Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, July 02, 2005


Today someone told me I'm an amazing person.

Who me? I wanted to look behind me to see if they were talking to someone else, but realized I was sitting at my pc reading it in an email, so that was unlikely.

So here I sit, trying to think what they could possibly see that would put me in the "amazing person" category. Analyzing yourself in such a way, (and without your head swelling) is very difficult to do.

The person who complimented me is a peer of mine, a parent of a child with a disability, namely Down Syndrome. What makes us different is that HER baby is brand new, and mine is now 9 years old. That means for the past 9 years I have been dealing with all sorts of things that they never teach you about in childbirth classes, ECFE classes, or anywhere else that I know of. These are things you can only learn by living them.

But I didn't learn alone. My daughter Angela and I have been learning together how to navigate the health care system, social services system, and the county and federal funding system. If Angela had not come into my life, I would know nothing about how to place a feeding tube into my child's stomach, and Angela would not know how it feels to have it placed there. I would not know how it feels to hand my child over to surgeons and walk away without crying, and Angela would not know how it feels to hold a strangers hand, wave goodbye to mommy, and have that stranger place a mask over her face, causing the world to go dark. I would know nothing of acronyms like ECSE, EI, IFSP, IEP, LRE, PT, OT, SLP, GI, PC, DS, CP, GT, O2, or any of the other gazillion or so acronyms I use on a daily basis, and Angela would not know how it feels to have me get upset, worried, excited, elated, defensive, depressed, exhilarated when these acronyms are used. Is it any wonder people are always asking me if I'm an RN or a med student? Is it any wonder people look at Angela and question weather she's really gone through all these things?

I would love to take credit for having developed this "amazing person" all on my own. But I can't, for really I had nothing to do with it. The Lord saw fit to send an angel to my home to change my life. That angel turned 9 this month. (Though I hate to tell ya Lord, but just in case you haven't noticed, her halo is sitting a little crooked and there's these little tiny horn-buds pushing it out of place!)

1 comment:

Belovedlife said...

I can completly relate. I have come to know more about medicine,aned the allied health professions then I care to know from all my kids. There have been many occasions that I have been asked if I am a dr of a much in fact that I have decided to go back to school to get my CRNP. Maybe then people will take me seriously instead of saying "oh you're not inthe medical feild, then I know better" When infact, as I am sure you know, Dr MOm konws their child best.