Thursday, January 20, 2011

7 years...Shwooo! Happy Birthday S!!

This beautiful little girl is turning SEVEN!!!!
It has been such an amazing seven years, since S came into our lives.  The fact that we even decided to have a second child is noteworthy in and of itself, as my adjustment to parenthood after K's arrival was more than a little rocky.  She was 4.5 years old by the time S came along, so obviously there was a little time in there!  And then, S's actual "birth story" was incredibly exciting - she arrived so quickly we didn't have time to even get to the hospital, and so S was born (with the help of EMTs) in our kitchen...we tried to go out to the ambulance, but S wasn't havin' that.  K, whose room is about 30 ft away from the kitchen, slept through it all!


Her amazing arrival was quickly overshadowed by her condition; she was sent to the NICU for an 11-day stay, because she had difficulty feeding and had extremely low muscle tone.  She was discharged at the end of January, and late in February, after a visit to a genetic specialist, we were told S was born with a rare genetic conditon called Prader-Willi Syndrome.  We had never heard of it...I know I was in shock, crying constantly, and scared to death.  Even though K was over 4 when S was born, I had a really good grasp on what newborn behavior looked like...and S just didn't look like that.  For several weeks, pre-diagnosis, I was trying to accept the fact that she might not make it...so, incredibly frightening.  She was (and is!) a beautiful child, but my husband I were thrown, with absolutely no warning (pregnancy was completely normal), into the completely foreign world of the special-needs parent.  That picture to the left is a picture of the 15th chromosome, and the gene on the far left has an area circled at the top; that's the area affected, causing PWS, in S's case.  Oddly enough, I came upon this paper as I was standing in the kitchen, in almost the exact spot where she was born; I was shredding some very old medical stuff and came across this.  I also found the encounter notes from our first visit to the PWS clinic, and also a copy of the medical bills generated by my stay in the hospital and her days in the NICU....$32,000 altogether...and we met parents whose little ones had been in the NICU for several months...the hospital bills are incredible.

Birthdays, of course, are supposed to consist of only happy thoughts - especially when it comes to one's children.  This time of year....the actual date of S's birth...finding that xeroxed picture of the 15th chromosome, and the encounter notes...brings those days right back.  We survived, S is doing well, I think we are doing okay as parents of a child-w-PWS.  But those days are forever in my brain.  They took my whole world and shook it, really, really hard.  Hopefully I am a better person now, than I was.  Much as I hate the fact that S has to struggle all her life with the complexities of PWS, I wouldn't trade the past years for anything.

So it has been an incredible seven years with this little girl, and she is doing 100% better than we even expected, when we were first adjusting to this complex and challenging syndrome.  She is funny, and smart, and silly, fantastic!  Here's to many more years with both our girls!

Jen

4 comments:

Devin said...

Hi Jen,

Thanks for commenting on my blog! Love when 'lurkers' come out of hiding.

Your daughter is precious, and I loved reading about her birth story and how you came to grips with her prognosis. A couple of parents I know who also deal with special-needs children say they have to 'work' at accepting things each and every day. I am sure it is very hard.

Anyway, thanks again for introducing yourself, I LOVE meeting new friends. Happy birthday to your sweet girl!

An said...

Happy Birthday, S! She is indeed a sweet and truly brilliant girl!

Marcia said...

Found your blog through Hopeful Parents.
What a birth story! May God continue to bless and strengthen your family. S is a doll!

Blessings,
Marcia

Rachy said...

Happy birthday to your beautiful little girl!