This is a blog
about my little Jack.
Jack was born
on June 22, 2009.
We found out 5
days after he was
born that he has
Down Syndrome,
a genetic disorder.
This blog is to update family and friends of what is going on with him and share any resources I come across about DS. Happy reading :)
Jack is getting so much stronger in his core. We have been doing some new exercises which I feel like are really helping him. He can now sit up on his own for a minute or 2 before losing balance. This is huge! We have been working on sitting for about 7 months now, and are so happy to see his progression.
The magic exercise:
We place Jack on this little tray and have our hands on his upper thighs to assist if he starts to lose balance. He really has to use his tummy muscles since his feet are down and he can't fall forward to prop sitting.
Once we put him on the ground, he immediately goes to propping:
But if we dangle a toy or sing a song or read a book, he'll gradually lift himself up and then we have a sitter:
He gets a little assistance from his hand, but he is doing so much better. He'll last like this for a minute or 2 before either wearing out or losing balance. He couldn't do this at all a month ago.
If he has something around him, like a boppy, he does great with that little bit of support:
And if he has something in front of him to lean on, he'll sit up for quite a while:
And after all this sitting, he is exhausted:
We are so proud of you Magic Jack! You work so hard and bring so much joy to our lives. Thanks for teaching us to slow down and to enjoy the small things.
I feel somewhat silent. I love writing and telling stories about our silly family and updating everyone on the latest news, but for some reason this week, I just feel silent. I am not sure why.
In the past week, I think I have heard "retarded" at least 10 times used by people in the elevator at work, on the shuttle bus out to our car, at the grocery store, etc. I have also heard 2 different people in the past week make fun of someone by telling them they should ride the "short bus". I hate both words and the way people use them - I hate that our society is SO LOUD! I remember going to Romania and realizing that Americans are incredibly loud and pompous compared to other citizens in other countries. These people using these words said them so loud that everyone around could hear, and they didn't even think of who might be offended or hurt by them, there was no filter. I feel like this entire 'freedom of speech' thing has really gotten out of hand. Because now people say things and forget that their fellow humans are around and that sometimes their words can hurt. And we shouldn't want anyone to hurt. But no, we are Americans, and we have a right to say whatever we please and if someone is hurt by it, then that's their problem. What a horrible attitude to have. For some reason the "short bus" comments really stuck with me. As a parent of a child with special needs, those comments and words burn in your soul. You cringe each time they are used and they really hurt. Everyone gives excuses, but really, can't you find a better word? The short bus - I suppose those comments hurt because I hate what they represent. They represent separation. They are literally making fun of the people in those buses when they say them. Those people aren't cool enough to ride on the regular bus, so they have a bright yellow short one they have to ride on. Don't people realize how demeaning it is to say such things? And don't people see that the people in that bus are impaired in some way for one reason or another - why make fun of them? Why make fun of people who are different? In this great country of ours, where 'all people are created equally', we continue to give labels and separate. I do this as well. I live in St. Louis city - very ethnically and racially diverse - and I find myself giving labels too. It's hard to overcome labels. When I see a short bus I smile - there are probably people on there like our Jack or other friends we have met through blogging, and them I am slightly sad because I know someone will make fun of them or the fact that they are on that bus. I realize they are on there for safety and to accommodate special circumstances, and yet our society makes fun of them...why? Our society insults someone by telling them they should be on that bus. And I am saddened by this. I already feel like our family has been separated by so many others because of our circumstances. An example - I heard about research going on that is linking a higher 'risk' for down syndrome in mothers who have previously miscarried. I was interested in this for personal reasons. Anyways - I shared this info with a friend of mine, and she mentioned that she hopes that isn't true cause people miscarry all the time. She didn't realize what she was saying, I know her heart too well, but what she said without really thinking was, " I hope that isn't true because that would mean more people with down syndrome would be born". Once again the notion that people like our Jack aren't good enough and we should hope and pray for less of them. And there's the disconnect, the separation. I really really struggle with this. I know most people don't 'want' a child with special needs. They don't want one because they don't want to see their child struggle or be different or not do the things that they do. But this is folly. Why do we see success and fulfillment so narrowly. Can someone only be successful or live a fulfilled life if they graduate college, make a lot of money, have a nice home, car, speak correctly, walk, run, play sports, etc? I don't think so. I know many people who have and can do all of those things and I am not jealous of them nor would I call them all successful or fulfilled. Jack has changed us so much. He loves so well. He enjoys and soaks up life. He has the best smile and biggest heart, and yet he can barely sit up, he isn't walking or talking and he will probably never drive a mercedes. But he is already successful to us and has filled our lives with such joy. And I am sad that he has to grow up with labels and separation from teachers, school systems, family, friends, sports teams', etc. A large group of us moms with children with DS have been writing into Ellen and Oprah, hoping that they would do a show or segment on DS awareness. That we could tell stories about our magical children and the lives they lead and that this big "X" society has placed on them needs to be lifted. These labels need to go and we need to start celebrating the special gifts these people bring to our society. I guess I have been silent cause all of this have been floating in my head. And now I am done.
