our family.

As each year passes, we grow as a family in how we celebrate holidays. We make modifications, remembering both the good and the bad from previous years. We're always tweaking things. It's just another part of our life. As I think back on this year's current Halloween, I already know that next year we'll set the porch up in a fun, festive manner and have Dylan pass out candy. He loves to see all the costumes and this will allow him to enjoy the holiday in his own, unique way. Make no mistake, I want him out filling a bag with candy and my heart aches to tell him he's had too many pieces, but that's not the hand we've been least, not yet!

Sunday, October 24, 2010

DiGeorge Syndrome, Part 1

I held her tightly as she screamed. I didn't want to be here any more than she did, but we had no choice. I gripped her head, waist and one arm. A nurse held her other arm while another nurse prepped to draw her blood sample. She was just two, but no two year old enjoys this process!

My mind jumped back to her time in the hospital. She was just seven weeks old when she had open heart surgery. She was in the hospital for ten days, hooked up to all sorts of machines with tubes everywhere, including her main IV directly on top of her head! So much blood had been drawn back then. Why didn't they think to do this stupid test back then??

Yet here we were, kicking and screaming two years later. It seemed like an eternity. In reality, the entire process only took about five minutes. As they finished up, I rocked her and sang to her softly. The genetics counselor said we would receive results in two to four weeks. Now the wait would begin.

As I drove away from the doctor's office that day, I was flooded with numerous thoughts. I was angry she had to endure that experience. I was angry that someone didn't think to do this test when she was just an itty-bitty babe. I thought of the multiple conversations I had with the genetics department in recent weeks. I thought of the babe growing in my belly, which led to this series of events.

Every emotion flooded through me: anger, frustration, fear, hope...even joy. I talked to God. I kept finding myself saying, "Really, God, REALLY?! My sweet Savannah might have DiGeorge Syndrome?" After all our family had already been through, I couldn't believe this was another dish we might be served in our buffet of special needs.

I thought more of the babe currently growing inside of me. At my initial prenatal appointment, I agreed to speak with the genetics department. We made it clear we would do no invasive testing, but would have the Level Two ultrasound. I knew I had a 1% chance of another child with Down syndrome, but we needed to know more about the possibility of another heart defect. We would have this child regardless - it was being created in the image of God - but we did need to know if there were any significant organ problems. We went for nearly a week without being aware of Savannah's CHD and she was at risk during that time for "blue spells". We didn't want that risk again.

The dreaded call from genetics finally came. I spent nearly two hours on the phone with the gal, discussing all of our family history. As a Christian and first hand experience, I believe all children have been created just as the Lord intended...even those who are born with special needs. However, many in the medical field have other opinions and I can only hope and pray that in the various discussions I've had with these individuals, I've planted or watered a seed.

As I spoke with the counselor, she asked if Savannah had been tested for DiGeorge syndrome, as it has a tendency to go hand-in-hand with the CHD, TOF. To my recollection, the test hadn't been done. Savannah was tiny, but was developing "normally" in all other areas. The counselor doubted she had the syndrome, but felt it needed to be done, as it is often not visible to the naked eye. She also informed me that we had a 3% chance of another child with a CHD, but this would increase to about 10% if Savannah did have DiGeorge. As much as I hated the fact that the test needed to be done, I had to agree with the counselors recommendation.

So here we were, two weeks later. The blood had been drawn and the wait began. I can honestly say I didn't know what to expect the results to be. In my nearly ten years of motherhood, I felt it could go either way. I knew I had no control. I told God want I wanted...and also informed Him I would be very upset if I didn't get it. Hey, He's God and I can't hide anything from Him! As I spoke with Him I was open and honest, and it was through that I found comfort. I knew He had a plan. He always does. It didn't mean I had to like it, but could pray that He would show me how to continue to lean on Him when my heart was heavy. This was one of those moments.

Sunday, September 26, 2010


Every now and then a show enters prime time television that you fall in love with. Last Fall was no exception. When Rob and I sat down to watch Parenthood for it's series premier on NBC, we had no idea what to expect. The cast seemed like a good mix. We heard one of the story lines would focus around a child with Aspergers and the affect on his family unit. We were impressed. We would definitely watch again.

As the season progressed, we continued to be blown away each and every week. There are obviously numerous story lines going on, yet the writing surrounding the character who has Aspergers was spot on, including its relationship to the other story lines. It is now in its second season and one of my favorite shows currently on the air.

Explaining what our life is really like to others has proven to be difficult, especially when people are genuinely interested in understanding. With Parenthood, we have something we can refer them to. It is watchable and understandable. To be perfectly honest, the character of Max is fairly consistent with our day-to-day life with Dylan. If anything, it's a watered down version of our real life.

Each and every episode always hits home. Dylan is currently on Fall Break and this is one of the hardest times to be his mom. Keeping Dylan occupied with stimulating activities is exhausting and time consuming. Add excessive heat, his desire to run off and a nauseous, pregnant mommy, and it can be down right miserable. I love being Dylan's mom and embrace it fully, but when his routine is disrupted, life is challenging for our entire family.

If Dylan had his choice, he would watch movies, television shows, You Tube videos and play computer games all day (when he's home). Obviously, we don't allow that. But focusing him on other things can be grueling. He doesn't play with toys like his siblings. He hates heat, so playing outside is the last thing he wants to do. He enjoys going outside, but that can be incredibly difficult because of his desire to run off. With only one set of eyes - mine - it is potentially dangerous, even with Yoko!

Beyond keeping Dylan entertained, it is times like these that I am reminded how engulfed Dylan is in his own world. He cares for our family and interacts with us, but when he's focused on what is currently of interest to him, no one else exists. It's hard and it breaks my heart. I have to remind myself he's perfectly happy and content, even if I want to cry buckets. I also remind myself of what life was like before Yoko and it was significantly worse. Since Yoko, his vocabulary and ability to express his wants, needs and desires have improved greatly. Yet we are always working towards pulling Dylan out of his world and into ours. It improves with each passing day and some days are better than others. But when a rough day - or days - come along, it can feel as if we've gone back in time by nearly a year, especially when he's on an extended break.

Parenthood isn't a perfect show and there are aspects that we don't care for, as we are a Christian family. However, if you would like to understand the life of those with Aspergers, Autism, Down syndrome and a variety of other special needs, I highly recommend watching it. The interaction between Max (the character with special needs), his parents, sister, extended family, friends and acquaintances is incredibly well done. When I watch the show, I feel as though I'm looking in a mirror, at least to a point. If you happen to watch, you're bound to learn something new that I doubt I could ever put into words about our life with Dylan. And yes, our life is FULL of sticker charts!

Sunday, September 19, 2010

Flying Wheelchairs

A small voice broke the silence as I drove. "Mommy, I wanna be a yellow shirt." Before I could say anything, Jeremy continued, "You know, a yellow shirt. A helper for Camp Attitude." Tears rolled down my cheeks as I begin to process what he was telling me. He continued, "I want to help the kids in the wheelchairs. I want to push them around and help with wheelchair races." Somehow, through my tears, I managed to tell him I thought this was his best idea ever.

There is no doubt that Dylan's siblings are exposed to a wide and vast world of special needs. We returned from Camp Attitude several weeks before that. We spent a week around children and adults in wheelchairs, some who are fed through feeding tubes, others who suffer seizures, some who use communication devices, three year old's who use walkers and individuals who have titanium legs (or "robot" legs if you went with Jeremy's description). The kids had attended camp and fully embraced the new individuals they met...wheelchairs and all...but Jeremy caught me completely off guard by what he was telling me.

