Wednesday, October 8, 2008

Spoke to soon ....

Ok so as usual I spoke to soon.... Adam DID not sleep last night. He slept the first part of the night, but has been up and down since about 3:00am. We never know what causes it. I wish we knew! Over the past 16 months we have diagnosed it colic, reflux, nightmares, unable to get into REM sleep and he gets woken up, sensory issues .... the list could go on. Doctors do not seem to understand when we tell them he does not sleep. His genetic doctor did mention melatonin, but I think Adam might still be to young for it. As much as I hate to admit it , benedryl sometimes works!
He was such a happy boy last night when he got home from grandmama's. He was watching all of us and all the activity going on around him! He loves to see Max (the dog). Jake and Matt both were so glad Adam was home. Jake is so funny trying to carry Adam around. They both look awkward!
I have to put on my bad mom hat this morning! Poor Jake was trying to tell me something and I totally lost my cool and yelled "JUST GET DRESSED!" I feel so guilty now. I did apologize to him and let him know that I did want to hear what he had to say, but at the same time we were running late and he needed to continue getting dressed. I am not sure how we were running late since I have been up since before six, but we were! By the time you make breakfast for Jake and Matt, breakfast for Adam, feed Adam, take the dog out, clean up breakfast, make lunch, everyone get dressed, hair brushed, teeth brused, backpacks zipped, lunches in backpack and oh yeah - I do have to be dressed and presentable for work, also Adam bag packed since my mom was keeping him today, dog put up and out the door - I do not know why I would be running late anywhere! I know most moms feel that way in the morning, whether you have 1 child or 3! whether you work or don't work.... School mornings are just hectic!

Tuesday, October 7, 2008


Adam slept through the night for the FIRST Time in 16 months on Saturday night! I did not know whether to laugh or cry. It freaked Craig and I out totally! I have told everyone I know that Adam slept through the night. They look at me like I am crazy. I do not think that anyone really understands that he have NEVER slept through the night! I think people, friends, family think we make it up. Everyday at work I have someone talk about how tired they are. I do not think they truly understand what it is like to never get a full nights sleep. We have been very lucky that my in-laws have kept Adam once or twice every week for almost a year. One for us to get sleep and for Jake and matt to get sleep. My mother in law keeps Adam two days a week while I work. As much as we miss him, it does help in keeping some normalcy to our life.
I have been with my two best friends a lot over the past few weeks. We all have kids the same ages. They both had babies in Jan and Feb this year. Both babies are passing Adam in all the things they can do. That has been really hard. They are both crawling and pulling up and moving around so much more. I am happy for my friends, because both these babies are precious! They are the only baby girls I have in my life and I enjoy them, but everytime I am around them I realize more and more how delayed Adam really is.... how do I change this , what do I do to help him. We work with him on a daily basis, but he is just not getting more mobile on his own.
He is getting more verbal. He has now started squeezing me and biting my shoulder if I do not do what he wants. Now the biting is not a good thing, however, I am so excited he is trying to communicate with me! Yay Adam!

Tuesday, September 30, 2008

Adam just finished OT again. Our therapist has met another therapist who knows more about WS. That makes me feel a little better. We have been working on lot of things, but now I think we will know a little more about what to concentrate on. Adam needs to learn the basics that most babies are born knowing. Adam can roll over, but he does not roll all the way over. He can sit, but he can not get himself into a sitting position. He can be on his hands and knees, but he can not get himself in that position. So we are going to really start concentrating on those areas. He is getting strong and loves to jump holding on to my fingers. We have just got to learn to teach him the basics.
Last night he was very vocal. So I started making sounds and he would do the same sound. I started saying mamamama and he said dadadada! That was the first time I have heard him say dadada. He finally would do mamama and then we would switch to dadadada. He is also strating to do babababa. Of course this morning for the therapist he would not do any of the sounds!

Monday, September 29, 2008

Poem - Welcome to Holland

I know most parents of special needs children have heard this poem. The first time I read this poem I cried. It is perfect! It makes sense. It makes you finally put the feelings into words! So I wanted to add it to my blog.

