Familiar Environment, Part 2

We sat there, observing the technician who was performing Lincoln's ECHO, trying to figure out if the prognosis was good or bad. Never a good idea...but you can't help it. The tech finished up and the images were sent to the Pediatric Cardiologist. We knew him. It was the same doctor who had diagnosed Savannah. His newest assignment: Review Lincoln's images immediately and get the results to the head of the NICU, who would then deliver the news to us...good or bad.

Lincoln continued to be prepped for transfer as we waited for the ECHO results. Suddenly, the doors to the NICU swung open and the transport team entered. This particular experience was new for us. There were two ambulance drivers, a lead NICU doctor and a lead NICU pediatric nurse, as well as an additional nurse. Then there was the "NICU On Wheels". It was essentially an infant incubator on wheels, decked out with every single piece of medial equipment one could imagine. It was quite the sight. Lincoln was placed inside of it with all kinds of monitoring equipment attached to his tiny body. We had never seen anything like it. After much discussion, we decided not to follow the ambulance to the hospital Lincoln was being transferred to. We wanted to wait for the ECHO report...and we were anxious for the results.

Lincoln was nearly ready for his transfer when the lead NICU doctor came out to speak with the technician. The Cardiologist wanted one more set of pictures of Lincoln's heart...from a very specific angle. Rob and I looked at each other. This couldn't be good. My heart was pounding and my stomach was in knots. One of nurses sensed our tension and fetched us a couple of food trays. He escorted us to the nurses break room, which was within the NICU, keeping us close by, but a few steps away from all of the commotion. We closed the door and ate.

We sat there, inhaling our food and talking. Could we deal with another heart defect? Could we hand off another child for heart surgery? How could the great God we loved with every part of our being possibly ask us to do this - again? And yet, as we set there before the Lord, we were at peace. We knew people were praying for us - it was the only explanation to the peace that we felt. The situation was still scary and unpleasant, yet manageable.

We talked about the people we were meeting. We talked about how we hoped our faith in the Lord was being shown to others through this situation - specifically the hospital staff. We prayed together. We were quiet. We told the Lord if this is what it was going to take to bring even just one more to Him, then ok. We would face another CHD head on. We would embrace whatever was going on within Lincoln's body - a little body that the Lord Himself had created. If he needed to use Lincoln as a disciple for his work, so be it. We didn't like it, but we were willing. There was no doubt it wouldn't be easy, but we had never know the luxury of easy....so why start now? We couldn't help but chuckle...it really is the best medicine.

We finished our meal and waited for the ECHO to wrap up once and for all. The images were sent over to the doc - they were exactly what he needed to make a final diagnosis. We prayed over Lincoln, so tiny in that "NICU on Wheels", and off he went. As we watched him leave, we were overcome with every possible emotion. The doors closed and we took a deep breathe - ECHO results were expected within minutes.

The NICU doctor came out. We were certain that something was wrong - certain that a CHD was present. The doctor spoke. Lincoln's heart was PERFECT. There was NOTHING wrong with it. Nothing. Yes, Lincoln had a lung infection and was dependent on oxygen, but - at least for that moment - they believed that was ALL that was wrong. We were speechless. That was it - round one of waiting was DONE.

Even though we knew our boy wasn't out of the woods yet, we had overcome a huge hurdle. Now it was time to tackle the next one. As we left one NICU for another, we hoped our testimony would linger in that room full of nurses and doctors. We prayed that we'd left a mark on each of their hearts and sparked their curiosity as to what gave us the strength to endure such an unpleasant time in our life.

Familiar Environment, Part 1

We arrived at the NICU. It was certainly busy. There was no doubt Lincoln was a top priority. Before he was transported, they were going to do an ECHO of his heart. We knew this was coming. His blood test had come back abnormal - more than once - and they wanted to ensure his heart was ok. Although they were confident it was, we weren't easy to convince. Savannah already had a heart defect and although Lincoln had been "cleared" of any heart issues at his level two ultrasound, it wasn't necessarily 100% accurate. So it was ECHO time.

There's nothing worse than waiting. As we hung out in the NICU, we realized just how immune we'd become to it all. One of nurses asked how we were doing...she commented that we seemed really calm. It wasn't the first comment that had been made. When I'd arrived earlier that day to sit with Lincoln, they had informed me that they were going to draw Lincoln's blood. They had asked if I wanted to return after they had done so or have them wait until I was done visiting. When I told them I would just sit while they drew it, they seemed surprised. My response - it couldn't be any worse than watching the drainage tubes being pulled from my daughters chest after open heart surgery - the same tubes I had even learned to help drain prior to their removal to keep the fluid moving away from her heart. The nurses had shaken their heads in response, unable to respond verbally. I wasn't trying to be smart or even funny, just stating a fact, as I seated myself to watch and wait.

