I just realized that my Isabella stopped playing with sounds… she does not coo, or babble as much as she did. I realized that she hardly really babbled or cooed. She would however make sounds that seem like she is calling for us. But that was mostly it.
A lot of children with WHS are nonverbal…. So if my Isabella will grow up non verbal, it should not really surprise me. However, when I spoke to a friend of mine who is a speech pathologist regarding this babbling issues I have been having, she adamantly had to confirm my strong suspicions that my daughter would most likely fall into the non verbal category of WHS children. And as much as I knew about this possibility, I felt a pinch in my heart.
So, this weekend I found myself in a place where I was praying fervently…. In that moment of sincere and deep prayer, I was bargaining with God. I was trying to cut him a deal to perform a miracle and make the “speech happen”. Then I started crying.
I cried not because of pain…. I cried because for the first time, I understand the meaning and depth of the word “desperation”. I was in a very desperate place. I came to understand that “desperation” can so easily be mistaken for hope, however the underlying emotion between hope and desperation are entirely different emotions.
Forlorn hope aka desperation is losing focus of the good promises that lie in the future…. Positive hope is keeping things in perspective and having a happy and contented disposition… it is more than just optimism, it is believing, it is having faith, it is taking in that unknown future with a trust that is enveloped with spiritual grace.
I then stopped my bargaining process with the Lord. I came to realize that there is no need to bargain for anything. I get what I get and I should be content.
Why pray for a miracle?
My daughter is not sick.
A trade or bargain will not change things.
I don’t think that it could ever be possible to wake up one day and find my Isabella “normal”.
Nothing is wrong with having a daughter like mine.
Nothing is wrong with Isabella.
She is fine and she is happy and she will be who she is going to be and she will be okay.
Everything will be okay.
Why pray for a miracle?
Have I not completely accepted her?
I should by now.
I should have, by now, accepted my lot wholeheartedly.
Next time I find myself in a place of desperation… the miracle I would be praying for is for my complete conversion to acceptance.
I so desperately need that kind of miracle in times that I lose sight of positive hope.
5 comments:
To give you a little reassurance, Riley goes through stages like this. She will coo and babble up a storm for weeks, then be completely silent for a few weeks. During those weeks, it is like she is figuring out something new and when she "talks" again, she has come up with a new sound or phase. She started cooing at 4 months and still goes through these phases now at 19 months. Keep praying, I think this may be a phase.
I remember that feeling too well. Sometimes I too question myself if I've accepted my child the way she is. I guess acceptance comes in stages.
In this particular case though, I think you should be faithful. Those kids are fighters. My little girl did not start babbling until she was over 1 year old. She did make some sounds, but not much. At one point she stopped making sounds completely. Nothing, just silence. It made me nervous and I remember sharing my concern with our speech therapist. She said that many (including many typical developing kids) do that when their brains are busy figuring some other skill out - ANY motor skill will take priority over the speech. Sure enough, couple days, or maybe a week later Denise started creeping, and then the sounds came back.
I think you should keep believing in your child. In your beautiful, strong and sweet child.
Hugs and love.
I don't know what to say. This is poignant and difficult, and I relate to so much of what you wrote. But I don't know that you "should have" accepted your lot wholeheartedly by now. It hasn't really been that long, and the process is different for everyone. Take your time.
On my darkest days...I think of two words that you taught me. Healthy and happy. So my sweet friend, I will tell you Isabella is healthy and happy.
For what it's worth, and I know not much because I often hate people trying to be overly optimistic when they don't *know* my kid like I do, and all her intricacies, let me just say this...Mona didn't make sound at all, besides little grunts while pooping, until she was 2 years old. And she didn't babble until after 3, and even then it was not typical babbling. She is severely speech delayed now but she constantly talks! She speaks in small sentences but is very hard to understand, and now she does do proper babbling often. She will be what her SLP calls "a functional communicator" and at 1, 18mos and 2 years old I had SLP's telling me speech was not possible for her. She was just SO delayed in that area they didn't think it would happen. Currently we're waiting on a communication device to help with sentence building and communicating with those that can't understand her.
There isn't really a point with these kids when you can say "they haven't done it yet so they never will". Some walk without assistance for the first time in their teenage years. I don't want to give you any false hope, just let you know that Ramona and others have had the same prognosis and come through it.
Hugs.
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