My little ball of energy turned SeVeN years old last weekend! This collage above shows his personality perfectly. He is one funny and spunky kid and I sure love him!
I'm not sure why, but I get teary when I think back on those first few days of his life. The second this little one was born, our little family changed forever. Look how excited KJ was to have a little brother. And what a good big brother KJ has been to sweet little Jack. I'm so glad they have each other.
Bear with me as I type some of the thoughts that are running thru my head tonight.
Exactly 7 years ago my newborn was in the NICU at the hospital. I was an emotional wreck because the Doctors and Nurses weren't able to give me any answers as to why this precious little baby's body was shutting down unless he was hooked up to IV's. Walking back and forth to the NICU to hold Jack was quite the task as I had just had a C-Section and walking and standing was pretty dang painful. That did not stop me. I was there as often and as much as I could handle. I hated it when the 'visiting' hours were over and I had to walk back to my little lonely and cold hospital room for the night. I remember feeling helpless but trusting in the Doctors to find an answer. They did. My 'perfect' little baby was diagnosed with MCAD the shortened version of Medium Chain Acyl-CoA Dehydrogenase Deficiency Disorder. Try saying that ten times. Basically a rare metabolic disorder with the main problem being that his body can undergo metabolic acidosis and hypoglycemia if his body goes too long without calories and eating. He cannot fast. And cannot handle the Flu on his own without the help of IV's. He wasn't getting enough milk in his first few days of life. Hearing this was devastating to me. I'd like to say I was strong and glad to have a diagnosis, but I wasn't. I cried. I wanted to be alone and I didn't want any extra attention. Being hormonal probably didn't help either! It's hard to hear that your baby has something wrong with them. All any mother really wants is for their baby to be healthy. We had lots of trips to Portland where he was seen at OHSU. He saw the regional metabolic specialist there and he was able to answer hundreds of questions that I had. Each visit, I was more and more confident that Jack would be just fine. I'm curious if the Doctor secretly laughed at some of my questions. I literally brought a spiral notebook with pages and pages of questions for him. He was very patient with me and I always left reassured that everything would be okay. One blessing in disguise was that if I would have had Jack naturally (not C-Section) I would have been sent home the day his body began to shut down. There have been a lot of SIDS cases due to metabolic disorders and I was SOOO blessed that we were right there in the hospital and in the good hands of his Doctors. Anyway, back to OHSU...
on one of our visits to Portland for more testing I was particularly 'down' after being up every hour or two for months trying to force feed him so that he wouldn't crash again. I was bitter and crabby. You'd be surprised what months and months of VERY little sleep can do to someone. It definitely messes with your mind and ability to think rationally. And to top it off, Jack was NOT an easy baby. As I was waiting in the Pediatrics ward waiting room I began to take a look around me. I don't remember a lot about his first months of life, but I remember this very moment very clearly. At that very moment, I was slapped back in to reality. I saw children there with severe handicaps, babies with feeding tubes, children bound to wheelchairs and oxygen, kids hooked up to IV tubes, bald little heads of children who were fighting cancer and I remember looking down at my little Jack and feeling embarrassed of the thoughts and feelings of bitterness that I was harboring. I had my battles, but they were NOTHING compared to what some of those brave children and parents were battling. It was one of those 'Ah-Ha' moments in life that Oprah always talked about. I suddenly felt a rush of guilt but mostly gratitude that my little guy wasn't in constant pain, that his disorder was manageable, and not immediately life threatening. I would never again live in my own pity party.
Then 4 years later, I found myself once again in a different kind of waiting room. A waiting room I had been on a waiting list for months and months for. It was the waiting room of a behavioral specialist. The BEST in the region. Once again frustrated that after 2 years of INTENSE and VERY EXPENSIVE private therapy, lots of medical bills, daily therapy appointments, meetings with dietitians and allergists, Jack still just had a diagnosis of PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). I wanted answers. I wanted a real diagnosis. I needed to know how to move forward how to help Jack progress to the best of his abilities. How to live a life without debilitating tantrums and fits that could happen over the very slightest things. Once again, I had to put my faith and trust in the hands of the Doctors. And while I knew he had some sort of developmental disorder, hearing that your son has Aspergers was still pretty tough to swallow.
