Wednesday, October 26, 2011

Lesson 596 that Jack has taught me

I know for many of you who don’t have kids with disabilities you look at our life and wonder how we do it. It’s like breathing to me – don’t even think about it. And honestly, I feel so incredibly blessed. I am not shy about sharing the ups and downs of our lives, and I share triumphs and struggles pretty equally. But I must say, that every single day I thank God for my son. I thank God that he made him the way he is – and still the battle continues. It’s difficult some days knowing that because your son has one extra chromosome he has certain medical problems. That because of one extra chromosome people look and treat him differently, that because of one extra chromosome he will most likely develop alzheimer’s in his 30s. There are many things about Down Syndrome that are hard. And then there are things that are huge huge blessings. And the mix of the 2 makes our life unique and precious and teach me levels of love that I didn’t know existed.

Over the past few weeks, Jack has had some trouble breathing at night. He wakes up gasping for air – we dart into his room and hold him. Daniel and I both are shocked to our core and immediately hold on to him and bring him to bed with us. Putting him back to bed is not easy. The monitors are up as loud as they go and those nights we barely sleep. I looked at D last week during one of these episodes and said “this is one of those moments when I hate Down Syndrome”. That was true. I knew that one extra chromosome caused smaller airways, an enlargened tongue, touching tonsils, etc. And even still in those moments – we will go to dr and see what we can do to help jack breathe easier (ie – surgery in a few weeks) - I still wouldn’t change my son. I believe that God made him the way he is without flaw and purposely. And I believe that in the midst of the hardness and struggles that having DS brings - there is purpose.

Purpose revealed:

We teach Jack signs. He signs a lot. He babbles and can say some words. For example he signs “please” and makes the “ss” sound when he says it – pretty cute. He signs and says “Dada” clear as day (my heart melts each time – so grateful he and Daniel love eachother so well). He signs and says “doggie”. He makes the “p” sound for “play”. I could go on and on – he is trying to communicate and he does communicate. I am still waiting on Momma. I get it a couple times a week – sometimes every other week, and when he says it I could cry each time. Not sure why I am being made to wait for it – but I am. So I will wait. We started teaching him to sign “I love you” with one hand a week or 2 ago. He signs it with his index and middle finger up – giving the peace sign – quite appropriate for I love you I think. It’s the cutest thing. We say I love you Jack and he signs back with his hand I love you. Most 2.5 year olds can say I love you. Micah says I love you to Daniel. I wanted to communicate this to Jack and him to be able to communicate it back. Over the past few days, he has been trying to say it. He says “woo woo” with his mouth practically closed as he signs it. It is the sweetest thing ever. We both smile and laugh when he says it cause it’s so cute. He has the sweetest voice and disposition and seeing and hearing him say those words makes me melt. Yesterday after getting home from work we sat at the table to eat dinner after me trying to get him to walk, just me and Jack. (We have been working on walking for a while – and Daniel and I are both ready and eager for that day.) OK Back to the ‘I love you and momma’ - We were eating and working on different words and I was telling him that we had to work on walking - he was being silly listening to me babbling on. He said momma a few times and kept trying to say “I love you”. I wouldn’t trade that moment for anything in the world – not even a clear “ I Love You”. “Woo woo” is perfect. He has said it a few times, but the timing during dinner was perfect. I hugged him and thanked God that I have such a sweet boy. I keep thinking about it today. I keep thinking/wondering if he knows what he is trying to say. I hope we are showing him a good example of “I love you”. I’m so thankful for my baby boy. I’m so grateful our life is slower. I am on his pace now and when ‘typical’ kids are around I feel so rushed cause I am so used to slowing things down for Jack. I love our life. I love my son. And the ebb and flow of the struggle with DS will continue. I’ll curse and be mad and then God will remind me of the incredible journey I am on and the blessed life I get to be a part of. So grateful. My cup overflows over and over again with love for him. I can’t imagine him any different, nor would I want to. And so grateful Daniel is willing to slow down with us. Jack has taught me so much. He has taught me that the things many people hold dear, myself included, aren’t dear at all. It doesn’t matter if you walk or talk 1st, it doesn’t matter if you are the cleanest eater in the world or if you know how to play appropriately with a toy as soon as you see it – love is the most important. Smiles, Laughs, enjoyment of those you love. Jack loves 1st. He’s not bound by what people think of him or what he should or shouldn’t be doing – he want to laugh, cuddle, enjoy. He doesn’t care if he gets food all over him when he eats or if his splashes in the tub get someone wet – and I don’t care either. I bring extra clothes cause I know he’ll make a mess and when he’s in the tub I let him play and worry about the mess later. I let him go down the slide face 1st cause that’s the easiest way for him and casue it’s not hurting him or anyone else – I let him do that even if other parents tell their kids no. Why should I make going down the slide work for him or hard on him when it’s play time. Why is there an appropriate way to play? Some things are just more important. I feel like he knew that communicating ‘I love you’ was way more important than walking (which is what he have been working on for months). And once again, my son has taught me a valuable lesson and a deeper meaning of love. And once again reminded me that yes – the medical stuff is hard – but the love overrides all of that. And that sometimes the balance between work(learning to walk) needs to wed with more love and more enjoyment and more patience. So we continue on our journey…

