MOSAIC MOMENTS

People often tell me “Yes, we were hoping our child had mosaic Down syndrome, but then it turned out to be Trisomy 21″ I always think, “I bet you were hoping that your child didn’t have a chromosome disorder at all!”

I imagine someone whose child was born without both of their legs. Would the parent say, “I wish my child was born with one leg”? I think they must wish their child was born with both legs.

None of us ever wish our child to have half of something. We, of course, want it all!

I get it. I really do! I know that people have this preconceived notion that people with mosaic Down syndrome(MDS) are “better off” than someone with Trisomy 21 (DS). But, unfortunately, that is all that it is– A preconceived notion.

I do not think you can measure a disability and say “they are better off” or “at least my child has ‘one leg’”

No matter what, the road is still not as easy as you had hoped. Although, as a parent of 5 sons, I know that disabilities have nothing to do with the smoothness of the pavement. No matter what, you will still have bumps, uneven surfaces, and sometimes huge potholes! And, somehow we always manage to continue going down this road no matter how bumpy and winding it becomes. Not because we are extra special parents or specially chosen saints from God, but just because we are parents and we love our children just like any other parent does!

But, is mosaic Down syndrome “better” than Down syndrome? No! Not at all! You can’t measure it. Each individual still has his or her own obsticles and maybe even one more than those with Down syndrome.

What could that be? you ask…
People with mosaic Down syndrome have to face a world where they are not accepted in the Down syndrome community because most don’t look like they have Down syndrome and the community believes they are “better off” and people in the typical community wont accept them because most don’t look like they have Down syndrome but they still don’t act like everyone else.

So…the next time you think “I wish my child had mosaic Down syndrome instead of Down syndrome” Please remember that we are all in Holland together. Our tulips may be different sizes and shapes but they are still the same color as yours.

It is only Wednesday and it feels as though it surly ought to be Friday or maybe even Saturday! The past few days have been so incredibly busy for us at IMDSA that often I feel as though I am running in circles and not really accomplishing anything at all! However, when I look back on Monday and Tuesday, I guess I have accomplished a few things. And, even though Sunday and Monday we stayed up well past 1am, the boys and I have managed to re-establish Garrett’s bedroom!

There is a book called “Men are like Waffles-Women are like Spaghetti” The premise of this book is that the way a man thinks is one compartment at a time. They think of one thing….. no more than one thing….. at a time. And, when your husband is staring off into space and you ask him “What are you thinking?” and he responds “Nothing” This is actually true! (I know ladies… this is hard to imagine!) Men think in small compartments (like waffles) they think of one-thing-at-a-time.

When a man wakes up in the morning, this is what he thinks….

“I need the restroom.”

Which brings us to “Women are like Spaghetti”

Woman are multi-taskers. We constantly are thinking of several things all at once. For most women, when we wake up in the morning, before we even open our eyes, this is what goes through our minds….

I have to get breakfast for the kids then call the doctor to make that appointment clean the kitchen, bathroom, and make the beds, oh yeah! I forgot about that load of laundry in the dryer last night that finished when I finally got to bed after midnight, so I need to fluff that (I love fluff) and be sure to pull it out and put it away I wonder what I am going to make for dinner….oh no…. the baby is awake…. I layed here too long… oh well after I change the baby and make the bottle I can hold the baby and the bottle and then maybe I can make it to the restroom…

(notice that was one long sentence!)

Women think of one thing then immediately that leads into something else and something else and so on….. (like spaghetti)

This isn’t to downgrade men or say that woman are better in any way (or men or better than women either) It is just how we think!

Last week, I gave my husband Glenn a quiz. This was supposed to evaluate memory skills and see at what level you were at and what you needed help with.

One of the questions was:

“You have a load of laundry in the dryer and you are baking a cake in the oven. All the sudden your best friend calls you on the phone. Can you successfully talk on the phone without burning the cake?”

Ladies…. I know you will LOVE this response!!!

Glenn said, “That’s stupid! If I am baking a cake AND doing laundry at the SAME TIME! I will tell the friend there is NO WAY I can talk on the phone!”

So… with all that said, I go back to the story of how we “re-established” Garrett’s room and then you will understand why “Women are like Spaghetti”

Garrett got an Entertainment center from my mom because she changed tvs and her new one wouldn’t fit in this one. So, they brought it over and we cleaned it up. However, in order to get it into Garrett’s room we had to move some things and I decided that it would be much better on the wall opposite of his bed instead of where he tv was before (next to the bed and in front of the window) So, we set up the tv and all his game systems which took away 2 shelving units from the room.

I was on a roll!

So, I decided that we should go through the toys on the other shelves and decide what we really needed. He is 12 now and really doesn’t play with toys. So… we went through each basket and did the…. “do you want this?…this is broken…..Hey! I didn’t know I had that!” In the midst of this, the power went out, and we tried to continue by flashlight. Tim loves flashlights more than anyone I know! So, he held the flashlight and helped us go through everything. Garrett kept praying for the power to come back on. (he would never make it in Amish country!) Finally, hours later, the power came back on. We cleaned and moved and rearranged until finally we called it a night around 1am.

The next night, I decided that we definitely needed to finish this project. (can’t stand things to be half-done!) So we cleaned out the closet, under the bed and continued to move things into the hallway and out of the room!

Garrett’s room is now the ONLY clean room in the house! All of the contents of his room have spilled out into my hallway, living room, kitchen, and back porch. (there are things in the car that still need to be taken to storage too!)

Being that my mind is “like spaghetti” I am thinking…… Tim’s room is Next!!!

So… yes, I am definitely busy with all our conference planning in the day and my manic cleaning in the night! So, just bare with me while I find my house and all my sanity in our organization’s planning and daily work!

If you want to help me out with a little bit of my sanity you could go here and complete our conference survey! This will help us know how many to expect at our conference. If you are not sure about the conference, I explained the conference in my previous blog “It is and It isn’t” and in Research and Awareness Conference.

However, if you more questions you can always ask!