As a parent, you never know what is going through the mind of your child or what words will escape their lips. Kids are brutally honest. This is the only life that my kids know, yet I think they somehow understand that the world that surrounds them is unique. I want their experiences to leave a positive impression. As a special needs mother, I never know when I might have to take some time to explain a heavy topic with little notice.

Weeks after our camp experience, the kids really had not asked many questions. Greg and Savannah are still very young. We have discussed in depth with Jeremy that all people are created differently but that we were all created by God. Dylan, of course, is oblivious to it all, although I think the "robot" legs made even him take a second glance, which resulted in a "Ooooo, wow!"

There are moments when I worry about my kids and their exposure (or lack of exposure) to various things. For our family, participating in recreational sports is difficult. Little League and nearly all other childhood sports do not fill our Saturdays. It's simply too much for Dylan: the weather, the stimulation...the list goes on and on. We spend more time in controlled, indoor environments: bookstores, libraries and even zoos. It just makes our life a little bit more sane. I would be lying if I didn't tell you that it disappoints me that we don't participate in youth sports. This may not always be the case and I am already beginning to see changes within our family dynamic that may make it possible to do things we haven't been able to do in the past. Only time will tell what the future holds for Dylan and his siblings.

A few days after Jeremy's "yellow shirt" announcement, he did something that amazed me. I never know what to expect when he says, "Mommy, look!" Nine out of ten times he blows my mind. I turned to see Savannah sitting on a small rocking chair. Jeremy had placed the chair on top of a Mickey Mouse Airplane Ride-On toy! It was a "flying wheelchair". Jeremy had come to realize, in his own way, that kids in wheelchairs are often looked at as "uncool". He said, "Mommy, it's a flying wheelchair! I can make flying wheelchairs, like the flying cars, when I grow up, so that the kids in wheelchairs will be COOL!"

Jeremy is my artist, thinker, day-dreamer and little inventor. We all have natural abilities and strengths. There are most-certainly negatives and positives to growing up with a sibling who has special needs. When I look at Jeremy, I see a little boy with a great big heart who sees those like his big brother as God sees them - no different than everyone else in this world.

Sunday, September 12, 2010

The Ugly Law

Had I been an adult in the 1960's or 1970's, it's likely I would have been arrested on more than one occasion. After watching the movie The Music Within, I sunk deeply into our couch. My mind was racing, my heart aching. Could it really be true? Could someone really be arrested for being ugly and/or disabled or for coming to the defense of someone who was? It couldn't be. I figured that it had to be one of those aspects of a "true story movie" that was loosely based. There was only one way to find out. Time to visit the internet.

I typed in "Music Within Ugly Law" and numerous links popped up. I was hesitant to click any of them. I wanted to know the truth, but there was a part of me that just wanted to keep thinking "This can't possibly be true?!?!" Sadly, and without much effort, I found the information I was hoping I wouldn't find. Beginning sometime in the early 1900's, an individual could be fined and/or arrested if they were found to be ugly by their peers. In places like Chicago, Omaha, Nebraska and Columbus, Ohio, the Ugly Law was clearly stated in their municipal code.

Chicago's Law read as follows: "No person who is diseased, maimed, or mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense."

One of the reasons for such a hideous law was that the general public didn't want to deal with those who where disabled or who suffered some other poor, physical condition. If they were "out of sight", the truth of this "ugly" community didn't have to be dealt with.

As difficult as it was to read that this sort of thing existed (and not that long ago) wasn't a huge surprise as I began to ponder it more. I am just in my early thirties, but my exposure to individuals with disabilities and special needs was rare when I was growing up. My underexposure wasn't intentional. Individuals with special needs were not
included in classrooms back then. Organizations that were designed for such groups were in their early, formative years. In June, 1962, Eunice Kennedy Shriver hosted her first summer day camp from the backyard of her own home.

For decades, those with disabilities - especially when it was known at birth - had parents who were urged to place them in institutions. They were told their children would never walk or talk or be of value to society. For those who followed their hearts and kept their children within their family unit, they were often shunned by friends and even family. They feared going out. As I watched this movie, I had a better understanding of why I had not been exposed as a young girl. They were just beginning to emerge into society when I was born. They were finding their footing in a world that was fighting silently to keep them locked up and hidden away.

The existence of the "Ugly Law" disgusts me, yet it was this law that led to the creation of the Americans with Disabilities Law of 1990. Yes, 1990! I had no idea that this law was just twenty years old! We live in a fast-paced, ever-changing world, yet the acceptance of those with disabilities just came in 1990?!

I'm incredibly thankful that I received the privilege of becoming Dylan's mama when I did. But while our society is learning that the life of Dylan is indeed valuable, many still question it. I've witnessed their stares...and I've stared right back! The life my family leads makes some people uncomfortable but I welcome it. It's an opportunity to teach. It's an opportunity to see others be challenged and grow. The process isn't fun, but it's something I would be happy to be arrested for any day, any time.

Sunday, September 5, 2010

Empty Nest

I was talking with someone recently when my current pregnancy came up. They said, "Wow, it's gonna be a long time before you have an empty nest!" It's true, but not for the reason you might think .

I don't think about it often, but it is something Rob and I have talked about on and off since becoming special needs parents. Most children are born, grow and leave "the nest". Sometimes they return at various ages and stages for a slew of reasons, but traditionally, the goal is that your child will lead their own life someday in their own home. I pray daily that this will be the case with our children - that they would lead successful, happy lives - on their own.

But we've got Dylan. It doesn't mean we won't have an empty nest someday, but it certainly spices things up. Individuals with Down syndrome attend various levels of higher education, live on their own, hold steady jobs and marry. This surprises people, but it's very true - and absolutely wonderful! Obviously, Rob and I want Dylan to be as independent as possible. Only time will tell.

The funny thing is that there is a part of me that selfishly wants Dylan home when he should be spreading his wings. It's not that I don't want him to grow and be independent - which he does daily - but I also know my red head well. Right now he likes to bolt and refuses to answer our calls when we attempt to find him, but I believe in time that will improve. There are things about him that will not change - and that's a good thing.

I got what I always wanted: a boy first and a girl last (well, what I thought would be my last!) God gave me exactly what I wanted in more ways than I could have ever imagined. Dylan is full of love and very sweet. He loves music. His current crush is Snow White. When Savannah is six, Dylan will be fourteen. I have a hunch that while Dylan will want to hang with his buddies, yet he's also a homebody and will be happy to play dress up with his sister and be Prince Charming when she's playing make believe.

When I think about the baby growing in my belly, it will be ten when Dylan is twenty. Dylan loves to read and I can already picture the two of them reading together. Dylan loves Disney movies and while I'm sure his tastes will mature, my gut tells me he will always have a place in his heart for Disney and all other kid based movies...making good company for his younger siblings!

Dylan continues to grow up daily. I've been sick and asked Dylan if he could pray for me. He said "Uh, yeah". I had no idea what he would say. He tends to say very particular prays for certain things - going to bed, blessing the food, etc. But I was asking him to do something new - pray a new prayer. While I don't recall his exacts words, it went something like this, "God, go to Disneyland, love mommy, mommy sick, feel better and go to doctor, Amen". To be honest, I was shocked. But I was also thrilled. It was another sign of maturity.

