An article that a new friend shared

I can only hope to live up to this ...


Who Mothers the Children with Disabilities?
By Erma Bombeck

This year, nearly 100,000 women will become mothers of children with disabilities. Did you ever wonder how mothers of children with disabilities are chosen?

Somehow I visualize God hovering over the earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger.

Finally, He passes a name to an angel and smiles, "Give her a child with a disability."

The angel is curious. "Why, this one, God? She's so happy."

"Exactly," smiles God. "Could I give a child with a disability to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes ... here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says "Mommy" for the first time, she will be present at the miracle and know it!"

"When she describes a tree to her blind child, she will see it as few people ever see my creation."

"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of her life because she is doing my work as surely as she is here by my side."

Back to Work

So, I officially survived my first week back at work! Whew! Well, I guess I can't qualify it as my first week back, as I only technically worked two days (but twelve hour shifts, nonetheless)! I had a meeting for four hours that I had to attend on Tuesday, and then I worked 7am to 7pm on Wednesday and again on Friday. To help ease my transition back to work the first week, my mom ("Ci Ci" to those of you who are lucky enough to call her your grandmother) offered to take care of Jack for us for a couple weeks on days that I work. Let me tell you ... there is NO way I would've made it through this past week without her! As if going back to work (and actually having to use my brain power for the first time in three months) wasn't going to be hard enough, I couldn't have imagined having to do so knowing that Jack was in the care of strangers in daycare. Honestly, if he had gone to daycare, I would have been doing my patients a disservice because I would have been thinking about Jack all day (not that I didn't anyways)!

I managed to get through my shift by talking about Jack, answering questions about Jack, showing colleagues pictures of Jack ... and, oh yeah, I took care of a couple people too! (Geez, I hope none of my patients ever read this!) It was nice to know that, despite my fears of having "mommy brain," being a nurse was like riding a bike. And, as nice as it was to find that I've still "got it," I definitely enjoy being a mom more than being a nurse!

For my patients' sake, I hope that it will become easier to concentrate at work and focus on their needs, rather than staring at my baby's photo and calling my mom to check on him every other hour. That being said, going back to work has certainly made those three weekdays I get to spend with Jack all that more precious. And, although I dread leaving Jack and groan when my alarm clock goes off at 5:45am on mornings I work, I know that it is a good thing for my sanity to talk with adults occasionally (and hey, at least I have a job in this economy!)

So, here's to Ci Ci for saving me from heartbreak this last week. Here's to my still having enough brain cells to be a nurse (but I don't think you'd want me as your nurse until I'm a little more "focused"). Here's to the wonderful staff at Moses Cone Hospital's Children's Corner ... if they ever even get to see Jack again. ;) But above all, here's to my adorable, smiling, happy, most precious baby boy who I am so proud to call my son!

Welcome to Holland

For those of you who have never read the following essay by Emily Perl Kingsley about having a child with special needs, I highly recommend checking it out.
www.journeyofhearts.org/kirstimd/holland.htm



Since I had Jack, many people have brought this essay to my attention, but I was first exposed to it four years ago when I was in my pediatrics course in nursing school. We spend nearly a week learning about Down Syndrome, and we watched an inspirational video about children with Downs which included this essay. I remember being so incredibly uplifted and moved by the essay that I immediately called my sister Kelly and said to her, "You know ... I think if I ever had a child with Down Syndrome, I would be okay with it." Kelly reminded me of this conversation when I was in the hospital, just having given birth to Jack. It's amazing how the world works, isn't it? And, thanks, Kelly, for reminding me of my own inner strength ...

When life throws you a curve ball ...

... you eat ice cream!!!

Last night, Jack and I attended our first Moms of Children with Down Syndrome meeting with the DSNGG at Ben and Jerry's. It was really, really nice and comfortable to be around other moms of children with DS. Two other moms brought their babies, too, so it was of course more fun with them there! We got to know each other and shared stories as we passed around babies (Jack was a hit!).

Although our life has been thrown a little curve ball, I feel so fortunate to have these types of resources available even this early on in the game. Several of the moms were very, very open with their feelings and emotions, including the difficulty that sometimes accompanies getting used to the idea of having a child with special needs. It was so nice to have all my feelings validated and to know that I have so many new supportive friends!