Today you had your 4th birthday. A few thoughts come to mind. 1. I have kept a person alive for four years! and 2. Where has the time gone? You are still my little sweet pea, though. You call me “Mommy”, tell me you love me and love to kiss, hug and cuddle with me while we watch t.v. together. You are a real Renaissance kind of kid when it comes to television, liking everything from “Blue’s Clues” to “The Backyardigans” to”Batman”.
This year we explained to you that mommy has a “disease” and it is never going to go away, although sometimes it could be better and sometimes it could get worse. We said that is why I need to take naps, use scooters and wheelchairs and why you can’t roughhouse with mommy too much because it can hurt her. I promised that I was not going to die, even though that is a promise that I should not have made to you.
You sleep faithfully every night and nap every day at school with Eeyore. Your favorite toys are Spiderman and Batman and their enemies, and you want to be Batman for Halloween.
You are one of the most kindest, generous and compassionate people I know. You are very smart and I know it to be true because your teachers have taken us aside and said your mind goes places that other kids’ minds your age don’t go to. You love to sing and act out scenes from television and movies, just like Mommy!
We have made it through potty training, though there were at times I really had my doubts! You have made it out of my room and go to sleep in your own bed, although we are still working on you making it through the night there! I know that you are scared to be alone and I understand.
Our biggest challenges are observing your Tourette’s Syndrome wax and wane, wondering if your anxiety will get better or if you will have OCD. I’m frustrated over why you have such a fear of water. It’s still too early to tell, but I promise you, Tyler, that as much as your daddy and I will concentrate on helping you with these things, we will concentrate just as hard on the gifts that you have been given and we will nurture them.
Every so often you say, “Why is my room so beautiful?” or “Why do you make my home so beautiful?” and I wonder when you are going to realize that we are living in an apartment that is too small for us and ask me why we can’t have a house. I wonder when you will realize that we are desperately poor.
Sometimes I get so tired having to put on a happy face and pretend that everything is fine, even though I am not sure what is going to happen to us if our money runs out before your dad and I s’ disability comes in. It can be so exhausting. When I look back at the letter I wrote for your 3rd birthday, I had the exact same worries.
You deserve everything, honey. A nice house, a backyard with a swingset, vacations. Please know that if any child deserves these things it is you. You are so sweet, sensitive and unspoiled.
Things are bad now, baby. The only reason I know that God has not forgotten about me is that he has given me you, you who keep me going despite my illnesses and what they have caused. You are the greatest joy that I will ever know.
Happy Birthday to my angel and my hope.
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