Maybe Dylan will attend college. Maybe he won't. I know he'll hold a job, but I have no idea what or where. He might marry, he might not. He might express the desire (and ability!) to leave the nest. If he does, it's going to take everything in me to not clip his wings.

Sunday, August 29, 2010

Lifes Little Surprises

Six seemed like a nice, round number. It works well with seating arrangements nearly everywhere: airplanes, Disneyland, restaurants, and of course, our own kitchen table. Jump up to seven and you've got an uneven number. It's definition as an "odd" number is true.

Why all the talk about numbers? Well, we're currently a family of six. Some time in the month of April that will change. We will become a family of seven. That's right. The Lord has chosen to bless us with another one of His precious children! We're genuinely surprised but also incredibly grateful.

As I reflect over the past few days, it's been a whirlwind of activity: a positive pregnancy test, deliberating when to announce the "big news" and thoughts coming from every direction. Rob and I both come from large families and we always knew ours would be on the larger side. A while back, we had toyed with the thought of five, but you could say we didn't want to "play with fire". Three of the four have varying degrees of special needs and we sorta have this mind set: If we have another, all bets are off, so let's not even go there. Plus, kids aren't inexpensive! So it was settled. Four it was. Of course, God had other plans!

So here we are. So many thoughts have consumed us. One particular weighs the heaviest: Will this child be healthy? What is healthy? What is perfect? To be completely honest, I'm scared. Our track record isn't great. Yes, all of the kid's issues have been manageable, but I question how much more we could handle. Yet these are human feelings, not those of Christ. I catch myself and hear Him saying, "Trust in Me and believe in me. Have faith."

I often say the Lord doesn't give us more than we can handle with Him by our side. It's scary, yet so very true. This week I found myself re-reading Hebrews 11:1: "Now faith is being sure of what we hope for and certain of what we do not see." I have no idea how the sweet baby growing inside of me will be presented. It may be a child that, in the worlds eyes, does have perfect health. It may have "perfect health" as defined by God. Between now and the time that "perfect child" is placed in my arms, I am certain of one thing: my faith will be tested. I will attend doctor appointments where I will be told this and that and offered more tests than the average pregnant women. It's part of my life with my medical history. I will agree to take some of the tests. I will elect not to take some. It's a scary road to embark on and Satan will be tailgating me all the way. But I have to keep my eyes on my destination and remember to refuel through prayer and time in God's word every single day.
It won't be easy, but I'm aware of who's tailgating me. I have complete confidence that a fender-bender can...and avoided!

Sunday, August 15, 2010

To Bake A Cake

When I asked my son, Jeremy, what kind of cake he wanted for his birthday, he didn't hesitate. "Herbie!" he said as he smiled big. I smiled back...and swallowed hard. For each of the kids birthdays I make their cake. I design it after whatever they are completely and totally in love with at the time. It's a tradition I've created. Jeremy's been obsessed with Herbie (the Love Bug) for over a year and I'm crossing my fingers that the phase ends....soon!

As his birthday approached, I asked him one final time what he wanted. Nothing had changed. I knew this cake was going to take some time and thought. I bought the ingredients and decorations. I did on-line research at my favorite cake website....and yes, it had examples of Herbie cakes, much to my surprise and relief!

When cake-baking day arrived, I was scared. I didn't want to disappoint him. I've often done cupcake-cakes, but knew that wouldn't cut it this time around. It had to be a three-dimensional Volkswagen. That meant multiple cakes, cutting, shaping and strategic icing.

As I began, I thought of Dylan's IEP. In many ways, it's like baking a cake. It takes time and preparation. Lists are made to ensure all ingredients are bought and then a recipe must be followed. I baked and thought of Dylan's IEP and a grin crossed my face. He just started 3rd grade and is off to a great start, but this great start has taken a lot of prep. Then I thought back to his 2nd grade year and I'm sure my brow furrowed a bit. It had been a rough year. We had attempted to get his "cake" just right, but the recipe was off. It was no one's fault. Things just hadn't mixed quite right. There was too much of that, too little of this and the timing was off....creating a half-baked cake at the years end. We had to make a decision. Would we learn from the mistakes that had been made or repeat them? Re-baking isn't fun. It takes time and energy, but sometimes you have to do it in order for something to turn out right.

If I were to describe how it is too raise Dylan, I would say that it is much like baking a cake. You keep trying different recipes until you find one you like. The funny thing is that this year we like chocolate with white frosting but next year it might be white cake with strawberry frosting. We have to be willing to try new "flavors", add extra "filling" now and then and take away a few decorations on occasion in order to see Dylan grow and thrive. This applies to ALL areas (not just his IEP): discipline, entertainment, what he eats - you name it!

There are times when this whole cake baking thing is just down right miserable. Slaving over a stove non-stop isn't a pleasant feeling and washing all of the bake ware is tedious, not to mention the non-stop trips to the store to try something new, in hopes that the correct ingredient will finally be found. Fortunately, I'm just a cook in the kitchen who is overseen by the greatest chef I will ever know. Yes, I have to figure out which ingredients to combine, but if I'm going to His great cookbook daily, He will lead me and guide. He helps me think outside the box. He shows me ingredients I may not have considered before. And in the end, He sees the entire menu. It will taste amazing and the temperature will be perfect!

Sunday, August 8, 2010

Scar or Souvenir?

I filled the tub with warm water and slowly undressed my infant daughter. As I put her into the tub, I knew the time had come. It had been a solid six weeks and the bandage was beginning to peel away. I had been putting this moment off. She was off all medications and slowly putting on weight. This was the last thing that needed to be done. I knew I would be relieved in the end, but in that moment, I was anxious.

She was content - smiling and splashing her little hands in the soapy water. I started to peel back the tape and gauze and it practically fell off. I looked down at her chest and took a deep breath, exhaling slowly. I had no idea what to expect. I stared intently, slowly running my finger along the thin, long line with a purplish tint. They had stitched her sternum but only taped the surface incision, which had surprised me. The purple seemed dark against the fair skin it surrounded. I was told it would fade and appear more white over time.

Tears rolled down my cheeks. I was so incredibly thankful. She was "PINK"! The doctors were confident that this would to be the only incision she would ever have to bare, although there was no guarantee. But it was there - for life. As I bathed her, running the washcloth down her chest, I heard Him: "It's not a scar, it's a souvenir." I froze. I understood instantly. How could I have been so blind? All this time it had been referred to as a "scar", which is thought of as a bad thing. But it wasn't just a scar - it was a souvenir.

She had been born with an imperfect heart. In order to live a full life, she had needed surgery, which would leave her with a "scar" that she would carry forever...and in a fairly obvious place. I wrapped her in her towel. As I dressed her, I leaned down and kissed her "souvenir". Just moments before I was looking at it, unsure of how to describe how I felt. Now all I could see was beauty. It is a reminder of His faithfulness. It is a reminder of His constant hand on our life - her life - now and forever. It is a reminder of His healing touch. It is a SOUVENIR.

It has been well over a year since I first saw her souvenir. It has faded and has indeed become a long, thin white line...just as promised. During the summer, I notice it more....when she's in her swimsuit, wearing tank tops or in a sweet summer dress. I make no attempt to hide it. On occasion, others notice it. It has become a bridge to share the greatness of the Lord with others. In time she will ask about it. I look forward to that. I look forward to sharing how amazing our God is and how He chose her to be a testament to His ever present glory and power.

