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!!

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 :)

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:
http://www.postandcourier.com/news/2011/aug/21/disabled-reach-college-dreaams/


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 beat...smile 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. 

Question

Hello dear friends.  I have a question for all of you who have kiddos with DS.  Does your child always seem hungry and never seem full?  Jack is very active and I know he gets enough to eat, but he seems to want to eat all the time.  He gets upset when eating time is over.  His basic diet consists of: homemade whole grain blueberry pancakes - no syrup, bananas, oranges, apples, strawberries, sandwiches, goldfish, chicken, turkey, pasta, peas, carrots, and lots of other normal things. I try to make sure his portions are correct for his size and weight and I know he gets enough food.  But I wonder if he lacks the ability to know when he is full. I have been researching this online and haven't found much to help me understand.  When we are at the grocery store he goes nuts, wanting to eat everything in the buggy.  He will sign every food he knows and fusses when i don't give in.  Same thing at home   - I've had to gate off the kitchen cause he will go in there and beat on the fridge and pantry.  This could be typical 2 year old behavior but I am just not sure.  Any thoughts?  I have read that people with DS have a lower metabolic rate and therefore need less calories to avoid obesity. It's so frustrating and since 90% of the signs and words he knows have to do with food I also wonder if he wants it all the time because that's what he knows to communicate.  We, of course, work on tons of signs and words, but I feel like if I had an explanation I would feel better and not like such a poopy mom.  Any thoughts, ideas, similar experiences?  Feel free to throw anything out there.  Thanks!!

Moments

There are moments, words, phrases that stop you right in your tracks occasionally.  Sometimes they are good making you feel incredibly grateful...others are very sad reminding you to be strong and then there are the few that seem to do both.  I've had 2 moments like this this week.  These are moments you don't plan and definitely don't see coming.  They tend to take your breath away and teach you a lot.

Moment 1:
One was a patient - a man in his 70s - told a week ago that his cancer was curable, but this week another spot was found - and this one spot meant that he was looking at a year left on this earth.  He and his wife have been married for 51 wonderful years as he put it. She wailed, she sobbed and he held her and said, "honey I love you - we are going to be fine".  I tried not to cry.  I did though. When you are in the presence of such love and care, how can you not.  They wanted more time together after 51 years.  They couldn't imagine only having 1 year left.  Damn cancer - we hate you.  I left clinic that day and cried and cried.  I envied their life long love and learned an important lesson from them - True love never ends.  True love does stand the test of time and illness. True love never fails.   I was honored to see their love - to feel it and I can only hope that life leads me in that same direction and I think it is.


Moment 2:
Girls night with my married moms.  My other girl friends aren't married - hence the "married moms" title.  It's a blessed group.  We've only been able to get together a few times, but the times we've had have been wonderful - a blessing.  Tears have been shed, hugs have been given, prayers have been prayed and then there is much much laughter and joy.  We share our funny stories, sad stories and each time when I leave or they leave I feel lifted up in some way - overjoyed that I have such wonderful women in my life. Last night we all got together.  We said good night to our littles and opened a bottle of wine, baked brownies and sat around in our pjs to talk about life.  The moment that came wasn't from these glorious women.  It was from the offspring of one of them.  Sweet little Shepherd.  (Lindsey I know you are holding your breath right now - but let it out - it is good).  Shep was talking with me and Jack right before I put Jack down.  We were just playing  - talking about wish lists, super heroes, etc and he was hugging Jack non stop as Jack was so kindly swatting his hand away.  A very playful, fun interaction.  And then out of the blue, Shepherd looks at me and says, "does he have a dad?"
Wow.  Silence.  Take a deep breath.  Don't cry.  seconds passed that felt like minutes and I finally responded - Shepherd said OK and went back to playing like it wasn't a huge question - kids are that way.  It was just a simple question for him and I felt like he just wanted to be sure.  God the Father? was Shep talking about him - no he wasn't - he is 4.  He was thinking "I always see this woman with Jack, so where is Jack's dad?"  9 months ago that question would have sent me to bed bawling out of shame, disappointment, fear, anger and hopelessness.  I wouldn't have been able to answer.  I would have squeezed my Jack reminding him that I would try to be both.  I would be mom and dad and that I was so sorry.  Jack does have a biological father, but a dad in the way Shepherd was asking - no - he didn't, not until recently.   But look at what a year has brought.   And so I answered in confidence - "yes, yes he does.  His name is Daniel.  And he loves Jack very much".

2 very different moments, but very special ones I will not soon forget.