Meanwhile....Back in the airport

So, we are in the throngs of negotiating the waters surrounding the island known as the Preschool Program for Children with Disabilities. The very term makes me wince. I am not sure that I have really come to grips with the term "special needs" or disabilities. I'm thinking the entire thing needs a new name, like "Preschool Program for really adorable children with parent's stuck in an Amsterdam airport." Yes, it's long but makes a lot more sense.

I have spent days doing paperwork. For every question they asked, I attached a separate sheet explaining my answer. For every milestone listed, I checked "delayed." For every health problem listed, I checked "yes."

I attached 5 extra pages of data, not including more pages and a booklet on 7q11.23 duplication, and prayed someone would actually read all the data provided. (Thanks to my Dup Group buddies for helping with that!)

In the midst of doing the paperwork, I have returned to the airport and the aisle of grief. Once again I am mourning. Once again I am struggling with denial, struggling with change, struggling with wanting to have a "normal" life for my child all the while struggling with the need for professional intervention to get him where he needs to be for kindergarten. (The more I hear about kindergarten, the more worried I become.)

I was brought almost to tears one day as we played Legos in the floor for the very first time. We spent two hours building bridges, roads, and stairs for his animals and trains. I was brought to tears by the thought that our spare time was once again being whittled away. You see school won't be in place of therapy two days a week but in addition to therapy. Selfishly, I want a day each week that we can spend together as a family, and selfishly, I want a day each week where Snugglebug and I can crash, relax, and unwind. You do the math. There aren't that many days in the week or hours in the day.

I love our quiet down-times when we sit playing (a.k.a working on OT and speech homework). I have come to grips with so much of this adventure, yet just as I find bit of balance, a new ball is thrown into the mix, and I must find balance juggling even more than before. I can't even really put my emotions into words. I want things to stay the same, yet I want to embrace change. I want to accept once and for all that life for us is going to be full of challenges such as this, but it seems acceptance is outside my reach.

I'm peering at the daffodils outside the airport. I'm glad there are at least windows here, and I seem to have located a payphone to call friends and family for a shoulder to cry on and an ear to listen.

If you are clueless as to what I am referring to, I advise you to read: Amsterdam International.

7q11.23 Duplication: A Mom's View

My sweet Snugglebug has been babbling away and is now starting to say little words like "Hi" and "Bye." It is very quiet, almost a whisper and either before the person is in view or after they have left. It's hard to explain the excitement of a whispered "bye". It is hard to explain anything regarding my child. On the outside, he looks perfectly fine. Many just assume he is quiet or extremely shy. He really isn't either. I just nod and agree because there is no way to explain it.

I'll never forget one day in the grocery store; someone else's kids were running a muck through the store, screaming, yelling, etc. Snugglebug sat quietly in the cart, helping as he always does. A very nice senior lady approached us and said, "I'm glad your child isn't like those others." I just answered simply, "thank you."

But, I digress. Life with a child with a rare genetic syndrome is interesting. Everything you had planned before the baby was born is completely negated. The adventures to the zoo, the friends in mom's groups, the swim lessons, and yes, the Spanish lessons. I'm an ultra-planner and had it all planned out.

Now, we are approaching three-years old and having to consider pre-school, which oddly enough was the original plan. But, there is a difference when you are home everyday and considering two-day a week pre-school. You're ready to get rid of them for a few hours a week. We are already on the road at least two-days a week and turning loose of him for two more is a daunting thought. We have so little time to be mom-and-son on an adventure called childhood. Our childhood adventure has been shortened by two years because of his genetic disorder and the delays that go with it. While he is progressing, he has a long way to go before he is ready for kindergarten.

Another Dup Group (our support group for 7q11.23 duplication) mom said it best when she said that our kids just need more education than the average child. We have to think about schools earlier and have to think about summer schools when they are older.

It is impossible to explain the emotions connected to sending him to pre-school. They are confusing even to me and I'm the one feeling them. I want my little boy to have a great educational experience which means giving him the head start that he needs, but selfishly I want to experience all those mommy-adventures with him and there are so many we haven't had yet.

When I voice my feelings, I am always reminded by the listener that it could be worse. I realize that and don't forget that I am blessed to have a child as healthy as he is, but it does not negate the emotions that I feel.

I cannot express the emotions when he speaks a word; I cannot express the emotions when we have to skip a playdate because of therapy or a doctor's appointment; I cannot express the emotions of sending my child to school at three when he shouldn't be leaving the house till he is five; I cannot express the emotions when I realize that his annual expenses are the equivalent to my sister's three kids all total.

So many emotions from a mom with one child; All of them churned up by the thought of sending him to preschool. We are off to therapy in a few minutes and during those two hours of therapy and the hour and a half round trip to and from, I'll try to squelch the emotions because one cannot function with such emotions. One must push them aside and focus on the moment at hand.

For me two-years, one month, and two weeks seems just like that. It hasn't flown by. To live in the moment is the only way to savor each moment, no matter how few they may be. They don't grow up near as fast as you think they do when you are experiencing every single moment. Yet, it is still never enough.