Sunday, August 1, 2010

House Upon A Rock

The doors swung open. The music started to play and the congregation rose to their feet. I started to walk forward. I glanced to the right and into the eyes of the man who holds the honor of holding me first. My gaze shifted to the left, to another wonderful man who had entered my life a bit later, making the life of my mom and I complete. I linked my arms in theirs and proceeded forward. As I walked, my gaze met his. He was tall and handsome. He was waiting for me, just as I had been waiting for him. In a single moment, two great men who loved me dearly entrusted me to another man.

Remember to remember. Those were the words I kept repeating in my mind throughout the ceremony. Someone close had shared them with me (and it seemed like an odd thing to say), but in that moment I understood: Soak it in! So much had led up to this day: preparation, anticipation and pure excitement. This day would come and go, just like any other day. It wouldn't last forever. In the years to come it's clarity would fade. I stared at his sunburned face and smiled. I would always remember that sunburn. There was no doubt about it.

The candles were finally lit, even with the air conditioner blowing strong. I heard giggles. Maybe four little girls were too many, but I couldn't bear to leave anyone out! We knelled. We took communion. We were giving our marriage to Him. As we kneeled, whispering to one another, the sweetest voice sung in the background. The song itself was not anything extraordinary, just a simple prayer about what we hoped our marriage would be....

Household of Faith by Steve Green

Here we are at the start committing to each other
By His word and from our hearts
We will be a family in a house that will be a home

And with faith we'll build it strong

We'll build a household of faith
That together we can make

And when the strong winds blow it won't fall down

As one in Him we'll grow and the whole world will know

We are a household of faith

Now to be a family we've got to love each other

At any cost unselfishly

And our home must be a place that fully abounds with grace

A reflection of His face

On July 24, 2010, we celebrated eleven years of marriage. We have shared tears of joy and those of sorrow. We have fought and we have kissed. Most importantly, we have built a house upon a rock....the rock of Christ. He is the center of our marriage.

Marriage is not easy and I often think of ours as a series of books. The number of books in the series is dependent on how hard we are willing to work at it. Some volumes will be full of love and excitement while others will be full of trials and tribulations. At the end they read something like, "....too be continued" rather than "....happily ever after." That is not a bad thing, it just means we are living in reality.

The book entitled "Dylan" was an essential volume in our series. Shortly after his birth, the same person who told me "Remember to remember" also told me that Dylan would "make or break" our marriage. I thought that was a horrific thing to tell a mother at the time, but as the years have passed, the truth has revealed itself. Marriage is hard. It takes effort - daily - to ensure its existence. Some days are easier than others. Add a special-needs child into the mix and everything magnifies itself.

We are not perfect, but we have kept faith in our heavenly father, the base of our marriage. When we do begin to trip and fall and wonder what's going on, we realize we were not turning to Him first. We have faced strong winds and even some hurricanes, but our home is weathering the storm. There are some loose nails and the paint needs to be touched up now and then, but we make repairs when we see these things happening. We get on our knees and pray. We open the word ask Him to show us what to do and how to do it. Some things are done quickly with just a few quick swings of a hammer, other things need to be stripped, sanded down and refinished.

Our house enjoys the summer breeze but we also know that more winds will come - and go. During breezy times we store up on supplies so that we can face the storms that await us. We enjoy still, blue skies and when we see the clouds forming, we know our house is built upon a rock. If we're keeping our foundation up to date, our house will stand the test of time.

Sunday, July 18, 2010

To Be The Mission Field

I was just 17 years old when I traveled to Romania to spread the Word of God. My peers and I spent our days and evenings on Romanian streets singing, teaching and cuddling with children who roamed about. We wanted them to know the Lords love and to know they could develop a personal relationship with Him. It was overwhelming and intense. It created a range of emotions. I knew it might be years before I had this type of opportunity again and I tried to soak it in so that God could use me as best He could. I realized that I might never know the impact we would make.

It has been nearly 14 years since then and I am now a mother of four. I do not know if it is something I will ever do again but for now, my children are my mission field. Growing up I thought of the mission field as people who didn't know Jesus. As the years have passed, I have come to realize that the mission field comes in a variety of forms. It is the inner-city homeless. It is the single parent. It is a widowed parent working full time. It is the elderly person across the street with no nearby family. It is the recovering addict sitting beside me in church, striving to remain clean for the Lord, family and friends. The most humbling example - my own family - the special needs family.

I first heard about Camp Attitude a few years ago. It is a family camp designed for the special needs family so they might enjoy the camping experience in a safe environment - something they rarely get to do. In the material I sifted through, "volunteer buddies" would be available to help out the families. It was also free to the entire special needs family: parents, siblings, etc. It seemed too good to be true.

We attended for the first time last week. Here, our family was the mission field. As we entered, we saw young people in yellow shirts milling about. We piled out of our car and a young man - just 18 - greeted us and pointed us to check-in. Our kids were swarmed by the teens in yellow shirts. They were off and running to the playground while we were shown too our yurt. The same young man who had first greeted us asked which yurt was ours and asked for our keys. Within minutes, that same young man and about ten others were delivering our luggage and handed us back our keys . The car had been unloaded and locked. The kids were playing happily with the "yellow shirts". We had arrived barely fifteen minutes ago. We were slowly beginning to pick up our jaws from the floor of the yurt. It was hard to do. The young man who had greeted us had two robotic, aluminum legs. We were surrounded by people who "got it". We were in heaven.

As the evening progressed, we came to understand how Camp Attitude worked. Every individual in a "red shirt" was "staff" or "servant". They are not paid - they pay to come! Those in "yellow shirts" (aka "buddies") were a youth group from the state of Washington who had also paid to be here! They ALL paid so that the families with special needs might come for FREE! We are their mission field this week. The "buddies" were to serve all kids in any way possible: run along side them, push them on swings, give wagon rides, take those in wheelchairs on strolls, take them to various programs being offered all week, provide assistance on the boats and jet skis and time at the river...even take our meals with us!

Camp week flew and saying goodbye was heart-wrenching. Our lives have been changed and I'm already counting the months, weeks and days until next years camp. We will be back for many years to come. As I got to know the two buddies assigned to our family, I am constantly reminded of how unique my Lord is. The youth group serving as buddies this week is a Slavic based church. They are all immigrants from Russia and surrounding countries and came to America at various ages - as infants, toddlers, adolescents and a few as teens. One of our buddies was from Romania. She is 17. My family was her mission field this week. Just as I raised funds so many years ago to visit her native country to minister to children and their families, she did the same.

I was humbled to think that my family was the mission field, yet so very grateful. I grew up camping and boating. But doing such things with my own family seemed impossible as Dylan began to grow. It could be dangerous. But at Camp Attitude it is not. We rode in a hot air balloon with a wheelchair ramp. (There are only four in the US.) Dylan and I rode on a jet ski....our driver had an artificial right foot and lower leg. We have stayed in safe accommodations and I slept soundly, knowing that Dylan could not escape and wander down to the river or deep into the woods.

Do I think it was coincidence that our buddies were native to an area I once had the privilege of doing the Lords work? No, I don't. I have often thought back to the time I spent in Romania, wondering how the Lord used me as His vessel. I realize now that the Lord worked through me to show His great love and compassion to the children who sat in my lap, just as these young people did this week for my family.

