Tonight (this morning...whatever time it is) I spent time searching on the web for Holoprosencephaly. It's been quite awhile since I've looked on the web for other parents, families that are dealing with this same condition, as well as any new information regarding this diagnosis. I had to stop looking, it can be an obsession if you let it, and spending time with my daughter has sort of taken precedence. Sometimes its good to just step away from the diagnosis and just enjoy the person. However, tonight, I was inspired, alarmed and touched at the other blogs I found (which you can check out here on my page, to the right of my posts). So many parents that received the same heart-wrenching news about their children and so many strong and positive stories about how they are dealing with pregnancy, delivery, saying hello and saying good-bye. In so many ways I feel so lucky to be in Our situation. I try to make our life as normal, as normal can be, sometimes it back fires on me. When Eva has a bad day or week, I guess I am again reminded of how not "normal" our situation is and how taxing it can be. Nonetheless, I try to keep the normality in our home as best as possible. Eva is approaching 5 months. Can you believe it? Before she was born, I spent time not setting up her nursery or having baby showers but planning her funeral. I had to stop, I just couldn't. I just didn't feel like that was what I needed to do. I was scared and nervous on the day she was born, but I knew with all of my heart that I would meet my baby girl and all that funeral planning needed to take a backseat. I still have "the planning" in the back of my mind. The planning to say good-bye and all the other details that go into it. I sincerely do not believe that her time is near, I may be naive but I know Eva will let me know when.
For now, she's eating, she's growing (not at the same rate as baby's her age) and we are living with our situation. She continues to have seizures on a daily, hourly basis. But Eva is strong and she is doing well with the hand dealt to her. I am so proud of her. She does not complain, she preserviers. Only she knows how much she can handle, we just comfort and love her through it.
I have to say, in reading about so many parents that have children with special needs I am amazed at how they perservier! They do not put limitations on their children, they give them opportunity and in return these little ones thrive, at times they don't even know they have limits. These are very special parents and very special children, truly inspirational!
I read this poem on someone else's blog and googled it, I have posted it here to share with all of you! It is a beautiful poem that I hope all of you will share with parents that you know care for a special needs child. Thank you all for your constant love and support, thank you for your thoughts and prayers! Although, we are far away from "home" please know that Jose, Eva, Jeter and I know how very NOT alone we are. Because of our church members, friends, neighbors etc...we are trying to lead the most "normal" life we can. And I am so grateful for all of you that aid us in accomplishing this difficult task.
HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth,
It was time again for another birth.
Said the angels to the Lord above-
"this special child will need much love.
Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care,
From the folks she meets down there.
She may not run or laugh or play,
Her thoughts may seem quite far away.
So many times she will be labeled,
different, helpless, and disabled.
So, let's be careful where she's sent.
We want her life to be content.
Please, Lord, find the parents who,
Will do a special job for you.
They will not realize right away,
The leading role they are asked to play.
But with this child sent from above,
Comes stronger faith, and richer love.
And soon they'll know the privilege given,
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD."
by Edna Massionilla
Dec, 1981
The Optomist - newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.
