Thursday, July 21, 2005

Happy Birthday, Emma or Mr. Maudlin rides again

I'm copying this post today from my favorite Down Syndrome Parent's Forum:
As far as I can tell, below is my first post on Downsyn, in July, 2000.
There is not a lot more that I can add to the tremendous amount of wisdom already posted in these preceding messages. Only to add that it seems to me that you are doing the right things - first, seeking the best for your child's health. Second, you are taking the courageous step of seeking information and help for what you are feeling. My advice to you is to read and re-read these messages for the faith, hope, comfort and courage that you will find in and around the words written. Faith and trust start with you.My daughter will be one year old this week. We did not know that she had DS until her birth. I have turned over and over in my mind what it would have been like to have had months to think about her with DS before she was actually present, and I honestly can't say if it would have been better or not. In the first hours and days of her life, I actually wished that her medical problems would take her life, and that we could be the brave parents experiencing a terrible loss, and then move on. The reality is that we lost the daughter that we wanted - she never existed. Yesterday, I arrived home from work to find Emma asleep in her crib. She slept through our dinner until nearly 8 o'clock. I was angry because I didn't get to spend hardly any time with her. In the midst of all of the things that worry, frighten, annoy, and grieve me, the best part of my life is when I get to hold and play with both of my kids. Emma's smile can melt the coldest steel. Sitting in my chair with her asleep on my chest brings me the greatest sense of peace and contentment that I have ever known. This message is getting long -- I am having to develop attributes that I never wanted to have - but I am a better person as a result.I have to address life quality issues at every turn - but I have become a source of strength and courage for others.My heart is broken - but it is through this that I am learning what really matters.Life is a gift - Love takes courage - God will bless your efforts if you trust him to.That's enough for me for one day.
Today is Emma’s sixth birthday. A lot has changed, and yet nothing has changed at all. Some things are not as clear to me as they seemed then, to be honest, seeing my own words prompts me to seek some of the strength I’ve been denying myself due to self-pity, lately.
My children are still my greatest source of strength. Emma was in asleep my lap, last night, and I just waited a little while before carrying her to bed (no small task, these days). She’s not so innocent, anymore; she’s a formidable presence in this world. We’re all struggling with getting her to new levels of communication and behavior; our (hers and ours) hardest work right now is to try, not to revert to what’s worked in the past. I am so proud of my son, Samuel. His compassion, watchfulness, and patience with all of us – I try desperately to not take for granted.
There are no adequate words for me to express my admiration for Vicky. She bears the brunt of the daily grind, the chasing, the doctors, the medicine, the bills, the angry guy that comes home every afternoon, the laundry, and the myriad of other things that don’t immediately come to mind. She’s an amazing Mom. She doesn’t let up. I don’t know how she does it.
So, the party’s on Saturday, there’ll be pictures, maybe an annual cake-video.
It’s appropriate that my first post began by acknowledging others here, some have gone on, some remain. I want to end this one the same way. You folks inspire, challenge, and make this world a better place, day by day, diaper by diaper, sign by sign. Some of you now move entire communities, having never thought yourselves capable of such things. One of the things I realized, that Dan Rather got booed for, and we just don’t talk about enough, is the need for courage. I find courage here, every day.
Thank you.