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this …..
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.
You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It is all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?!? I signed up for Italy! I am supposed to be in Italy. All my life I have dreamed of going to Italy.”
But there has been a change in the flight plan. They have landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.
So you must go out and buy new guide books, and must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just different place. It is slower-paced than Italy. But after you have been there for a while and you catch your breath you look around …. And you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there.
And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But … if you spend your life mourning the fact that you did not get to Italy, you may never be free to enjoy the very special, the very lovely things …. About Holland!

We are learning wonderful things from Adam!

How is Adam? He is GREAT!

“If they ask about me, just tell them I am cute that’s all they need to know!” I read that on another blog and thought - yes! that is what I need to say!

People are always asking me How is Adam? And I always respond “Great, he is so sweet”. Sometimes what I would like to say is well, he is great, however he is 16 months old, he is not walking, crawling, talking. He does not eat or sleep great. We have OT. He need PT and ST. He has 9 specialist with more to add down the road, but all in all … he is Great! And we are great too and very blessed!” However, people do not want to hear that. I think since they see Adam and he seems like everything is fine, they do not want to hear the real stuff! I think this is the same for everything. Most people when they ask How you are? How are the boys? It is better to say great instead of telling the truth, but with special needs kids it is harder to do. You want people to know how special they are and also why some days I am in a daze because I have hit my max that day! I can only handle so much on some days. Adam takes top billing at our house. But Jake and Matt also have issues to deal with too! A couple of Mondays ago, Adam had not slept but a couple hours so I was exhausted, I had a parent/teacher conference for Jake, Matt was refusing to go to soccer and was really acting out in a middle child way in front of several people one of which told me I needed to throw in the towel on soccer (that went over well) and I still had work to try and concentrate on! Needless to say that by the end of the day I was closed to tears and my brain was full! I could not process another thought, concern or problem. Luckily everyone slept that night and I got a good night sleep and I woke up ready to tackle the world again. And Matt is playing soccer with no problem … glad I did not throw the towel in! J
The one thing I will say God has helped me with in the past 16 months is the strength to take on a new day. If I have a “pity day” I get myself up in the morning and look at the wonderful things in my life and know we will get through it! “We” – as in Craig and I and Jake and Matt and Adam! We are in it together.
So I will go back to saying – How is Adam – “He is great, he is so sweet and we are so blessed. “ The rest we will handle as a family!

Missing my boys

This weekend I had time away from all three boys. I enjoyed my freedom and the quiet around me, however, as much as I am always craving time to myself I always miss them terribly!
My oldest, Jake , went on a church retreat for the weekend. It was his first time away from home for two nights without being with family. He was so anxious about going on Friday I was a little worried he might not make it the whole weekend. But he did! He had so much fun and was so exhausted last night!
My sweet hubby took Adam and Matt to the farm this weekend. they had a great time also. They got to fish and ride the golf cart. I am sure Adam was held the whole time. His grandparents and aunt and uncle were down there too!
I went to the lake with girls Friday and hung out , went to dinner and enjoyed the company with no kids. Between all of us we have 13 kids!
I got home Saturday and spent yesterday cleaning out the boys closets to get ready for fall. I say get ready for fall. It is 90 here today! AGHHH! We were teased last week with cool weather and now it is summer again!
Adam got home last night and was so sweet. He kept looking at me. Everytime I would turn my head to talk to Matt - Adam would lean closer to get me to look at him again. He is eating good and sleeping good right now. We always go through phases. We will have several weeks where things settle down and Adam will sleep and eat and I feel like we can breath. AND then we turn another corner and we go through weeks of no eating , no sleeping and being very fussy and I start getting that fear again .... "Am I going to be able to handle ws and everything involved with it?" I like to think that God gives me little spurts of WS. He gives me a break to get my head back on straight and once I am settled he throws a little more at me. I know this is the best way for me to handle this. Adam has taught me so much in the past 16 months. I have always been pretty selfish and he has made me learn to look at things differently and accept what is around me. I know I have a very blessed life. I have a very loving husband , who is a very doting and helpful father. I have three very special children , who make me smile everyday. We have a wonderful support system of friends and family. So with all of this I know I can handle anything that comes our way. I might have bad days, but I still have to put on my big girl pants and head on! :)

Thursday, September 25, 2008