CdLS Family Gathering June ’09

We had a gathering of local CdLS families this past weekend.   We had about 13 families here and it was a lot of fun.  It’s always great when we have an opportunity to get together, share stories and laugh (or cry) about our crazy lives.  Looking back at the pictures from the day I realized that other than my immediate family, there wasn’t a single person here who I would have known were it not for Andrew.   From the other parents to the kids themselves, the siblings, and Andrew’s teachers, therapists, and even doctors…they hold a very special place in my heart and I’m so glad I’ve gotten to know them.

It reminds me again that having a child with special needs and challenges really is a blessing in so many ways.  I sometimes wonder what it would have been like for all of my kids to be “normal”.  But, I wouldn’t trade him, the experiences, or my new extended family for anything.   

Can you fee the love?

“Little Boy Blue”

25 Random Things About My Child with CdLS

1. 

   He will NOT wear a hat anymore. Bummer cause he looks so cute in them.

   Andrew is 7 1/2 years old.

2. He was diagnosed with Cornelia de Lange Syndrome within days of his birth
3. He was 4 lbs, 15 oz when he was born and he was not breathing and had a very low heart rate.
4. He spent 2 weeks in the NICU.
5. He is tube fed. While he loves to taste things, especially strong flavors like doritoes, garlic, lime nachos, etc, he hasn’t mastered the art of chewing, breathing, and swallowing all at the same time.
6. He has no speech and communicates mostly with sign language these days.
7. He LOVES to learn new things and surprisingly has a great attention span (when it’s something he’s interested in.)
8. He LOVES loud noises. The louder the better. (Just found out the volume on our TV can go up to over 90!!)
9. When Andrew was diagnosed, we prayed more for his happiness than anything else. Our prayers have been answered tenfold. He is such a happy boy most of the time. Almost always up for a good laugh.
10. He enjoys teasing and has a very good sense of humor.
11. He loves zippers. When friends come over he always has to zip or unzip their coats. (Thank God he hasn’t attempted the zippers on pants yet! That could be a little embarrassing.)
12. Andrew’s favorite things are his bumble ball which he carries around in his mouth, musical and light up toys, a large therapy ball which he’s been chasing around since he was about 2 years old, electric toothbrushes, and did I mention loud noises??
13. He goes to a private school where they focus on verbal behavior. He loves school and the woman who works with him the majority of the time. I don’t think there’s another person in the world (besides his dad of course) who I trust with him more than her. (Thanks Maryann!)
14. Andrew really loves his bed and has always been a good sleeper (knock on wood). He sleeps with his face buried in the corner and his pillow over his head. I don’t know how he breaths in there! And NO blankets please!
15. Andrew used a pacifier till about a year ago. Mostly just to chew on because he’s very oral. When we took it away he became obsessed with holding onto socks. Now, wherever he goes he will almost always be carrying a pair of socks. If you take the socks out of his hands it’s like unplugging him. He just shuts down. Bizarre.
16. Andrew is still very small. Even though he is 7 1/2 years old, he is still only wearing a size 4 and weighs just over 30 lbs.
17. He has had several surgeries…nissen fundoplication and g-tube placed at ❤ mos old, eye surgery to correct ptosis (droppy eyelids), inguinal hernia repair, ear tubes, tear duct, etc, etc. Lots of time in the hospital.
18. The winter seasons are usually difficult for Andrew. He seems to pick up every stomach bug that is out there. However, this year has been different. He’s been really good compared to past years. Maybe the new school, maybe his immune system is catching up, maybe something else. Whatever it is, it’s good to see him feeling so good and so happy this year
19. Andrew really enjoys playing with is brother Joe. But he often plays inappropriately by hitting and kicking. Joe loves it, which I don’t understand. It’s cute to watch them interacting. They often play hide and seek as well.
20. All kids are blessings. But kids with special needs have a little something extra. Maybe it has something to do with their eternal innocence. Whatever it is, Andrew has it and him being here has made the world a better place.
21. Did I mention Andrew likes loud noises?
22. He loves to take a bath (I think) and asks for one all the time. But, when you get him in the tub he yells and screams through the whole thing. Sometimes for fun, sometimes because he’s stressed out. Especially when you wash his hair. You might think he’s being attacked if you hear him in there.
23. Andrew is a big fan of music and will sit on his dad’s lap to listen to music on the computer or silly songs on you tube for long periods of time.
24. Because Andrew doesn’t speak and doesn’t eat I think people underestimate him. They don’t realize how much he understands, what he is capable of and how smart he really is.
25. While Andrew is a lot of work and taking care of him can be all comsuming at times, I wouldn’t trade him for the world. There is nothing better than is smile and laughter and nothing worse than when he is in pain. How we were so fortunate to end up with this little angel is beyond me. He definitely ranks among the top three of my favorite kids. (I only have 3 by the way) 🙂

What a great day today

So, the weather was really warm today.  Just a few days ago we were buried in snow and it was freezing cold.  Today was almost like spring.  We took a walk hoping to wear the kids out a bit, but as you can see, they hitched a ride with dad.  Joe and Paul had a little batting practice when we got back.  Andrew did laps around the car, one of his favorite things to do while dragging his hands along the car and getting absolutely filthy!  Then he tried his new tricycle.  Still working on the pedaling, but he likes riding while pushing it around with his feet. 

By the way, those are socks Andrew’s holding onto.  He’s obsessed with holding socks.  It started after we took the bink away.  If you take the socks out of his hands he shuts down completely.  You put the socks back in his hands it’s like plugging him in and he’s off again.  Bizarre, I know.  He has started putting them down a little lately.  But he always knows where they are and always goes back for them.  It’s a start though. 

Anyway, it was a really nice time outside.  Unfortunately, I wasted a good part of the rest of my day on facebook.  I was looking at everyone’s pictures and got carried away.  It was fun, but I’m feeling a little lame about how much time I spent on the computer today.  I need to get a life I think.

Angel of God (a poem)

I know what you are thinking.

You want a miracle.

What better one could I give

than to make this little one whole and new?

I could do it, but I will not.

I am the Lord and not a conjuror.

I gave this child a gift

that I denied to all of you…

~ Eternal Innocence ~

To you he looks imperfect,

but to Me he is flawless.

He will never offend me

as all of you have done.

He will never pervert the work

of My Father’s hands.

He is necessary to you.

He will evoke the kindness that will prompt you

to gratitude for your own good fortune.

He will remind you every day that I am who I am,

and that my ways are not yours.

I have chosen you.

This little one is my gift to you.

Treasure him.

~author unknown~

Oh my goodness!!

"the little darling"

I just checked my calendar.  That’s where I put all of the stickers from the g-tube box that has the serial numbers on it.  I also note each day that I have to change his tube.  SIX g-tubes in the month of July!!!  Yes, SIX!!  That’s insane!  And that’s with all of the measures in place that we could come up with to keep him from pulling them out…overalls during the day, onesies and shirts pinned to shorts at night.  During the day has been pretty good.  But night times are a pain in the neck now!  I can’t put him to bed in overalls.  Not with all of the metal buttons and buckles.  That would be very uncomfortable I would think.  The onesies are useless.  He pulls the tube out anyway, but at least it doesn’t get lost.  And he can’t very well chew on it when it’s stuck inside his clothes, right?!  UGH!!!  All suggestions welcome!  There’s got to be something!