You find out your baby is deaf and you put all your energy into researching deafness and cochlear implants. You visit CI centers, make contacts with other parents of deaf children and work towards the goal of simultaneous bilateral cochlear implants. You get through the surgery and before you know it activation day arrives!
You think that everything will be easier now that the surgery is behind you and his ears have sound. He starts by resisting them and fighting you about wearing them. You can't believe how often you have to put them back on, it is more frustration than you have ever experienced. Doesn't he know what these things are doing for him? You attend therapy twice a week and make the sounds of the airplane, the car, the train, the cow, the horse and the sheep and think - will these sounds ever translate into words - when will he talk? Then one or another of your children is sick every day for week after never-ending week. You are fielding calls from the school nurse and sitting in the doctor's office day after day. You have to skip therapy because you have many sick children at home and then you realize you also haven't worked with Ben all day because you have been so busy caring for sick children and you are getting no sleep. You are worried that he will never learn to talk and it will be all your fault. You worry because he isn't progressing the same way as other kids and you are sure that you are doing something wrong or not trying hard enough. You feel guilty that you aren't giving your other kids enough attention. You alternate between scouring other blogs for helpful information, and not looking any more for fear of comparing and coming up short. You are sick of calling the insurance company over the same old claims. You feel guilty because you know that you and your son are blessed to have this technology and that it could all be much worse, but yet you resent having to deal with all the equipment and the stress and just once you wish you could communicate with your child like everyone else. You are exhausted and overwhelmed and you wonder if these dark, winter days will ever end.
Then you go to CI Circle and, with tears of happiness streaming down your face, you read about the older CI kids who are receiving academic scholarships to college and studying foreign languages abroad and playing baseball and soccer and testing above their age for language abilities and attending mainstream schools with no support, except for mappings twice a year and you think, "I can do this! I will do this!" and you thank God for the incredible opportunity to hear about these success stories and you pray for the strength to overcome your doubts and your worries.
And then you drive through a torrential rainstorm in horrible traffic to a therapy session with a therapist you haven't seen since before CI surgery and activation. And she evaluates your son for a four-month post-activation report and she asks you different questions than you had thought about before and you find yourself answering yes, my child consistently turns to the source of sounds and yes, my child always turns when I call his name, and yes, my son runs to the phone, the doorbell, the microwave when they ring, and he will bring his shoe to me when I say where is your shoe and actually he will do this for ball and cup as well, and yes, my son says "aah" for airplane, and "ee-ee-ee" for the beep of a car without prompting, and he does seem to search for me when his dad asks him "where is Mommy" and well, actually, now that you mention it he says "uhh" with his arms raised when he wants to be picked up and he says "oh" for "on" with a perfect round mouth when he wants the water turned on in the sink, or for "open" when he wants something opened. And that therapist tells you that your son has 8-10 receptive words and two expressive words even if he doesn't say them perfectly. And you feel as if your heart will break with happiness and gratitude.
Five months ago, he wouldn't have heard a jet airplane's engine if it was right next to him, and today he can do all of these things. And you think, yes, he has made so much progress right here under my nose - I was just too busy worrying to see the forest for the trees. And you pick up that baby and you hug him and kiss him and say, "What a good job! We are doing this!" And then, he says his first consonant sound right there in the therapist's office, "Mmmm."
On your very long drive home, you notice that the sun is out and the buds on the trees are blooming. Your heart is lighter, the clouds have lifted. So, you put down the window to feel the warm breeze on your face and you know in your heart that everything will be OK. Spring is here.
10 comments:
Kate- you are such a good mom. I am learning so much from you.
What a great post! You made me cry too! Spring is great, huh? Glad to hear Ben is doing so well! Many of those words could have been my own. You're right... it's the little things right now. And receptive language is important too... we just want them to speak in full sentences already, huh? :)
Beautiful...
I have tears just rolling down. Having older kids too, I totally relate to this whole beginning post and it's EXACTLY how I've felt this past couple weeks. It's all SO OVERWHELMING enough with the CIs alone, then you throw in that there's other kids to tend to and love on and be there mommy too (then there's our husbands and the house etc - aHHHH!) Thanks for the hope Kate. I can't wait to meet you and Ben! Spring is beautiful here! I'm loving it!
i couldn't agree with everything you said more! especially the part about balancing children's attention and the horrible drive to hopkins.
traffic was so bad the other day, it got me started off on the wrong foot. then my son was eating his implant...again. what, do you know how expensive that is?!
to top it off he cried (probably teething) the whole way there and back. i couldn't breath (probably stress induced) by the time i got to the toll road.
i too rolled down the window, took a deep breath and realized it is springtime. then he silently fell asleep.
Hi Kate! The progress sometimes comes without us even knowing it, doesn't it? I remember sitting there one day, early on in Henry's therapy after he got his hearing aids, and I was just watching him play. He dropped something and said "oosies." I was floored. He actually picked up some incidental language from me...he said oopsies when he dropped his train! That was something that I had NOT taught him, he just heard me say it.
They are learning even when we don't see it.
I've been there with the guilt. I've felt overwhelmed (and still do some days). I've wondered how I will give all of these children everything they need. Ultimately, I know a new day will dawn, and I'll have another chance. And I'll feel better. I've learned that I go through little tunnels now and then, and they are dark and sad, and overwhelming. But then I emerge into bright sunlight. I'm glad you're seeing the same thing. Good luck! And congrats on all Ben's progress!
You have gorgeous children and you are an amazing mother. I find your blog so inspiring....I am mom to 5 as well and my youngest is about to be activated in 2 weeks. I am so excited!
Thanks you for writing this wonderful blog, we have recently found out that our son has a severe to profound hearing loss, so our journey has just begun, thanks for giving me some hope.
i noticed the same thing yesterday with my deaf son... its like... when, or will he or... whatever
and then all of a sudden you sit back and realize... wait... he turns to sound, he knows his name....etc etc
everything you wrote... i couldn't have said it better, and when i come in contact with other deaf parents i will remind them of this, and i wish i had read your post a month or two ago because i would have realized sooner what I eventually did....
and would have escaped a lot of self deprecating behavior.
Have you communicate with your son With ASL. I think it would be easier on both of you to learn ASL and communicate with him that way. You can sign that these processors help him hear.
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