Tuesday, December 28, 2010

Do you want to be healed?

Today, December 29th, our family celebrates my 2nd childs 16th birthday. Allow me to introduce Mary Kathleen Christy. In traditional Catholic times, every family was all but required to name their first born girl after our Virgin Mother Mary. My first name is Kathleen so...walah! Mary Kathleen, Mary Kate for short. It helped that Mary Kate and Ashley Olsen were cute and adorable back then:)  She came out not looking anything like her orange faced brother that was just birthed 12 months earlier. Her eyes were crossed a little more then the normal newborn. Signs began to appear little by little that were abnormal for a baby. I dutifully took her for all of her checkups throughout her first year and found myself saying "no" to the long list of questions asked. "Does your baby...roll over, sit up, grab objects, put hands together, pick up food, put things to her mouth, crawl, etc. etc." "no, no, no, no, no". I was beginning to physically hurt by continuously repeating "no". At the age of 15 months, the words, "mental retardation" passed the lips of the developmental pediatrician. Thank God that my brain can be slower then sap most of the time. I didn't break down until I was in the parking lot and buckled her in the car. From the beginning, she/I broke every rule and expectation a parent makes for her child.  It was most evident when she was sitting up on the living room floor with her hands at her side like they always were. She never moved them. Somehow, she bumped the plastic grocery bag next to her. It made a sound. She liked it! She bumped it again, very slightly, and it made the crackling sound again! Rule #1 was about to break! I took out every plastic bag I could find and surrounded her. I made sure she was surrounded by plastic bags every day, all day. I put them in bed with her even! Parents with special needs kids know exactly what I'm talking about. I can hear them giggling now. The expectations I have for her are vastly different then what I have for my other kids. I will say one thing to Mary Kate and turn and say the exact opposite to another child. There is a great poem written about this. It describes our life perfectly. Do not forget though that we have 7 children from "Italy".

Welcome to Holland

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. 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, 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."

The pain of that will never, ever, go away, because the loss of that dream is a 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.

Written by Emily Perl Kingsley

Now, here is our question. We have a special needs child. Do we WANT a special needs child? If we were given a choice before conception to have a normal child or a child that will forever be mentally retarted (term changed to developmentally delayed a little while later and just this year changed yet again to intellectually delayed...the terms are getting closer to explaining the rest of us. LOL) what would we choose? I ask this question to all of the kids here and there and it causes them to really think. Unanimously, we all would choose to have Mary Kate exactly the way she is. She gives us a foretaste of what the angels must be like. She has qualities that can not be found in another human being. She has a heart of gold. She is simple and kind and does not know a stranger. Convincing her that there are bad people in the world is like convincing you that a beautiful bloomed rose is an ugly weed. So, do we want her to be "healed"? The answer is simple. She already is. We should all be asking ourselves this question. Do YOU want to be healed.

Happy Birthday Mary Kate. I, and the rest of your family, love you beyond words.


  1. Katy,

    This is a beautiful tribute to your daughter. I hope Mary Kathleen (just like my sister!) has a great birthday.

    John VanPelt

  2. Katy ...I too have a DD son...at age 18 he was said to be developed to the age of 9...He is now 32 and a father raising a daughter with my help. I remember when I told my now ex-husband he was in denial.... That may have a lot to do with why he is an ex. I decided that I would not give in and I would give no limits to this child ...let him go as far as he can. Today he drives, cooks, does so many of the things that life requires...I will not be here forever to take care of him, so the more he does for himself the easier it will be for who ever gets the job behind me. I was told that I would have to institutionalize him some day ...I refuse to do that and he doesn't require it ...but it is work...I was upset when my Catholic Parish was going to refuse him his First Communion and Confirmation...I fought once again and I won...He is no matter what Gods Child as God wanted him to be. He is the youngest of my 3 which I raised as a single parent. They are and have been my life for a total of 37 years.

  3. Katy, this is wonderful! Tell Mary Kate I hope she has the best birthday!!! Mine was just yesterday, so we are so close together!

  4. Katy~
    This was touching~ I stand in awe of your patience and care-free attitude and wish I could be more like you! I am what you call one of those up-tight moms! ;D I am working on it though.... in the small scheme of things, it doesn't really matter!

    I wish Mary Kate the best year of her life yet! Happy Birthday Mary Kate!

  5. You guys are blessed. Mary Kate Happy Birthday

  6. Happy Birthday Mary Kate! All of the Hilboldts love you, but especially me. I think it is because(selfishly) you are always so glad to see me. It makes me glad to see you. Katy, I am so glad you started this blog. You are always so quiet that I'm not sure what you are thinking. Now I know.


  7. Good job, Did. You've grown up in the right direction.

    The Dad

  8. Beautifully written and so well said I can't say enough about this post, Katy! It is amazing! Thank you for sharing it! Happy Birthday Mary Kate!!

  9. I need a "like" button for all these wonderful comments. LOL