Sunday, July 11, 2010

Footprints in the Sand

I looked at the menu above me and blinked my eyes. Then I blinked them again, trying to to figure out why I on earth it seemed like a blur. The lady behind the counter seemed annoyed. "What can I get you?" she asked for the second time. I looked down at the food. I was starving. I was nursing Savannah nearly every 1-2 hours and felt as though I was inhaling food to keep both of us nourished. I pointed to a few items and said "I'll take that, that and that". Rob ordered next.

Pay. We needed to pay. I couldn't seem to maneuver through my purse to find my wallet. Rob gently pushed me aside, paid and took the trays. We arrived at a table, surrounded by family. I told them that I couldn't read the menu. My Dad gently reminded me, "You're mind is on overload. It can't process even the simplest things right now". He was right. I prayed the hours before me would pass quickly, but I highly doubted they would. We ate. I drifted in and out of the conversation. I was recalling the seven weeks up until this day...

It had been chaotic. Oxygen readings and weight checks at least twice a week. At first those readings were good and she was putting on weight, but things started to spiral downward and she began having blue spells. I didn't want her out of my sight. Who knew when I might have to shove her tiny legs into her chest to open her airway? Then Dylan got sick and that was the final straw. She would be admitted and wouldn't come home until surgery was done and over with.

While surgery day was intense, there was also a sense of relief. Assuming all went well, this could very well be the only surgery she would ever need. But we had to get through today. In those hours that I waited, I went through the motions of walking, talking and anything else that I could find to keep myself occupied.

When I look back at this day, I often think of the poem "Footprints In The Sand". Handing Savannah over for surgery had been intense. Would I hold her again? Would I have the opportunity to kiss her sweet face? Would I rock and sing to her? They were operating on her heart - what if something went wrong? When I think of those moments of dealing with blue spells, surgery and post surgery, Rob and I were literally being carried by the Lord. I truly believe that if I didn't have the Lord I would have fallen apart. I don't believe the human mind is capable of processing these type of circumstances without Him.

When I couldn't focus, I would close my eyes. He brought me clarity. He brought me peace. He brought me strength. Just as He was holding me, He was holding Savannah. His hands were upon the surgeons hands, guiding every move. His wisdom was with the surgical team, keeping them alert and focused during a lengthy procedure. When the time came for her to be taken off of the heart-lung machine and her heart was asked to begin beating again, He allowed it to come to life - for a second time - whole and complete - just as He had months before in my womb. He is in charge and always will be. He loves me. He loves Savannah. In my darkest times when I am lost and can not see in the darkness, He is carrying me through and will set me on my feet when I am ready.

Sunday, July 4, 2010


When you have a baby and the time comes for you introduce them to your family and friends, you're confronted with a few basis questions: Is it a boy or girl? What's their name? How much did they weigh? Are they healthy? Those are easy questions to answer most of the time....for most people. We aren't like most people. The birth of our daughter came with some very unpleasant news: she would need heart surgery. I would be out in public and someone would say, "Oh, how sweet - so perfect & healthy!" I would just nod my head, pretending that my child's health was perfect....not wanting to explain this and that.

The morning after we got the bad news, we stared at Savannah, tucked between us in bed and sleeping soundly. We were lost in our own thoughts. I broke the silence and asked Rob what was going through his head. "Honestly, I'm just annoyed," he admitted. I understood exactly what he meant. I asked him how he wanted to handle it. He didn't know and neither did I. The truth was that we wanted to lie there forever and pretend that nothing was going on. We both knew that reality would set in the moment we pulled ourselves out of bed and we would have to move forward.

Rob was annoyed that we had to tell everyone about Savannah's condition. There would be questions and we would need to provide answers. Her health needed to remain optimal for heart surgery. That meant we had to keep everyone in the family healthy....not an easy task with six people under one roof! Hibernation, here we come! We would also need help - again - with the boys while I shuttled Savannah to and from doctor appointments. I was worried about exposure to germs. I was worried about meals when I wouldn't be home to cook. I was worried about getting people to stay with the boys when surgery time came. It was daunting. It was miserable. Help was the last thing we wanted to ask for. We always seemed to need help and we just wanted to be able to help others for once!

People worry about you when you go through something of this magnitude. While we were certainly concerned about Savannah's health, it didn't consume us. Our relationship with the Lord is strong. That may seem odd to some people, but she was in the Lord's hands and that brought us a peace I will never be able to explain. We had relinquished control to the Lord years before through our experiences with Dylan and Jeremy. We knew the drill. We were used to hospitals, doctors and medical terminology. We were just frustrated that we had to request help and tell everyone - AGAIN!

Should we call everyone? Send them all email? What was the best route? Facebook is the "new thing" - maybe it could just be our status update? We joked. We had too....laughter is what got us through those intense moments. I called my sister the same evening we had found out about Savannah's condition. She gets it. She's the one can I go to when I need a level head in the midst of chaos. I can joke with her about my children's crazy health issues without either of us getting too emotional. I was doing that enough on my own. She asked me, "So, how are you going to tell you really want to call everyone?" We just didn't have the energy to repeat the details to each set of parents, siblings, and close friends. An email seemed like the best option. We could spell it all out and people could process it in their own way. We would call our folks, but be able to refer them to the email, which would have more details.

There was a knock at our bedroom door. It was Jeremy. He climbed into bed with us, gazing at his new little sister. I don't recall all that was said, but I remember Jeremy getting restless after cuddling for a bit and I found myself looking at Rob. He returned my gaze and said, "Well, let's do this!" as he climbed out of bed. We shuttered at the thought of the long day ahead and the roller coaster ride we were about to embark on, but we were in it together. Even though we hated asking for help, the Lord had blessed us with amazing family and friends. This was the deck of cards the Lord had chosen to deal us, so we pushed our pride aside and dove in.

Sunday, June 27, 2010

Blessed Be His Name

I was lost in thought as I drove. I wanted to be home - NOW. But it was after 4pm on a Wednesday and was caught in early commute traffic....home was an hour away at this point. I heard dinging....what in the world was dinging? It was the car - it needed gas. It had needed gas before I left to take Savannah to her cardiologist appointment, but I had forgotten to stop. I wiped the tears from my eyes and pulled into the next gas station. I jumped out of the car and immediately checked on Savannah. I wanted to make sure she wasn't blue....she needed to stay PINK. Gas. That's right, I needed gas. I got my wallet and slid my card. Now I heard beeping. "Unable to read card" blinked at me in the midst of the beeping. I slid it again....the whole process repeating itself. I looked at the card that was in my trembling hand, puzzled. Well, my Costco membership card wasn't going to get me gas. I got the correct card from my wallet and slid it. Gas! $10 would get me home. I'd fill up later. I just wanted to be HOME. I peeked at Savannah again. She was sleeping. She was PINK. There was no doubt this was going to be the longest drive I just might ever drive......

As I pulled back into the heavy traffic my mind was overwhelmed. A few hours ago I had left Rob at home with our boys so I could take Savannah to her cardiologist appointment for that silly heart murmur that wouldn't go away. We'd thought there was no reason for Rob to go....we would have had to find a sitter for the boys and no one knew about the seemed silly to worry everyone about something we thought would probably result in nothing more than meds prior to dentist appointments, like Dylan's heart murmur. We were SO wrong.

