March 31, 2006 8:23 PM
For mothers with medically fragile children
Received this email last week (I've been behind, which you can tell from this wild bunch of posts tonight :)
Barbara,When I came apon your website I couldn't help but notice that we have many things in common. Northern Virginia. George Mason University. Loudon County school districts. And having children with that little something extra on their 21st chromosome. Actually my little guy, Parker, was born with quite a few 'something extras' such as a tethered cord, imperforate anus, chronic lung disease, severely abnormal sleep apnea, the last two of which are the cause of Parker's pulmonary hypertension.
I was wondering if you ever address the needs of moms who face the challanges of large familes blessed with children with critical health issues. We still have the same obstacles......piles of laundry, teaching our children correct principles, mealtimes. etc. But in between these more typical daily duties we add oxygen concentrators, pulse ox monitors, numerous medicines, hospital stays, surgeries, doctors visits, insurance companies and keeping our heads and hearts above water.
We also live each and every day with the lingering thought that we may loose this precious child of ours. It can be overwhleming to try and get it all done.....and still be there for your other children.
And it is a family type that I think deserves to be addressed. To help with this I have started a blog, "Praying For Parker"
You are invited to visit and let us know what you think.
Sincerely,
Tammy and Parker Hodson
Dear Tammy,
I do know some of what you are experiencing as Jonny (14 today! Hooray!) was born not only with Down syndrome but with a blood problen that required a complete blood exchange. Having made it through that immediate crisis, we were promptly presented with the next: a malrotation of the bowel which required him to be medivacced to a higher level hospital to undergo an operation that left him on a ventilator and numerous machines for three weeks.
We took him home from the hospital on Easter, only to return a few weeks later and a few weeks after that. In fact, Jonny's first 14 months of life kept us in and out of the hospital for numerous surgeries - including a colostomy and a later successful reconstruction (yay!). The worst was when he contracted pneumonia (aspiration) two weeks after Maddy was born and was in ICU for three weeks. The doctors prepared us for his death, but he managed to pull through. He came home with an oxygen tank - I hd to smile when I saw your pictures of Parker - that brought back memories!
And btw, what a cute little guy! You all have to rush over to Tammy's site to see this little fella!
Anyway, one final operation and one complete breakdown of his mother before her Heavenly Father (those of you who've read Lord, Please Meet Me in the Laundry Room know which one I mean) and it was all over. He's been fine ever since.
I'm posting your letter here so anyone who's looking for a kindred spirit - or anyone who knows someone who needs one - will know a good place to look. Thanks for sharing!
Posted in Disabilities, Mothering | Permalink
Comments
The internet was a God-send for me in finding like minded moms who are trying to walk the Walk, juggle all the kids and all that medical equipment....I knew this was nuts when my 1st born borrowed the extra IV pole we had to use as her purse rack! Here on the 'net I found freinds who understood, who prayed with me, who offered encouragement and LOTS of ideas.
I thank them all because we would have never gotten this far without them to hold me up.
PS: today was a great day!
http://adventuresinjuggling.blogspot.com/2006_03_01_adventuresinjuggling_archive.html
Posted by: Laura | March 31, 2006 9:29 PM
HI,
I hope all is well with everyone. i found this site thru much needed searching on the net. There are many powerful stories. I am a grandmother to Kaylie born with down syndrome and many many medical conditions. She is 39 months old and she means the world to me. I am her primary caregiver, Mom has to work to keep insurance, and the father and his family dont even bother. Kaylie is still a medically fragile child , she has a feeding tube and tracheostomy to help her breath, Kaylie was born premature and spent more than 3 months in the nicu, part of that time on a ventilator.many times we were told that she would not make it, or ever become anything, that couldnt be more further from the truth if you saw her then and saw her today, she is my miracle baby.I love her more than life itself, and i would give her the world if i could. i would love to talk with and email other parents of children with down snydrome and also other families of medically fragile children. thanks and i hope that i can share our story someday with you all...
Kathy
Posted by: Kathy | May 19, 2007 5:56 PM
