Friday, July 07, 2006

JACK RYAN CLARK
my boy is 3 months old today!!!! i can hardly believe it. i could sit and stare at his sweet face for days on end, peaceful and fulfilled. my heart is filled with joy with every breath he takes. he is a precious gift that i will never take for granted.

my darling jack ryan was born with something extra special...that third 21st chromosome which is also known as Down Syndrome. i have to be honest...i never had one ounce of information on this condition and when we were given the news that OUR son had DS, my heart sank...for no other reason than the "unknown," that dark abyss of "what nexts," "what ifs, " and "is he going to be allright?" my mind focused on his future...will he ever get married? will he have kids? will he ever live on his own? can he go to college? how delayed will he be? how will he be treated? what type of school will he go to? can he learn to read? will he be healthy? aaaaaaaahhhhhhhhhhhhhh!

tisk tisk! how silly...because no one can predict the future...even with our "typical" children. i don't know for certain how bella or keeley's life will turn out. all i can do is teach them, nurture them, provide a consistent strong family model, expose them to many experiences, LOVE them and have expectations that they will thrive...then let them go on to live the life they choose knowing that i (and john of course!..don't mean to leave him out!) set the foundation for them. well duuuuuhhhhhhhh!!!!!! it's the same with jack. he's our sweet little jack and he will have the same opportunities our daughters will have..he'll just go at his pace. he's a unique special little boy that has his own purpose in life, just like the girls. i look back now on how emotional i was about his future and i laugh...i haven't cried one tear over jack's DS since two days after we found out because i woke up on that second day and went, "OMG!!!! I LOVE this kid! He will enrich our lives in more ways than I can imagine! So get your sorry self up and go on with your life!!!!!!!!!!!" and that's what we've been doing ever since...

so as for mr. braveheart...that little extra chromosome did a number on his heart...the DS i can handle, but the heart defect...now that's another story! jack has what is called an AVSD, which means that the center of his heart, in between the left and right chambers, formed incorrectly. basically, the top and bottom walls and the opening to the left and right valves are all screwed up...so ALL four walls! unfortunately, that means jack will need to have open heart surgery to fix the top and bottom walls and rebuild the valves (a bit trickier). we went in for a check up on monday and the cardiologist was happy that jack had gained almost 2 pounds! WOO HOO! he's 10 lbs. 9 ozs. he did put jack on lasix because his liver was a little enlarged and the lasix is a diuretic that will get the extra fluid off his lungs...and let me tell ya, IT WORKED! his first diaper soaked all the way through while he took a nap and the diaper felt like it weighed a pound! anyways, the cardiologist also told us the surgery will most likely be when jack is 6 months old, so october...it will either be done at CHOC or CHLA...at his next appointment in august, we'll talk to the doc about our options. other than that, jack is doing fabulously. he smiles, coos, rolls over from his tummy, responds to my voice and tracks a toy from left to right. his physical therapist thinks he's doing a great job! Go baby go!!!!!!

5 comments:

jasmine said...

I think you are a wonderfully strong and loving mother! The kids are lucky to have you as a mom!

Ms. Webster said...

Your strength needs to be shared with other people in the same situation. Maybe they will benefit from your blogs!

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