Monday, August 25, 2008

First Day of School & Some Great News

Well, I did it again. I put my baby on the school bus for the first day of school. The teacher said he did really well. She said he seemed much more attentive to what they were saying and doing with him. He colored a picture of a school bus. And all of this without thowing up! Yippee! This is going to be a great year for him.

Now for the great news. We went to a new Ophthamologist (special eye Dr.) for his annual follow-up. He told me that Stephen's near-sightedness was worse, but that the eyes themselves looked VERY healthy. That is apparently very unusual for kids like him. Way to go Ambrotose!

So now, we have a new prescription for glasses. Maybe if they really improve his vision, he will be more likely to keep them on. Cross our fingers. I am going to be introducing him to sandpaper letters in the hope that they might help him learn to read. The American Printing House for the Blind makes books with very large print for visually impaired people. I am going to see what I can find there as well.

We go to see the Gastrointerologist on Friday.

Tuesday, August 5, 2008

Letting Go

When all of your energy, time and focus are on the care of a loved one, it can take over your life and your very existence. Neglect of friends, family and even yourself are common. Despite the constant drain, you trudge on, praying for rest, but not taking it because no one else can, or would want to carry your burden. Or, so you think.

Your home has become a revolving door of outsiders coming and going almost every day of the week. Physical therapists, occupational therapists, speech therapists, vision teachers, dieticians, and case workers have become your new circle of friends. Everyone grows attatched to the newcomers. Despite the "intrusion", you are still the Queen of the hive, the one everyone relies on. Until..."she" comes.

For so long you have yearned for respite, ached for a nap, and cried out for an uninterrupted shower. This should be a glorious occaision! You finally have someone to take care of the diaper changes, the tube feedings, the crying and the vomiting (yuk). A trip to the store can be made without having to load wheelchairs, feeding pumps, coolers, and diaper bags. The laundry can be washed, the kitchen cleaned, real meals cooked, and floors (dare I say it?) swept AND mopped.

Through the front door has come both invader and savior, usurper and aide. She is... the home health nurse. You marvel at all you are able to accomplish now that so much of your time is freed up, and yet it is hard to let her handle the things you have grown so accustomed to doing. The first few days you just sit and visit. You have to get to know this person who is taking care of your precious bundle. After all, she could be an ax-murderer for all you know. Of course, you swell with pride every time she says, "You've been doing this all by yourself this whole time?"

She proves herself worthy of caring for your child, even though she isn't you. She can even be the doorman for all the the others who come to visit. She plays and interacts with him. It is actually fun to see him from another perspective. What a smile. Over time it is easier to focus on other tasks and the people in your life that have taken a back seat. Ah, what a relief.

Then one day, you start to feel the tug. Suddenly, you realize you are missing all of the little things that filled your time. The stolen kisses on the neck, the belly laughs during tickle time, and the great big squeez'em hugs don't come as often. She is getting them. You become painfully aware that he is transitioning into a new chapter of life. He is becoming less dependant on you.

With typical children, it seems to be much easier. We know that they will grow up and move out on their own someday. We do everything we can to train them to succeed in the big bad world just in case we can't be there to help them. Is it so different with a special needs child? Will I always be there to take care of him? What will he do, where will he go, and how will he deal with it if I am no longer around?

As sad as this time can be, I know it is an important one for us both. He needs to know that there are others in his life who can and will take care of him. I must learn that there is more to life and more to myself than internet research, doctor visits, dietary requirements, theraputic exercise, and GERD (yuk, again). My little boy, who wasn't even supposed to survive, is moving toward a whole new adventure. I am so proud of him.

So, I welcome the ladies who have come into our home and are sharing the precious gift and this amazing journey with us. I am so grateful for the time, love and attention you give to our entire family. May the bountiful blessings we have received flow over into your life as well.