All you really wish for your children is for them to have a healthy, normal, happy, productive life. We just had a little detour. But I know that he can and I know that he will have a very fulfilling life. He just needs a little extra help, a little more persuasion, more pushing, a LOT more patience and love, and a mom who will do whatever she can to help him get there. I know that I have a lot of "mama bear" in me. I especially do when it comes to Jack-Jack. There have been times at the park or school or even in McD's play land where I've wanted to tear in to some mean and ignorant children AND adults. But hey, that could have been me a few years earlier, before my perspective on life was changed by this diagnosis. I've learned after dealing with this for a couple of years to quietly try to resolve the problem and walk away. Usually after I walk away or get in the car to leave the tears start falling. I do not like it when Jack is singled out and treated differently or I am told to 'get control' of my child. Each year that Jack gets older this happens less and less and I am so grateful for that. But kids can still be pretty darn mean. I'm sure he'll have to deal with this for years to come. Especially socially speaking. But Jack makes me so proud. He has made leaps and bounds. He has progressed more than I could have hoped for! He is now reading simple books! I cried with happiness the first time he read his first page of Dr. Seuss. It was a milestone I will never forget! You know the phrase, "It takes a village to raise a child"? This is more true for Jack than anyone else I know. He has had so much support from family everywhere we go. He has had access to the best therapists around. He has seen the best specialists. He has been in such good hands.
Jack makes my life feel complete. Even after I get frustrated that he doesn't do things the 'normal' way, he still knows how to make me laugh at least a few times a day. What better gift is there than that? This may be wrong for me to say, but out of all my children, I miss him the most when he's away. It's as if he takes a piece of my heart with him wherever he goes. He has taught our whole family the art of patience, he's taught us the invaluable gift of accepting other's differences, tolerance, strength, and he has truly blessed all of our lives. I know he was meant to be my son. I wouldn't change a thing. Except for maybe all those times he's had to be poked and prodded in hospitals and Doctor's offices. I could do without all those darn hospital stays. :)
Jack is strong.
He is determined.
He is stubborn.
He is hilarious.
He has a good memory.
He finds joy in simple things.
He is a very loyal friend.
He can beat any teenager on the Wii.
He loves to cuddle.
He is inquisitive and will ask questions I don't even know how to answer.
He loves babies.
He loves Spiderman.
He loves routine.
He is a master on the monkey bars.
He is fearless and will leap off the high dive or ride over the dirt bike jumps, but is scared to death of bees and grass. We are working on that one.
This year his goals are:
To learn to tie his shoes, and put his shoes on the right feet.
He wants to swim 25 meters freestyle.
He wants to learn to skateboard.
He wants to take piano lessons. :)
He wants to try playing a new sport.
I hope that of all Jack learns this year, the one thing he knows for sure is that his mom loves him to the moon and back. Always. He will always be my little miracle baby. My tiny cuddle bug who shares my love of music and dancing. I just know that this will be a great year for him.
We were able to have a fantastic birthday party for him this year. He chose to have his party at the Bowling alley. It was also opening game day for the Ducks so his special day was jam packed full of all things good. We had a great group of kids there. I was worried as Labor Day weekend can be tricky for having a party as everyone seems to be out of town!
BOWLING
PIZZA...CUPCAKES...GIFTS...THE CREW
THE ARCADE
DUCK GAME AT PAPA'S HOUSE!
His real birthday was the next day, Sunday.
Breakfast in bed.
Yes, you're seeing green eggs. That's his favorite way to have them. Gotta Love Dr. Seuss.
We let him pick one present to open in the morning before we left for church. He picked to open Grandma and Grandpa Howard's gift. A ball tag game. He loved it! Olivia and KJ fight over who gets to play it with Jack. :)
One of Jack's goals for this year is to learn to skateboard. He wants to skateboard to school but had to have a skateboard small enough to fit in his cubby. He was pretty excited.
I committed a cardinal sin, I gave in and bought him a BSU shirt. I may be disowned by my dad. But how can you say no to this adorable face? Now he can 'fit in' with his friends at school when they all wear BSU gear on game days.
What's a birthday for Jack without a new Wii game?
HAPPY 7TH BIRTHDAY BUDDY!
We hope it was an unforgettable day!