Rob was not present when I learned Dylan had Down syndrome. He was on a business trip when we received the official diagnosis that Jeremy would never father children. History had repeated itself today. The "silly" murmur was much more complex than we thought. After an EKG, X-Ray and ECHO, it was confirmed that Savannah had a Congenital Heart Defect (CHD) - Tetralogy of Fallot, to be exact. Her oxygen level was holding at 92%. They said she was in the "Pink" stage but this could change. She needed to come in 2-3 times a week and have her oxygen and weight checked. If it fell below 92%, an ECHO would have to be done. She needed to put on weight. She HAD to stay WELL. If she started to turn blue, we needed to push her body into the fetal position. This would open her airway and allow the oxygenated blood to properly pump through her body. But the words that stung the baby girl needed open heart surgery.

I drove on. We would be BACK next week to go over everything in more detail with the doctors. In the meantime - FEED her and WATCH her. I was in agony. She was in the infant car seat and I couldn't see her. What if she turned blue while I drove? I yelled at God. I was alone. He'd better be watching her as I drove! In this moment, I got my hand slapped by Him. "HELLO?!?! I created her, of course I'm watching her - she's MINE." The tears flowed. He was not only watching over her, but the entire car as I drove home.

I began to talk with God. Every....single....time....I had received news about our children, Rob had not been present. Rob is my other half. I'm incomplete without him. Yet, in these moments when I wanted nothing but his arms wrapped around me, he wasn't there. But God WAS. He was demanding me to talk to Him - to depend on HIM and HIM alone. He wanted my undivided attention from the beginning of this journey - He had requested it in all the bumpy roads I had traveled with my children. This was the beginning of a long journey. In that moment, the song "Blessed Be Your Name" began to play on the CD that was playing. It's a song the Lord has used repeatedly in my life since Dylan's birth. I drove and cried even harder. What was my heart going to say? Would I curse His name or praise it? He gave me a beautiful daughter, but took away her perfect health. In this darkness - this dessert, what would I CHOOSE? It was going to be painful to watch my daughter go through the weeks, months and years to come and only I could decide how my heart would move forward.

For nearly an hour God held me captive, depending solely on Him in my initial reaction. As I turned onto our street and into the garage, I told God I was devastated with the news I had just received. I had no desire to travel the road ahead of us. I just wanted to sit back and enjoy my sweet girl. I couldn't understand why He would put us through something so big again, but I told Him I would praise Him and find blessings in the midst of this trial. It wasn't going to be easy for me....I was upset with Him. VERY upset, to be completely honest! Yet His peace was beginning to surround me. It was ok to be angry, but I had to keep my eyes on Him - that's all He wanted from me, at least for now.

As I got out of the car, I looked up to find Rob standing in the garage. His arms were open wide and I fell into them. God wanted me to depend on Him first. But He knew I needed Rob. As I stood there crying with his arms around me, I was already praising the Lord's name in the midst of heart break. I had the Lord. I had Rob. We all had each other. Everything would be ok, whatever "ok" was......

Sunday, June 20, 2010

The Good, The Bad & The Ugly

In honor of Father's Day, this week's blog will be written by the man that I am honored to call my husband and the man that my children have the privilege of calling their father. His words begin below......

I love people-watching and California has plenty of great places to do it. Some of my favorites to do it are Santa Cruz, San Francisco, Hollywood, Disneyland and Venice Beach. Another good place is my hometown in the east bay...except, it's usually my family that puts on the show.

As a father of a child with special needs, it's a part of life. People stare. Some of them are better at hiding it than others. Some don't even try. In a way, it's almost like being a celebrity...except no one asks for an autograph. Actually, we have had our picture taken at Disneyland. More on that later.

It's okay. We're used to it. Stare. It's hard not to. We are a family of six plus a service dog. It's hard not to make an entrance. We've tried. Not making sense? Let me paint a picture.

It's Sunday morning at your typical mega-church. The service wraps up and you pick up your kids from Sunday school. You are chatting with some friends in the courtyard as people head into the next service. Then you notice a family of six...and a dog...emerging from the handicapped-accessible area right next to the courtyard. It's hard not to stare at six people and a dog walking into church. It's hard not to do a double-take when you are standing in line to pick up your kid from Sunday school and you see a man walk around the corner with his son with special needs and service dog.

We are the type of family that gives people-watchers something to do.

As a father of a child with special needs, I rarely get asked what it's like. Not surprising, I suppose. People don't want to say the wrong thing or run the risk of offending. I understand because I am the same way. If someone did ask me, though, here is what I would say: "Mostly good times, but there are bad times and even ugly times."

Let me explain a little bit about each, starting with the bad. Down syndrome, by its very nature, is delayed-development. Take Dylan's teeth, for example. His first four teeth (at age two) were molars. He never learned to chew properly until some very recent break-through therapy. Most of what he still eats is...well...soft, blended, or baby food. Not knowing how to chew properly is a bad thing. After all, how do you teach a kid how to chew? Isn't that something that all infants just learn on their own? Apparently not.

Dylan does not have much of a sense of danger. That's a bad thing. He can wander off with little or no regard to his own safety, which is a huge part of why we got him a service dog. Yoko is a trained SAR (search and rescue) dog.

Dylan can be very strong-willed, especially when it comes to mobility. If he doesn't want to walk somewhere, he will sit down in matter where we are or what we are doing. He simply will not budge. Imagine you are at a mall and your son doesn't want to come out of a store. You take him by the hand and he plants himself down in the middle of a walkway. Imagine you park in front of your child's school and you get out of the car to walk them to class...except your 65 pound son will not get out of car. That's a bad thing. That's another reason we have Yoko. She gets him moving because he wants to walk with her. It's that simple.

Everything takes longer than it should. Most things are more complicated than they should be. Meticulous planning is an essential part of our everyday life. If we don't plan, we pay the price...and put on a great show for people.

How about the ugly? I won't go too much into this one, but here are some things to ponder. Potty-training is something we didn't even like to talk about until Dylan's enormous progress this year. Those 2:00am diaper changes just might be a thing of the ugly past. He'll hide Yoko's chew toys and then give her REAL toys for her to chew. The result is a...very...ugly...toy. He will ask you for something and if you say no he will keep asking over and over and over and over and over and over and over and over and over...well, you get the picture. It's enough to give you an ugly attitude if you don't learn how to cope, which we have. He likes to fall asleep on the couch so that he can be carried to bed. He's 65 pounds, people. It's an ugly habit.

Now for the good, and there's plenty of it. The things that mean most to me are the little things he does. The "Dylan" things. He watches Disneyland rides on YouTube and lives in, raising his hands and screaming to the "Matterhorn" video. He falls asleep in some of the most unusual places & poses: middle of the stairs, middle of the floor, top of the table, and a hundred other odd places that make you just laugh your head off and reach for the camera. He cuddles. How may parents still get to cuddle with their nine-year-old? He loves to color. He is just so proud when he finishes a picture and shows you. He loves to read and write. He loves animals. In fact, his love for animals is infectious. His love for a lot of things is infectious.

So here’s the deal with people taking our picture. Have you ever been to Disneyland? Have you ever seen a dog there? Have you ever seen a dog on the Pirates of the Caribbean or Alice in Wonderland? No? If you did, would you take a picture? Some people would…and did. That’s okay. I’m glad we made their day. It kind of made ours.

