Tuesday, October 5, 2010

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.


Tricia a.k.a. 'Mommy' said...

Cynda, Wow... you put into words, in a way I've never found time to do. Our children saying a single word is a triumph and to be celebrated, even if in our own minds. Just this year my little angel said "Monnie" (Mommy)... finally, 4 1/2 years I waited, I cried tears of joy!!!! So, as you already know... there are a few of us who know all to well.

Jennie said...

I love your post. I think we all want to echo your sentiments and say, "Exactly!" I remember once expressing similar thoughts and feeling totally unheard by the people around me. I think others to try to cheer us on by saying, "Oh... my kid does that too." Or, "It could be worse." Or, "They'll catch up."

I know they all mean well, but it isn't the same. Sometimes I feel like Jackson's disability is very invisible. Don't get me wrong. I'm so happy he has the ability to run and play. However, sometimes a communication disorder and ALL that goes with it can be just as binding as that of a more visible and socially acceptable disability. Not that one is better or worse or more right or wrong than another - only that I it would be nice to be heard and understood.

I'm so happy you've joined our support group. What a powerful advocate you are for us and for your son. I'm so glad we were finally able to meet in person.

Good luck with pre-k. I know it is a big step, but I promise it helps. Putting Jackson on a bus when he was 3 was one of the hardest things I did. You will know what is right for you and for your family. That mommy instinct is there for a reason.

Cynda Western Felini said...

Tricia, I understand your emotion in regards to hearing Mama for the first time. I was thrilled to hear Gabriel say Mama a week or two ago only to not hear it again. It is very disappointing.

Jennie, your analysis of this being an invisible disorder is so true. On the outside our kids look healthy, but on the inside they struggle greatly either with speech, anxiety, health problems, or all the above.

Education is the key!!