The beeps, the cords - we could honestly say it didn't phase us much. They all served a purpose and, unfortunately, we knew what most were for and could even re-attach the non-invasive ones if our boy wiggled them off. As we waited for the ECHO to be completed, we struck up conversation. For the nurses and docs who were just coming in, they asked if this was our first and Rob and I looked at one another and smiled. Nope, Lincoln was our fifth. After they picked there jaws up off of the floor, we proceeded to answer the usual questions - sex, name and ages...which we followed up with the various health issues they had been born with.

We watched them. The wheels were turning in their heads. They were curious - how did we handle it? How were we doing - really doing? It's in that moment the door swings open - wide open. We share...everything. The ups, the downs. The good, the bad and the ugly. As nurses and doctors, they see one side of things. But as the parents of these children with quirks, we see the other side. As we wait, we talk. We also get a small glimpse of what God is up too and our grumbling begins to subside, at least a bit...and time passes just a little bit faster.

Empty Arms

I was trying to wrap my head around it, but I couldn't. He didn't have Down syndrome...he was just a chubby baby with a thick neck! His fingers were fine...he had just been a stinker during the Level II Ultrasound and didn't want to open his fist. All the things we'd prepared for - that I, his mother, had prepared for - were not present. Yet he was STILL in the NICU. He was being monitored. It should only be for a bit. I clung to that, knowing way down deep it was likely to be more complicated than that. It always was.

Initially, he was only to be gone a few hours. Those hours came and went. I was moved to the post-partum room. I laid there, waiting for the door open, clinging to the hope that Rob and the nurse would wheel in a little bassinet and I could scoop him up and hold him tight. But Rob entered empty handed. Those "couple of hours" were now "twenty-four hours". Rob asked if he should stay. The answer was "NO!" It was Wednesday - it was Awana night. Jeremy HAD to get his Grand Prix car registered. He would be back later that evening, but in the meantime, I was surrounded by silence. I knew family wanted to be there with me, but I just couldn't bear it. I didn't want to talk about how it would all be "ok". I was ticked and God was gonna hear all about it.

I laid there, beyond impatient. I was fuming. I was angry. I let God have it! How could He do this - AGAIN! For heavens sake, hadn't we been through enough?!?! What more could He possibly want me to learn - us to learn? Why oh why did He have to use MY kids? Wasn't there some other way? I was LIVID! All I had wanted to do was give birth, have that sweet baby boy placed in my arms and go home the next day. Was that really too much too ask?? I was in my most human state. I was being completely and totally selfish and I wanted my son with me - not in some NICU. I knew what I was missing. My arms truly ached to hold him, but they couldn't. It was torture.

Rob returned later that evening and we spoke with one of the members from the NICU. Our sweet, beautiful Lincoln was struggling. He had fluid in his lungs and they were at risk for infection, if there wasn't one already. He was dependent on oxygen. They would take additional chest x-rays and blood work the following morning and proceed from there. The doctor left the room. We sat there. We didn't have to say much to one another. We'd been here before and we were here again. Annoyed was the best word we could use to describe how we felt in that moment.

The following morning arrived. Lincoln wasn't any worse, but he wasn't any better. The day progressed. We knew we'd be there until the following day, so we began to make plans to bring in the whole family for a visit that evening. But it wouldn't happen. The NICU doctor called and informed us they were transferring our sweet boy to another hospital - within just a few hours! We looked at each other...really, God, REALLY???

In all that we'd experienced with our other children, we knew there was a purpose to all this insanity. We could feel the Lord's presence, but we were grumbling - loudly, I might add. We had no desire to be His "tool" in that moment. He knew it, we knew it and I'm certain He was getting a good chuckle as we waited not so patiently for Him to show us the "bigger picture". But He had us where He wanted us and we couldn't exactly leave, so off to the NICU we went to await Lincoln's transfer.

M.I.A.

Yup, I've been M.I.A....a "Mama In Action". I love to write. I love to share. I believe in my heart it's why the Lord chose to bless us with a semi-complicated family. Many are hesitant to share and open up and there's nothing wrong in that...especially when looking at what a roller coaster life the family living with special needs can be. It's also why I've been absent from my blog.

I've missed writing - well, the actual opportunity to write. I'm always writing...my mind never stops! But we've had a crazy few months. We welcomed babe # 5, and not without complication. We planned too move. We canceled that move. We dove head first into summer with travel and everything else that summer brings with it. My hubby has a new commute. The list could go on and on.

All that said, I've got lots to share. A few have asked when I plan to write regularly again. I'm working on it. The jump from 4 too 5 kiddos was big...HUGE to be completely honest. But we're breathing again and it feels good. The past months have not been without new adventures. Couple new adventures with old and let's just say life is never boring! Ever.

