Thursday, November 17, 2011

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!!

Wednesday, September 28, 2011

An update finally :)

September 28, 2011

I can’t believe it’s been a month since I have updated this blog!! I assure all of you we are doing just fine. Thank you for your facebook messages and emails checking in. The wifi at the new house isn’t that great, so it’s hard for me to get online and there is only so much I can do on my iphone. This will be a lengthy post since it has been so long since I have written anything. So…here goes.

We left St. Louis Labor Day weekend to begin our new lives in PA. Bittersweet doesn’t even begin to describe the emotions surrounding our departure. In the week that we left we said good bye to therapists, co-workers and friends, friends that have become family and a familiar life and city.

Girls from work - greatest CRAs in the world.  Love and miss all of you!!

Jack's therapists, an emotional night:

Last girls night at Chava's:

Jack and Uncle Chad:

And Jack and his beloved Lo Lo - leaving her was the hardest part of our move by far:

 I never thought I would be a city girl, but I must admit the conveniences of a large city were nice. I miss the city and the people very much. I would give anything to sit on the couch with Lo and Chad or walk around West County Mall or go get some FroYo. PA is quite different. It’s gorgeous for one – St. Louis is all city – not much landscape, so being in a city filled with green, mountains, fields, smaller buildings is quite nice and reminds me of home (TN). Jack has adjusted well to the new atmosphere. He has grown to love the dogs and when we are in the car he just stares out the window. I think he is completely taken by the cows and corn fields and lack of pollution - lol. Def pros and cons to every place. He is at a daycare during the day and so far seems to really enjoy it. Of course, I call non stop to check in on him, but he seems to be happy so that’s really all that matters. Living life with someone again is odd and good at the same time. It’s weird, but I feel like we should have been doing this all along. We, Daniel – Micah – me and Jack – are a little family. When Micah isn’t around and is with his mom it feels like something is missing and when he is around the puzzle is complete. The boys are a riot and I give props to you moms out there with multiple kiddos. We are exhausted after a weekend with 2 two year olds.

Painting - complete mess:

And learning how to discipline and love them equally is not always easy – well loving them equally is, but the disciplining is hard and something D and I are learning to navigate. And while it’s so nice for Jack to have a brother and someone to teach him things, it’s hard. It’s hard because Micah talks and walks and says “daddy” and “I love you” and “my tummy hurts”. Jack communicates but it is very basic. “More, All done, Hi, Bye, Eat, Drink, Food, Banana, Ball, Play, Please, Thank you, Chicken, Candy, Cookie, Cracker, Fruit, wash, etc” These are the words/signs that are used most frequently he uses to communicate. So when I hear sweet little Micah’s voice tell Daniel that he loves him, a war goes on in my soul. I am completely mush at hearing how much he loves his daddy and how much his daddy loves him and I am jealous as well. I know Jack loves me, but I can’t wait to hear the words. I can’t wait to hear Mommy all the time. I find myself longing and yearning more than ever when Micah is around – not yearning for Jack to be different – but yearning for the day when he and I can communicate with Jack like Daniel and Micah do. I know it will come, but being hit with it right now for the 1st time really. It’s hard. Lots of tears and prayers.

 I met with a new PT last night and she was great. I think she will do a wonderful job and I think Jack will love her. I meet with a special Instructor/speech Therapist next week so we will see how that goes. So much newness and change. I miss my girlfriends. I really really miss my girlfriends. I miss going to Jamie and Eric’s and talking on their floor while the kids tear up the place. I hope and pray for friends like them and so many others here in Easton.

And I thank God every single day for bringing me through this past year. Do you realize that a year ago right now – Sept 2010 – I was barely holding on? I was relying on my friends for their hearts to give, cause mine was completely broken. My life had shattered in a million pieces and I wondered if I would ever be happy or content – if we would ever find love – if I would be on this journey alone – and look what God has done. He has truly binded up my broken heart. I feel like I should write a book. I wish I had words to express my gratitude to all of you who held my hand, played with my son, hugged my neck over this past year. My cup overflows over and over again with love for all of you and gratefulness for all you have done. Jack and I are better people because of all of you.

And my sweet Jackers. He is starting to test his limits and get into mischief. It’s funny, hard and good at the same time. There are moments when I have to turn my head to laugh cause his madness is funny. There are moments I want to run away cause I don’t know what to do or because I am tired of hearing “aaaah” and there are moments when I am so glad he is being defiant cause it’s a sign of progression and understanding. However, I am used to doing – disciplining – all alone and while it’s nice to have help it’s also hard to accept help. If Daniel looks at Jack wrong, Jack puckers out that lip and starts crying and the mommy in me wants to grab him and hold him tight. He isn’t used to a man or a man’s voice – and I want to comfort him. So finding the line and boundary there is not easy. Lots to learn here. Lots to think about and lots to adjust to. But we are happy and are a family and are truly blessed to be where we are and be who we are with. Daniel is an incredible dad and man. He works so hard and is so thoughtful about how he parents and how he loves. He makes me laugh every single day and accepts and loves all my goofyness. I can't believe how much I love and care for him.  In love doesn't begin to describe how I feel. 

Jack attacking D - he loves his wiskers :)

This past weekend we were on the couch holding the boys and Micah was talking away. I started crying. Daniel kept asking what was wrong and finally I said, “I wish I could talk to him (Jack)” I cried and cried and squeezed Jack. Daniel said, “you have an amazing son and he will talk to you soon and he knows that you love him and he understands the things you say. He will get there” wow. Thank you God for a man like him to speak and say those things to me when I need to hear them. And then he hugged me and told me he loved me and Jack. Graciousness. Humbleness. Love. Peace. This is our life. This is what I have prayed and longed for. Now if only I could find some girlies to dance and drink margaritas with!! ;)

Sweet boys and the dining room that we made into a playroom - what in the world would we do with a dining room - it would just collect dust, so playroom - welcome.  Lots of laughs and blood and scrapes and pee and poop will be had in you :)

Monday, August 22, 2011

So Proud

I haven't written in a while - been pretty busy I guess.  But I just wanted to say how proud I am of my son.  I was thinking back to a year ago and how much he has grown in the past 12 months.  Did you know that one year ago he couldn't sit up on his own without support?  And now look at him - almost standing.  He wasn't saying any words and now he has many.  I just can't believe how much has changed in 1 year.  I keep thinking about the future.  I read articles like this one:

And I am inspired.  I want so much for my little Jack and if the past year has taught me anything it's that he is 100% capable  - not that I ever doubted that.  And even if he weren't doing the things he is doing now, I would still be proud.  We celebrate the big things like most people, but sometimes the "little" things  - like waving bye bye or picking up food or recognizing your name are much bigger to those of us with children with special needs. We wait so long it seems to see that wave of a hand, or hear mama, or the ability to hold a bottle or cup.  But it is worth the wait for sure.  The journey makes the result so sweet.  His sweet little voice brings tears to my eyes every time he tries to say a new word. And when those little chubby wrists and stubby fingers wave bye bye something happens inside me.  My heart skips a takes over and pride fills my soul.  I am proud of him.  I know how hard he works and I. am. proud.    I can't describe the love and honor I feel as his mother.  This weekend Aunt Lo LO and I took him to the mall with his gait trainer to practice walking.  That would embarrass some people, but I was beaming with joy and pride.  I didn't care nor notice if people stared in a weird way - I was way too busy being in love with my precious sweet boy.
I literally cannot describe how crazy I am about this little man and how each day he brings a smile to my face.  I am truly truly blessed and could not be more proud.  My only regret so far is that time is going too fast.  Needs to slow down.