It's been a while since my last post, but the days in between have not been so great and I just didn't feel like updating! Some updates on Kolton's progress- he can now pull himself up to stand!! He crawls right over to the couch and stands up. Such a big boy!! He has really gained confidence and sometimes (when I'm lucky) he greets me in the morning, by standing up in his crib-SO CUTE!!! I remember when he couldn't even sit up on his own and I wondered if/when he would and then he did. Or when he couldn't crawl and I wondered if he would and he did. And then I wondered if he would ever stand and walk and now he is!! I don't know why I ever doubt him!!
Kolton, for the most part, is nonverbal. He has an occassional Ma (and I know it's really Mama), but other than that he just kind of makes noise and somewhat babbles. Shannon and I have tried for the last few months to show him how to sign for a few things. Mostly "more". I wondered if he would ever understand the concept after so many failed attempts. But on Saturday, while we were playing, he grabbed my hands and signed for more!! I don't know why I ever doubt him!!! So it is Tuesday and he is still signing for MORE- more playing, more hugs, and of course more food!! I know that he does fully understand what more means. I so excited about more- than anything else he has accomplished- this a reaasurance to me that he does understand and does want to communicate and is trying to make a connection. YAY for Kolton!!!
Yesterday, Kolton had a visit from a new OT therapist. I HATE this! Shannon can no longer see Kolton, thru the school that provides all his therapy services, so he is being "transfered" to a new therapist. I don't like to be rude or not even give people a chance, but I feel like I have already been thru enough the last few months just trying to survive and now have to go thru another change. I don't want a new therapist, I don't want to explain/describe Kolton's diagnosis and I sure as hell don't want to explain to this new therapist, everything my son can't do. I feel like he is being diagnosed all over again. It's like cutting open a wound that has started to heal.
I just feel like I am in the hating mood!! I hate Fragile X- I hate that it sometimes takes over my life. Sometimes, I wish I didn't even know. I hate that Kolton will be labeled his whole life. I hate that others will not always understand. I hate myself and that I passed this to him. But I know the more I hate, the less Kolton achieves. I know I must move on from these feelings and in time I will. This is all so fresh in my heart and some days are harder than others. I try not to show this side of me, so writing it in a few sentences is the only way I can let it out.
Even though I have all this hate - I have to say I am a little excited that Kolton will be receiving his very own walker!! We will have it custom painted for Kolton- maybe camo!! So I am looking forward to that!!
I always wonder if I am doing enough for Kolton. I read that parents who have special children witness a miracle everyday. In time I know I will heal, and he will continue to grow and accomplish many tasks. I have to remember that nothing lasts forever. Things will always change, and I can/should/want to only look forward to MORE!!
I love u Kolty. U are my miracle and more.
Love u lots,
Ma
Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments forpropagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