I have much to share and as I reflect on all that's surrounded us these past months - both the heartwarming and the heartbreaking - I know this - God is faithful. His existence in my life and life of my family is more obvious than ever. I've talked with Him, I've argued with Him and I've gotten even closer to Him. My heart is smiling and I'm ready to write.

Reality Check

Since beginning this blog, my ultimate goal has been to be open and honest about our life as a family with special needs. While I have attempted to keep my wording "friendly", the contents of this entry may turn the stomachs of some who read it. It deals with our recent experience with Dylan and the stomach flu. Having said that, this is a real aspect of our life and, as always, God is at work in my life.

Every now and then, I get reality checks when it comes to Dylan's development - emotionally, physically, mentally and socially. I am fully aware that Dylan ranges anywhere from a three year old to his current age of ten. I rarely think much of this range - it's simply who Dylan is. But this weekend I got a huge glimpse of where he's really at in certain areas. It's been hard to swallow.

On Saturday morning, Dylan, Jeremy and Savannah all awoke with the stomach flu. Gregory had just been through it and it was looking as if he might be the only victim. I was wrong. I woke to hear Dylan wailing in his bedroom. I opened his bedroom door and found him covered from head to toe with vomit and diarrhea...as well as his entire bed area and the floor. I soaked in what awaited to be cleaned and am fairly certain I will never be more thankful for our tile floors. Within seconds of discovering Dylan, I heard Jeremy yelling and crying from his bedroom. It was gonna be a long day. I hadn't had a chance to check Savannah but if she hadn't started in yet, it was gonna happen - soon.

I told Dylan to stay put and that I would be right back. I had to get Rob up - who, off course, was still sleeping soundly. Within moments, I was back in Dylan's room. I grabbed one of the many packs of baby wipes in our home and undressed him. I realized I had to get his feet and hands wiped down before I could take him upstairs for a shower, or else we'd be cleaning the carpet as well.

I managed to get him upstairs and handed him off to Rob for a shower. Jeremy was next. Within the hour, we had three sick siblings bathed, dressed and laying on top of blankets on the couch, with towels surrounding them on the floor. Rob collected bedding in trash bags and lined them up to be rinsed out prior to entering the washer. Things had settled, but only for a moment.

I suspected Dylan needed to use the toilet and had Rob take him. I needed to get the laundry started - I had at least seven or more loads to do. They entered the bathroom and Rob helped Dylan undress. Although I wasn't in the bathroom initially, I could hear Dylan throwing up and sensed Rob's patience was being tested. It was time for mommy to intervene. I entered the bathroom with Rob scrambling to find something for Dylan to throw up in, as in that same moment, Dylan had begun to have diarrhea - except he wasn't sitting on the toilet. Rob managed to get him seated on the toilet and I got a bowl placed beneath his mouth and then quickly ushered Rob out of the bathroom.

I knelt beside Dylan, holding the bowl in front of his face. In this moment, even though Dylan is the size of a ten year old, he was really two, maybe three, with how he was able to handle himself mentally and physically. My heart broke for my sweet boy. He was confused with what his body was doing. He was overwhelmed and could not communicate his need to both throw up and use the toilet, even though he can speak fairly clearly. He was weak and tired.

As his mother, I was overwhelmed with a wide variety of emotions. We've made huge progress in regards to toilet training Dylan, but, as I sat in the bathroom, I realized just how far off we are from complete toilet success. My mind drifted to how I had found him that morning. It was obvious that he had thrown up more than once, but Dylan did not grasp that he should go to the bathroom to throw up or poop or find us for help. He just cried.

Obviously, Dylan has Down syndrome. However, I have long suspected he has Autism as well. It is typical for individuals with Down syndrome to have Autistic tendencies, but some do have a medical, dual diagnosis. No, Dylan doesn't have an "official, dual diagnosis", but I know in my heart he likely does. Whether or not we should pursue the "official" title is debatable. Dylan already receives all appropriate services and many of the techniques used with Down syndrome are the same ones used for those with Autism.

Many of Dylan's peers also have Down syndrome and there is no doubt they are all very different in their development. However, many of the areas that Dylan continues to significantly struggle in are areas that many with Downs begin to out grow by his current age of ten. In the research I've done, these areas are more "Autism related" than "Downs related". My experience with Dylan this particular morning was no exception.

After Dylan finished using the toilet and stopped throwing up, he got up. I got him cleaned up, re-dressed and settled back on the couch. Now it was time to go back to the bathroom and begin cleaning it. As I scrubbed the floor, toilet and removed the rugs to be washed, my heart sank and reality hit. Putting Dylan in underwear and sending him to the bathroom completely on his own is still very far off. His ability to handle himself when severely sick is even farther off.