So much has changed in one year. I remember this time last year - Jack had just had surgery for a duodenal atresia repair.
The events leading up to his surgery were gruesome:
June 22, 2009 ( a Monday) Jack was born. We were sent home on Wednesday with what we thought was a perfectly healthy little boy. On Wednesday he was yellow and projectile vomitting. Thursday we were informed that he was jaundiced and that spit up was 'normal' and that he might have Down Syndrome. Vomitting continued, bilirubin level wouldn't drop and Saturday, June 27th, my parents left to go back to TN and that same day we found out Jack had Down Syndrome. No family nearby. Very few close friends. Hard Hard Day. Jack would not nurse, so I was pumping around the clock - he was sleeping non stop - projectile vomitting all the time (dr. was still saying that "spit-up is normal"), bilirubin level still wouldn't drop. Had photo therapy light for the jaundice delivered to our house - Jack had to wear it all the time. Had to take him for blood work EVERY single day. The days seemed to never end. Our baby didn't seem like a baby. Projectile vomitng is NOT normal. Green bile coming from your child's mouth is NOT normal - I told the Dr. this EVERY SINGLE DAY! This went on for 2 weeks, until finally we went to the ER on July 9th. That's when we found out about the duodenal atresia. July 10th - Jack had surgery. Jack and I were in the hospital for 10 days.
Jack couldn't eat for the 1st 5 days after surgery. I remember sitting in the hospital room watching Twilight and the Ellen Show - holding him as much as possible trying to comfort a hungry tummy. I was so mad at that damn pediatrician for not listening to me. I knew something was wrong with him, I knew it wasn't normal - but she thought I was a crazy new mom. Needless to say, we don't see her any longer. And since 1/3 of children with Down syndrome are born with some sort of intestinal blockage, you would have thought she would have been on the look out. I still get angry thinking about it. And I remember being thrown into survival mode. There was no time to cope, only time to get Jack well. All these people would come in the room to talk about DS, and I wanted to yell at them and tell them to leave. I just wanted Jack to be well and then we would worry about DS. Then we would start scheduling therapies. Then we would get in touch with other families. I know they were just doing their job, but that week was very hard. I was a new mom with a very sick child and no family around. That was one of the hardest weeks of my life.
Here's a pic of Jack a week after we got home from the hospital...he is very skinny and little. He dropped to 5 pounds 12 ounces after his surgery:
And here is our Jack now - 1 year later:
A chunky, happy boy. Thank you God for bringing Jack so far. I am so grateful that our Jack is well. We have been in the hospital many times for various things, but overall Jack is healthy...if we could just figure out those fevers.
Side note - for those of you who live near family or have tons of close friends in your area...count your blessings and don't ever take that for granted. Michael and I would love to have one of our family's in driving distance. The closest is 8 hours away...which pretty much sucks. So, even though they might drive you nuts sometimes, be grateful they are nearby.
That’s how I feel today. I feel overwhelmed, over-worked and exhausted. I find that I go, go, go – I don’t complain about it much because I like being busy, but right now, I feel like crying. I feel like letting it all out, so here goes.
