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.