Sunday, April 24, 2011
It certainly been a long winter! Since January Alyssa has been managing and getting over some difficult respiratory concerns. The last being just a week ago. Thankfully we have the equipment to mimic a lot of what the hospital would do and her doctors provided clear instructions and made themselves available when questions arose. We are now glad to see the breeches of sunlight and feel its' warmth on our backs. Best of all, Alyssa is well and all smiles!
The past few months varying members of our Trisomy 18 community have been dealing with chronic health issues with little resolution, ongoing sickness with viruses, and sadly the loss of several little ones. It's difficult to express the level of respect I have for families that with grace and love prepare to welcome a child they know ahead of time will likely be born "sleeping". I often think boy we had it "easy", Alyssa's diagnosis was a surprise for us ( we did not have certain stresses that a diagnoses in utero may bring on). Simply put the courage and commitment a mother and father (and family/support system) take on, to celebrate the life within the womb through the birthing process, and upon that child's arrival whether his eyes are open or not...is beautiful. I don't want to minimize that very real guttural experience to not see the light of life in your newborns face or seeing a life extinguish shortly after birth. However as a bystander, with a child whose own journey is fragile I am encouraged by their strength. Through their grief they found joy, in their hope love flourished, and because of their grace many have been humbled. These babies regardless of their time here on earth enrich the lives of those who love them and those of us who come to know his or her "story".
As a T18 parent, hearing of several losses in a short time period it is difficult emotionally. Especially if your own child is dealing with a health stress's like frequent hard hitting respiratory issues. This is when it helps to talk with other mothers (fathers, caregivers). Not only is it nice to be uplifted by someone else, but it is very healing to lift someone else's spirits up. The ability to share information, or experiences goes a long way. If you are coming across this blog and know of a family that has a child diagnosed with Trisomy 18; please let them know they are not alone!! We are out here and have a rapidly growing kind-hearted Trisomy 18 community. In fact a Trisomy 18 mom is creating a map to indicate where various families are located; in hopes that support can be found not only on-line but locally too. To get added to this map or if you'd like more information; please contact Jill at firstname.lastname@example.org
On a very upbeat note, yesterday we along with 3 other Trisomy 18 families were able to meet face to face at an event hosted by Variety Club of Philadelphia. This was a day at Sesame Place for families with special needs kids, and we 4 families decided to make the trip. I am still getting my mind around the fact that all our kids were there. When I have permission from all the parents I will post pictures, but the oldest was a cutie-pa-tootie 5 year old girl, followed by our star Alyssa at 32 months, next a sweet girl at 28 months and an adorable 24 moth old boy. Each of our kids were as different as could be as far as health concerns, a milestones but then again there were some commonalities too. It was just great to meet!! We hope to do it again and add to the group as we know there are others out there not to far away.
So that's been our month in a nutshell. Miss Alyssa despite her repeated sickness has kept up her weight!! She is becoming more active with this increased weight, kicking and rolling more. She has picked up a size or so in clothing and had to have her back brace refitted. We are on the track of planning surgery for her scoliosis, that is a blog segment in and of its self . Our hope is that this will be an uneventful spring and summer health wise and full of fun and smiles. I'll post some additional pictures of our day to day; until next time!!