Here are the small things in bullet points (cause I am a list-maker..remember J ) that are constantly on my mind and causing a little frustration
·Jack is cutting 2 teeth at once…not so much fun
·Jack is trying sooo hard to sit up, but his muscles give after a few minutes
·Jack is trying sooo hard to finger feed and pick up things, but his hands are so tiny and his grasp so weak.
·Jack looks as if he is trying to wave more and babble more, he looks at you with such intensity, but then the disconnect happens. The disconnect between the brain sending the signal to the hand and the hand going up. Sometimes the disconnect isn’t there and other times it is all too obvious.
These are times when I really want to yell at that extra chromosome. I want to say.. “leave my son alone!” Let him grow like he should, let his hands get bigger, let his muscles get stronger. LEAVE HIM BE! It’s so hard to see him try so hard only to be defeated. 90% of the time I feel like I am his cheerleader, encouraging him and getting excited when he does something or tries to, and then there are times when I am just so sad for him. I am sad because I can see that he wants to, but his body limits him and his brain limits him. And I hate limits. And we work against those limits. But it’s hard. It’s so very hard sometimes.
When it’s a broken foot limiting someone – you know that time will heal it. You know that one day that foot will be just fine. Well, Jack doesn’t have a broken foot that can be repaired. And I have no clue what the future holds. I know that he will be happy and be loved and that we work diligently to give him all the things he needs and we will push him to do great things and to test those limits and hopefully tear them down…but you still don’t know. So hard. So painful. I hope Jack exceeds all odds and changes the world with his smile. I hope he falls in love one day and I hope he goes to college. I hope he says, “mama” audibly. But I don’t know. None of us do. So we hope. And we pray. And we continue to love without limit.
The thing that is the MOST bothersome to me right now though are Jack’s recurring-high-no-reason fevers. For the past 6 weeks, Jack has had 6 fevers. Fevers that are 101-103 degrees. They last for a day or 2 and then are gone. They have no other symptoms other than slight fatigue with them. We have had blood work done and it’s normal, which gave me comfort last week. But then this past weekend, another fever. I am keeping a journal and our pediatrician wants to wait a few more weeks before we run more tests and I want to tell him to Kiss my !! I don’t really like our pediatrician. He is more of the “let’s wait and see type”. And I don’t like that. It has not bode well for Jack in the past, so why would it now?! And 3 times that he said “let’s wait and see”..Jack ended up in the hospital. I would switch, but I sort of think this is how docs practice now. They just don’t do a good job. They don’t go the extra mile. They just show up…look at kiddos and go home. I’ll save my post on apathy and pediatricians for another time.
I keep telling myself that these fevers must be teething related as Jack has cut 2 teeth in the past 2 weeks, although everyone tells me that teething fevers don’t get that high. Then what could it be? Jack has an incredibly high pain tolerance and I am SOOO worried that something is wrong and we just don’t see it because he doesn’t feel it. Please pray for our Jack. I hope these fevers are due to teething, but if something else is going on, I just want to know. I want to know how to help our son and get him well. I am planning to start hunting for another pediatrician…I hope I find someone who takes me a little more serious and who cares about my child’s life a little more. Wish me luck.
To sum it up, this is a non profit organization aimed at creating beauty through art..and the art they use are the stories and faces of children who face many challenges due to a disability or illness or both. They aim to come together as one to let children around the world know that they are loved and honored despite these challenges. They choose photographers around the world to be apart of this mission and our photographer was Laurie Knowling, here in St. Louis.
She was phenomenal and we were thrilled that she was so generous to photograph our son. The Littlest Heroes projects foots the bill for the session. After your session, you create a bio for your child/hero and then eventually they will be featured on the website as a hero for all to see and celebrate. You can also keep the photos and order more if you choose.
Here are some of our proofs that we have so far:
We love them all! She did such a wonderful job at capturing us as a family, and especially capturing Jack! I encourage those of you will little heroes to go to the website and apply for your hero to be featured. We will cherish these photos for years to come and we can't wait to share our hero with the world!