Monday, October 17, 2011

I only write once a month really now. Life is too busy to write more. And my free time would rather be spent with the most wonderful man and boys in the world. Jack is doing pretty well. We are still working on the amount of food to give him and when to stop. This is really hard. For parents of typical kids, I assume you know when your children are full cause they tell you- or same thing when they are hungry. But with Jack he can’t communicate and honestly I am not sure he knows. I am convinced he thinks he is hungry all the time. We try not to eat unless he is eating and space out his portions so they last as long as we the time we are eating. But my heart breaks when he wants more and signs “more please” and I have to say no cause I know he’s had enough and then he starts crying. So very hard.

Walking – we are getting closer, if he could keep his upper body from propelling forward then I think he would be walking. It’s basically the balance at this point that is holding him back – so we keep trying each day. Soon. Soon he will be walking and I will be missing seeing that precious bear crawl.

Talking – we are teaching new signs each week – this week we are working on “help” and “soup”. I choose signs based on what he needs to communicate. So to me – teaching colors right now aren’t as important as him telling us he needs help…and soup came from the fact that I made a huge pot of chili yesterday that we will be eating on all week – so he needs to know what “soup” is. There is no sign for chili that I have found  Jack still says words and tries to imitate just about anything you say. I love his sweet voice. My heart melts every time he says something. We have taught him the sign “I love you” and it’s absolutely precious.

The 1st bit of chilly weather has come through brining congestion and a couple sleepless nights. I am pretty sure he might have sleep apnea and am hoping to get him tested soon. He wakes up at night wheezing cause he can’t catch his breath. It’s the scariest thing in the world. We are trying a humidifier which is what I have used in the past, but it still seems worse than it’s been in the past. I am terrified we won’t hear him one night – and he doesn’t know how to help himself at this point. I know it’s a mixture of tiny air passages, congestion and enlargened tongue. Friday night when we brought him in bed – Daniel was holding him after an episode and I said, “there are moments when I hate Down syndrome”. It’s the medical part of it that sucks. When you know that if his tongue wasn’t bigger he wouldn’t try to swallow it – if his airways were larger he wouldn’t stay congested – and you know those 2 things are because of a freakin extra chromosome. Those moments are hard. And I try to remember that it could be so much worse, but when your child is having a hard time breathing – it’s hard to be rational.

Which brings me to another point – the wonderful man, dad and help Daniel is. I’ve never had anyone wake up with me when Jack is sick, or having a hard time breathing, etc. Daniel has been incredible. He loves Jack. He. Loves. Jack. I can’t tell you how incredibly happy this makes me. I love that he accepts Jack as he is – pushes him to do things and at the same times understands that some things are going to take longer. I love that he plays with him, wants to cuddle with him, and talks with me about ways we can help him. I love that he isn’t embarrassed of him and doesn’t make excuses. I love that he doesn’t baby him but also knows when he needs a break. I have never had this. Jack has never had this. I wish I could put into words how wonderful he has been…but I can’t. I feel like he should have been Jack’s dad all along. And I love him so much. I feel so blessed. I am so glad Micah and Jack have Daniel in their lives. What a blessing for them. And I am so happy I get to watch them get to experience the love of a dad in action. So amazing. We get Micah this Friday and I can’t wait. I love to see him and Jack play and I love to see Daniel with both of them. It’s nice to be so happy and content. Very grateful.

Here are some pics from this past weekend:

D and Jack having some pancakes Sunday morning – such piggies.

Jack sporting his Cardinals hat!!! GO CARDS!!!!! I can’t be we are World Series Bound!!! WAHOO!!!

Jack with the neighbors – Mattie, Amber and Jamie – love the neighbors around us. All of them have been so wonderful. And Jack has so many ladies to choose from!


D being Silly with Jack

Have a great week!!