Thursday, April 16, 2009

The Future

Yesterday, I had the priviledge of meeting another CI/CP Mom and her twin 9-year old boys boys. AJ's SLP had given me her information months ago and we have been communicating through phone calls and email ever since.

Having a child with two disabilities (plus other issues) is a whole different ball of wax. There is so much going on at one time. From the moment we brought AJ home and knew there was "an issue", we felt as though we didn't belong. We really didn't fit into the adoption community because we had a child that had issues while everyone else's child was happy, healthy and progressing. We instantly became a special needs family, with a child that had not one, but two disabilities. No one knew what we were talking about or understood what we were going through. I will admit is has been a struggle trying to "fit in" with other D/HOH children/families as well. Again, we have other factors that come into play. There were no support groups for parents like us. We were constantly looking for the right "fit".

And we found it. I walked in the door and two young gentlemen greeted AJ and myself. I must have been rather quiet (which seems to be happening a lot these days) as I felt like she was pulling questions out of me. I was just in awe of her sons. This family have been through everything that we have in one way or another. Her son was implanted at the same age AJ was (odd to say WAS) and received his 2nd implant more recently. He had normal speech, an amazing smile, and quite the sense of humor. The boys wrestled on the floor and I laughed as I saw two brothers doing what typical 9-year-olds brothers do-they pick on each other.

Ironically, this family moved from Muskego to Waukesha to enable their son to attend Lowell Elementary. This mom is the essence of inspiration to me. I laughed when she took AJ out of his "W" sitting position and knocked on the wood floor as he was laying asking, "Do you hear that?" When I told her that AJ's trip to the ER was what broke me, she understood what I meant and reassured me that these days will pass. We are in a stressful, anxious time of AJ's life, where we don't know what to expect or what we should expect. She completely understands why I am not working. Not having to defend or explain myself? Awesome. She always knows what to say and keeps assuring me that once AJ has sound, things will progress and a whole new world will be open for him. From one CI/CP Mom to another, that sounds like heaven.

Seeing her son yesterday helped me to look past the present and think a bit about AJ's future. This is not something we do often, for obvious reasons. It gave me hope. Hope that some day AJ will be wrestling on the floor with his own sibling or friends with target speech and enjoying life to the fullest. Hope that there will come a day where we are not swamped with paperwork or have to think about his disabilities with such intensity. Hope that a sense of normal can be achieved.

I bawled all the way home. This is such an emotional journey that often we don't have time to feel. I better stop driving as that seems to be where/when the tears flow lately. AJ's future is going to be bright. I just know it. The journey there is the hard part.


  1. Hi Heidi - first, you are an amazing, strong mom, and AJ is INCREDIBLY lucky to have you. You didn't "sign up" for the extra special needs that he has, but you are doing such a great job.

    I just recently made contact with a mother locally with a 2-year old with hearing loss. No CI, but at least I now have someone face to face that I can talk to about all the audiological crap. I understand how great it can be to meet someone who gets it!

    I agree that it's important to look past the present and think about the future. That's why reading other older kid blogs is so inspiring to me!

    Take care!!!!

  2. Gosh, Heidi. We really need to meet because I could have written this post. Hang in there, girl.


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