My wife and I have often thought: It sure would be interesting to get inside Dylan's head for just five minutes and see what he is thinking! Today, I had a revelation. I actually got a glimpse of what is going on inside Dylan's head. You can tell what someone is thinking partly based on what they write. Dylan drew some pictures and then took three or four pages and wrote down a bunch of words. Here they are:

Snow White Ride
Water park
I Love Mommy Jeremy Daddy Dylan Dylan
(Yes, he wrote his name twice. I guess he really loves himself. I know he loves Greg, Savannah and Yoko, too!)

That's one of the things that make it all worth it. I'll take the bad and the ugly because the good is really, really good. No, Dylan is not your typical nine year old. His mind works very differently, but everyone that knows him will probably agree:

1. Dylan is very loving and accepting.
2. Dylan doesn't hold grudges.
3. Dylan isn't afraid to show his true feelings. He always lets you know exactly what he is feeling, even if it isn't verbal.
4. Dylan can always bring a smile to your face.

Sometimes I ponder this thought. Maybe Dylan, at age nine, is more like Jesus than I will ever be.

Sunday, June 13, 2010

A Daughter of Christ

Rob and I decided not to find out the sex of our fourth (and final) child. Here was our logic. We had three boys and enough baby gear and clothes to provide for a small village…and then some! Besides, we had found out the sex with the other three. We wanted to be surprised. We figured that if we DID have a girl - which seemed highly unlikely, considering our record - who didn't like to buy girl clothes??

The big day came and the moment of truth had arrived: Boy #4 or Girl #1? "Well, what is it?" I demanded. Rob had a look of sheer pleasure. "Just let me double-check", he said - keeping me in suspense! Not wanting to keep a woman who had just labored waiting, he announced, "It's a Savannah!" I was elated. I was shocked. I was suddenly and completely in love with the thought of PINK!

In no time, it was time for my sweet baby girl to meet her big brothers. I was overwhelmed with joy as they bounded into my hospital room. Our family was now complete. They munched on Happy Meals…and created mischief. The cringing nurses saw chaos. All I saw was laughter and smiles. It was heaven.

Our evening together passed quickly and I soon found myself giving them goodnight kisses and telling them I would be home the following day. Just like that, I was alone with my daughter. You could have heard a pin drop in the room. Rob would settle the boys at home with Grandma and be back soon enough, but in that quiet time I just held my daughter.

The pediatrician came by to congratulate me and examine Savannah. After a few minutes she told me that she had detected a small heart murmur. Apparently, it had been picked up right at birth and it was the primary reason for her visit. She went on to tell me that she expected it to clear-up quickly and would be back in the morning to listen again. If it was still there they would do some basic testing that would take about one to three hours. Just as quickly as she had arrived, she was gone.

I tried to remain calm as I sat there. I told myself to take deep breaths. I wanted Rob BACK at the hospital. He seemed to be taking an eternity! My mind was overwhelmed and I was trying to tell myself it was nothing. After all, Dylan had been born with a mild heart issue and was completely cleared by the cardiologist at age five…and he had Down syndrome! Besides the murmur, Savannah was a picture of health! The doctor gave the impression that it was nothing. She had shared that a large number of people in this world have heart murmurs and it impacts them in no serious way - she highly doubted it was anything!

As I waited for Rob, I did some talking with God. I had finally gotten a girl…and she was perfect. I told God I knew He was just testing me and seeing if I would trust Him - again. I informed the Lord I wasn't sure why He felt the urge to test Rob and me so often, but I admitted to Him that I knew that Savannah was His. I knew He was in complete control. The conversation between us was a bit unpleasant. Being tested was not at the top of my list…especially when it came to the children He had entrusted me with. Why couldn't He just leave them alone? Yeah, I was talking back a bit, but in the end I attempted to put the arguing aside and let Him do what He does, which always ends up to be the best. Rob finally returned and I filled him in on the news. He was unsure of it all, but remained incredibly calm and positive.

The morning exam revealed that the murmur was still present. Time for testing. Now when I look back at this moment, I realize just how much Rob and I had grown in our walk with the Lord since Dylan's birth. We walked Savannah over to the NICU. Remember the NICU? It’s the Neo-Natal Intensive Care Unit…where Dylan was for five days. We handed Savannah to the nurses and watched as she was hooked up to all sorts of wires and monitors. The NICU didn't faze us much. It just seemed to be a part of our birth experience. Once Savannah was settled, I headed back to my room. I was tired. I wanted a shower. The best thing I could do for all of us was to keep myself busy. I suppose I could have sat beside Savannah for nearly three hours and fretted over her well-being….but what would be the point of that? I couldn't do anything for her. She was my earthly daughter, but ultimately she was a daughter of Christ and He surrounds her at all times. That’s something I will never be able to do, no matter how much I want to. All I could do was pray, and that could be done anywhere, so I went back to my room for a nap and shower!

Savannah’s tests came to an end and she passed them all. We would need to take her to the pediatrician in a few days to listen again to her heartbeat. I sighed. I was relieved with the initial tests results, but we had to come back in less than 48 hours, which we did. Once again, we were told that the heart murmur was still there. To be cautious, an appointment with the pediatric cardiologist was scheduled for just two days later.

We drove home knowing we had one more appointment upon us. My heart was heavy. I just wanted to enjoy my itty bitty baby….the last I would ever have. As I fell asleep that evening, I talked with God again. This was SO exhausting: the back and forth to the hospital, the uncertainty of what was going on, etc. All I could do was remind myself that Savannah was being held by her heavenly Father. Whatever her next appointment revealed, at least we would have answers…and a glimpse of what God was doing.

Sunday, June 6, 2010

The Uneventful Birth

Rob and I entered the delivery room with mixed feelings. We could hardly wait to meet our third boy…but we were anxious. Getting pregnant was never an issue for us. Having full-term, text book pregnancies? No problem. Having children with life-long issues? That’s us! So, in those final moments before I welcomed my third son, I took a deep breath and gave him to God, right then and there.

Within minutes of Gregory's birth he was given the "all clear" from Down syndrome. He was little - only 6lbs. 12.oz. - but a picture of perfect health. We weren't quite sure how to respond. He didn't have to go to the Neo Natal Intensive Care Unit. No specialists were being summoned. No equipment was rolling through the delivery room to check on this or that . It was weird - it appeared we had a "healthy" kid.

It's been three years since that day and Gregory is still a peanut. I'm constantly trying to fatten him up in the healthiest way possible - but I try to remind myself that's just the way he is. Rob and I were ready to tackle whatever God gave us in Gregory, but God is good and hears our every word. Every now and then He answers our prayers the way we desire Him too.

Don't get me wrong. I know the Lord answers prayer in the way that He best sees fit, but there is no question that it is often very different than the way we imagine and can take time for us to understand why. Gregory is still a picture of health. He's incredibly clever and learns new things so quickly - which I know is bound to happen with two older brothers to sit back and watch! He's happy and lovable and a picture of peace.

A few weeks back, I heard noise in one of our bathrooms. I keep the doors to the bathrooms shut because our infant daughter is fascinated with toilet bowl water. I went in too see what was going on and all I could do was stare in disbelief. Gregory had placed the toddler Spiderman potty seat on the toilet and undressed himself. He saw me and said "I go pee-pee". I had picked up the small potty attachment not long before that, knowing I was going to start plugging away at the whole potty bit with him. He beat me to it. He was taking himself potty!

