Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"


By Emily Perl Kingsley, 1987. All rights reserved.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday, September 15, 2013

Good News/Bad News

With the big 3-0 fast approaching, I've been spending considerable time analyzing my 20s. Ten years ago I was living in the dorm, partying....I mean studying, and excited that Patrick and I were finally in the same town. Now, I'm living in a house full of blocks and Mickey Mouse toys, thrilled that I stayed up with our friends until midnight last night, and unsure of what town we're supposed to be living in. Never in a million years would I have guessed that at 30 we would be traveling to a Children's Hospital in Little Rock every three weeks to monitor a little girl who just doesn't want to grow. If you had said life would throw in a three year old with Down Syndrome, a job as a project manager for the non-profit world, and the chaos that only the AF can provide, and I might say you were bat-shit crazy. But, what my 20s taught me is that life IS bat-shit crazy. Whereas a 10 page paper used to stress me out, I consider it a life challenge to see how many ridiculous items we can juggle just for the sake of saying we survived. No, really I just want to curl up with a glass of wine and a trashy book each day, but apparently God thinks I need to make better use of my time:

August 16:  Claire went to Little Rock for her 6 week GI check-up, and we thought it would be smooth sailing because she had been eating like a champ. WRONG!! Although the doc was thrilled with her development, her weight gain was less than stellar. So, the challenge was that she had to gain one whole pound by September 13th or we would be admitted for additional testing/monitoring.



August 23:  Did I ever mention that I have an insane career path? Teacher turned technical writer turned database manager...yeah, makes no sense. At least my current career trajectory finally has some logic. Our national office contacted me to see if I was interested in a new position to run the database for one of our service areas, and I was! The irony of this position is that it is over the VOA Service Coordination program which provides assistance to not only the elderly and low-income populations, but also to adults who can not live independently due to physical or mental handicaps.  Refer to my previous comment that God works in mysterious ways.

August 25: Apparently I have some psychological issues over turning 30. I thought it would be a great idea to go run a half marathon for my birthday just to prove I could. What was I thinking when I picked "The Hottest Half"?? It was appropriately named. In other news, I can finally feel my legs again.

August 25th (Night): Claire woke up screaming. It was an awful flashback to her days before belly meds when she couldn't stop crying and appeared to be in agonizing pain. Not wanting to be the psychotic parent who runs to the  doctor every 5 minutes (we are already there enough), we tried to wait it out. When the screaming didn't stop, we finally went to the doc, and go figure, the poor princess had a UTI! The doctor gave us medicine, and we thought all was better until....

 August 29th:  Claire was still screaming, and my parents were headed to town. We were going on day 4 of holy hell, Luke was getting over pink eye, and I ended up in minor emergency with an ear and sinus infection (Hello, I thought only five year olds got ear infections!). Did I mention Patrick had been in at work at 4 am that week? Godinez breaking point was successfully reached. When Claire screamed so hysterically on the way to school that she started choking on her slobber, I decided enough was enough and we headed straight to the ER after getting off the phone with our doctor because time has told us that nothing with Claire is EVER as simple as it seems. Yeah, until the little turkey calmed down when the doctor finally saw us an hour later! DING DING DING...there was no pattern to the screaming because it happened only when she had to pee. She was holding it, making herself hurt, and then it burned so bad after she went that it was a vicious cycle. No wonder those doctors make so much money!!! Refer back to my previous comment about not wanting to be a neurotic parent.....oops.

By the end of the day, the meds kicked in for all three of us. Luke could see, I could breathe, and Claire could pee....trifecta of medical success, and just in time for Grandpa and Grandma to arrive!!! We had a great visit that included a day at the lake, BBQ, a visit to some plantations, and plain old relaxing. Both kiddos loved being spoiled, and it was especially fun to watch my dad run around with Luke. By the end of the trip, they were best buds.



September 11-13th: I headed to DC for my first meeting for the new job, and Patrick practiced his single dad skills. I must say, he is getting very good at the gig! The only thing to suffer was Claire's hairstyle, but thankfully I had apologized to Claire's teachers before I left. I don't know what it is about wrapping a rubber band in her hair that is so challenging....


Sept. 12-13th: I came home from D.C. at 8 pm on the 11th, and thankfully we weren't delayed because we were back out the door headed to Little Rock for the dreaded appointment. Although Claire had been eating like a little piggy, we knew she hadn't hit her target weight. However, much to our surprise/delight/frustration, the doctor decided not to admit her! Despite missing her target weight by a few ounces, the doctor was happy that she had gained considerably more than at her previous appointment. Now, remember - we have to define "considerably more". We're only talking a few ounces here, people. Apparently in the GI world, this makes all the difference. Although we NEVER want to spend the night in the hospital, the frustrating part about this success is that we are still in the danger zone. Claire is treading dangerously close to needing more testing.  We do not want her to undergo any unnecessary invasive testing; however, the peanut needs to consume calories so she has the strength to develop. Unfortunately, now we're back to appointments in Little Rock every three weeks with the threat of admitting each time.

So, for my last week of my 20s, I'm waiting. Waiting on the results of Claire's genetic testing. These are answers that we desperately want and yet desperately don't want to hear for fear of the long-lasting implications. We're waiting to see if Claire can continue her trajectory of weight gain to avoid another hospital stay. We're waiting to see if the AF can find a way to give us the move that Claire needs Although we can drive to her appointments, 8 hours in the car every three weeks is not sustainable. Plus, add in missing our 8 weekly appointments (yep, still at 8), and we've crossed to a whole new level of ridiculousness.

Tonight, say a little prayer for Claire. Pray that she gains her weight, grows a little stronger, and somehow will stumble into exactly the right doctor's office that can shed light into her mysterious health issues. Say a little prayer, too, that this bat-shit crazy life we live will finally calm down enough for me to enjoy that glass of wine.