As the morning progressed, I continued to get reality checks. I rinsed out all bedding and clothes and had specifically decided to do Dylan's last. As I began to pull his bedding from the bag and rinsed them, I finally came to the last item - his sheet. It was covered in diarrhea, and honestly, I don't know how it happened, as Dylan was fully clothed when I found him. I looked at Rob and said, "I just can't do it. I don't have it in me to rinse this sheet out....again". Into the trash it went and a trip to store would come later that day. I knew it wouldn't be the last item I'd throw away due to a massive Dylan accident. I always salvaged what I could in situations like this, but I have thrown away numerous clothes, bedding and linen items over the years. He even managed to destroy two playpens by the age of three due to accidents.

I thought of my other children and their development. Jeremy is six and is quickly learning that when he has the stomach flu, his goal is too aim for the bathroom or nearest container. Greg practically potty trained himself at about age three, so he's not far behind, and Savannah is just where I'd expect her be....and this is the same spot where Dylan is, which tears me up.

With each passing day, Dylan grows - sometimes by leaps and bounds, but more often in baby steps. I find myself questioning myself and wonder what more could I be doing - I want to be the best mother for him. I know the Lord chose to place each of my children and I together for a purpose and I ache to see the bigger picture, especially when I reflect on the moments I've described above. But that's not possible. All I can do is push forward and have faith that the pieces will continue to fall into place, just like all the other pieces I've seen put together in the past ten years.

Three Picture Albums

I imagine he's seated across from me. Between us lay three picture albums. The first is full of pictures showing a boy who is growing and thriving and, in the world's eyes, is perfect. He is a picture of excellent health. It is clear he is mine - his physical features resemble those of his siblings and parents. He is surrounded by love, joy and peace. This boy is the desire of my heart. He is not made fun of by those who live in this world with him. He does well in school - he has favorite subjects, but can pass them all - even those he's not so fond of. He can ride a bike, jump, skip and hop. His fingers hold a pencil without issue and his penmanship is nearly ideal. He eats and drinks and pizza and sweats are always a hit....he is a kid, after all.

The second album show pictures of yet another boy. The life he leads is far different than that of the boy in the first album. His physical features make others take a second glance, but generally not in a positive way. He is often criticized and, while they refrain from saying it aloud, they question whether or not he should have been born. He suffers from frequent colds in the winter. He enjoys school and loves his friends and teachers, but academics are challenging. He spends hours practicing how to hold a pencil, pronouncing words correctly and needs full assistance on the swings...pumping his legs is simply not something he can do yet - and it's hard to say when that day will come. He enjoys mealtime, but it's not without challenge...his protruding tongue pushes the food out, although he works hard to keep it in. There is no doubt that the simplest, day to day activities are a struggle for him. But he is loved and happy. I ask the man before me where his family is, but I am told it is yet too be decided.

I open the third and final album. I flip through it - twice. But the pages are empty. There is not a single picture in the entire album. Confusion overcomes me. I look up and stare at the man seated across from me. As I stare into his eyes, I understand completely. I remember a discussion we had years before - about the little babes that begin to grow within their mothers womb. These mothers are faced with news, but it is unwelcome. These mothers do not know the man seated before me. They are given one-sided information. They are given choices, which may result in empty picture albums. Some of these children are walking on streets of gold, others are bouncing around from home to home, their final destination unknown. I remember what I told him, what I said I was willing to sacrifice if he would give me that child, so that it may know pure love and acceptance, regardless of the "imperfections" that exist.

I look down at my growing belly and place my hand upon it. I stare as I feel the babe within me move about. While I know his over all health is good, I can not yet see the pictures that will fill his album. I know the desires of my heart and so does the man seated before me. I love this child, completely and unconditionally. I have no idea what the future holds for this unborn child - and won't for nearly four more months. As I look to the future - the unknown, I have a choice to make. Will my mind be consumed with "what if"or "your will be done"? There is no doubt it will be a daily struggle - it already has been. But as I lift my eyes from my belly and rest them on his, I am at peace.

On occasion, my eyes drift away and in those moments I am overcome with fear, anger and frustration. I remind myself to place my eyes back on him and the moment I do so, I am once again overwhelmed with his peace. I again feel joy and excitement towards the birth of my unborn son. No, I have no idea which picture album will be added to our family shelf, but I do know that whichever it is, the pictures within in it are perfect. It is a choice I must make daily, but if I take it one day at a time, as difficult as that may be, triumph through him can prevail.

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.

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.

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.

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 fashion...so 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 cards...it 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.

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 dealt...at least, not yet!

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.

Parenthood

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!

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.

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.

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.

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 WILL...be avoided!

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!

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.

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.