As the weeks have passed, he has continued his habit. He's still wearing pull-ups, but he's taking himself - even going poop with no issue! He's not a 100% there, but he's making progress and he's done it completely on his own!

I've pondered over this whole event a great deal. Dylan is well over nine and while he's making great progress with his relationship with the toilet, it's going to be a bit before he's totally in love. Jeremy was well over four before he found his way to the toilet. And it was a long, rough road. He's the boy who shouldn't be bothered with anything if something important is going on, including potty breaks.

Why Greg? Why was this so natural for him? Is it because he has older brothers to watch? Is it because we've REALLY been plugging away with Dylan's training and making progress? I'm still in amazement of Greg and through it all, God is telling me to sit back and enjoy. God is allowing me to focus on Dylan's training and know that Greg's nearly there, so I don't need to fret about BOTH of them. God listens. God hears. God answers. He knew our load needed to be lightened a bit.

We started the whole kid potty-training thing when Dylan was three. We’re not done yet. We still have one more after Greg. That's six years and counting! That's a lot of diapers, pull-ups, sticker charts, and prizes - not to mention accidents! The Lord knew needed we needed a bit of peace in our crazy, chaotic home and He gave that to us through Gregory.

Sunday, May 30, 2010

They Don't Belong to Me

In the early days, weeks and months following Jeremy's birth I recall spending numerous, midnight feedings in deep thought. I was two for two. Dylan has Down syndrome and Jeremy could not father biological children. I recall sitting and holding him and talking with God, well, it was probably more like arguing.

So many of my dreams were being fulfilled, yet so many were being shattered - dreams that I did not even realize I had. Yet God was opening my eyes and showing me that they were my dreams, not His. Before I knew it, Jeremy's baby dedication was upon us. As we stood before our church congregation, I realized Jeremy does not belong to me. Neither does Dylan. They are vessels of the Lord. He has entrusted each of them to me to love unconditionally and raise them in the ways of the Lord. But at the end of the day, they are His and He has great plans for each of them. In the medical world, Dylan and Jeremy are flawed, yet the Lord has designed both boys for a greater purpose and each of their "flaws" are a significant part of this plan.

I knew my children didn't belong to me - it was why Rob and I chose to have them dedicated. But standing in the church that day, surrounded by family and friends, I realized just how significant this action was. I make mistakes daily. I want to be the perfect mother, but I can't - it is impossible. In many ways, we were admitting this by way of the dedication itself. We were making a public proclamation that we want what God wants for them. We were asking for accountability that we would remain faithful to God in all of the choices we would make for our children.

As time has passed, I think of my own parents. I had been dedicated as a young baby. When I became a parent for the first time, I know it was difficult for them to see a child with Down syndrome placed in my arms. Their hearts ached again when Jeremy was born, knowing in the world's eyes he too was imperfect. They had raised me in the ways of the Lord. I had come to know the Lord on my own in my own time and was living my life for Him. Why would He choose to bring the daughter they loved so much such great heartache and so many challenges? The irony in it all - that is exactly why the Lord gave me the opportunity to be Dylan and Jeremy's mother.

They had given me back to Him and said "Lord, she's yours, do as you will" and He did. They sought Him when they raised me - in all things - both the good and the bad. My parents remained constant to Christ and through that I have learned to lean on Him alone in times of need. So while Dylan and Jeremy's diagnosis are heart breaking, I see that the Lord is in control, not me. With His guidance I can handle all that lies ahead. I cry for my children. My heart aches for what they can not do. But I also rejoice. I rejoice because each of my children belong to God and His purpose for them is great. None of my children are "mine" and knowing that, while it is terrifying a great deal of the time, comes with a peace that is indescribable.

Sunday, May 23, 2010

Statsitics T21

There were moments, in the early days following Dylan's birth, were I seriously wondered if he would have any siblings. I always envisioned having a large family. Four children was the ideal in my mind.

One night, shortly after bringing Dylan home, I sat on the couch and wept as I nursed him. I looked up and saw Rob leaning over me and he asked what was wrong. I was questioning whether or not Dylan would be our only child. I was questioning everything I had ever wanted and dreamed of in a family.

We had many doctor appointments in those early days. One was with the Genetics Department at Stanford University. If I could use one word to describe the experience it would be "comical". We checked in and waited just a few moments until about 6 people walked in! We could not imagine why there were so many young people interested in our son.

It turns out that the genetic counselor-doctor had five Stanford medical interns with him. None of them had ever seen an infant with Down syndrome. They ALL asked if they could touch Dylan's head. Rob and I looked at each other, puzzled, but agreed. Apparently, all babies with Down syndrome have perfectly round soft spots while "normal" babies always have oval soft spots. They had only read about it in their textbooks but had never seen it first hand. They each took turns touching his soft spot. This made our day. I wanted to burst out laughing!

We did not really understand what the appointment would involve when it had been arranged for us. We already knew that Dylan had Down syndrome. We knew it was the most common type: "Trisomy 21”, not Mosaic. There are differences. We knew it was non-genetic Down syndrome, meaning that it was completely random. In fact, this is actually the case for approximately 93% of all Ds births. He had also already been seen by the ENT, Ophthalmologist and Pediatric Cardiologist

During the appointment, we were asked why had we opted out of prenatal testing and a general family history was taken. They went over things that Dylan might experience some day. For example, individuals with Ds are more prone to Leukemia as a child and Alzheimer's as adults. Ear infections, hearing loss and poor eyesight are common. Low muscle tone would impact development. Some children with Ds experienced teething later and their teeth were likely to come in very randomly - we DID experience this, by the way!

Some of this we had heard prior and some of it was new, but none of it intimidated us. I think our attitude caught them a bit off guard. Overall, we were ok with Dylan's Ds. We knew why - it was the whole God factor, but they had no idea. We tried to interject our faith when we could and I can only hope we planted a few seeds.

The biggest question we had that day was, how would this impact expanding our family? What was the likelihood of having another child with Down syndrome? At age 21, I had a 1:1140 chance of having a child with Ds. Once you have a child with Ds, your chances jump to 1:100! Actually, the reported incidents of multiple Ds births to the same mother are very rare. I've met a few, but it is rare.

At the end of the day, I knew I wanted more children and so did Rob. God saw the desires of our heart and that was to have a family - a large one. We knew the risk but we also knew God was in charge and that He would see that our next child was just as perfect as Dylan was.

When Dylan was well over three, he became a big brother. God gave us Jeremy. He even made Jeremy specifically for Dylan, in more ways that I ever thought imaginable. To the naked eye his health is perfect and he is developing like any other little boy who is nearly six years old. Yet, underneath the surface is a little boy who can not father children. There was 1:7500 chance Jeremy would be born with the condition he has. Overall, he's extremely healthy. I pray daily for the spouse he will marry (if he chooses), but he will not become a father…at least, not in the traditional sense.

Once again, we had a lot too soak in. Dylan has been born with a visible disability and Jeremy with one that is unseen. Both would greatly impact their lives. They have something in common that I never imagined they would: the inability to father biological children. Dylan's is a conscious decision while Jeremy's was determined by his Maker, our Heavenly Father. Once again, a puzzle piece was being placed in the bigger picture that the Lord is putting together for our family.