Max and I were on a little adventure today at Target. He was using his walker and doing great. (Ok, he ran into A LOT of people and displays...but for the most part, he did wonderfully!)
But then, I notice he is not listening very well and basically keeps walking away...even when I am calling his name quite loudly. (Like the walker doesn't already get us enough attention.) At this point, I am getting pretty frustrated because he is being so stubborn and not listening to me at all. Or so I thought.
Just to make sure, I checked his hearing aide. Sure enough, it wasn't working. I felt horrible. He wasn't being stubborn (or the "terrible twos" as one woman said about him), he simply couldn't hear me.
We immediately went to purchase hearing aide batteries, but unfortunately they didn't work either. The actual aide appears to have a disconnect and will need to be sent back to the manufacturer. I called our speech therapist (yes at 10 am on a Sunday...sorry Kim!) and started crying. I don't know why it hit me so hard today, but right there in the middle of Target...I was painfully reminded about the complete dependency we have on this device. I was reminded that yes, Max has a severe hearing loss and this isn't going away. And actually it will become more evident as he gets older and mobile and expected to talk, react, and communicate.
This lil' boy has my heart...my whole heart...and it saddens me so deeply when I can't make things easier for him.
11 comments:
Your little boy has my heart too. Take one day at a time. Maxwell has accomplished so much due to his (and your) determination. Concentrate on today and when tomorrow comes God will be there to see you through.
Love,
Mary
Max has you in his life and THAT alone will make his journey easier. Your love for him will make things attainable..he has already reached goals that are amazing!
No mother can take away the hurts of childhood..we all wish we could! All we can do is make their lives with us wonderful and joyous, and show them how to navigate the hard bits...
Hugs
Jaye
I am sorry you had a bad day. It sounds like Max was having fun though :-) I completely understand your concerns and I wanted you to know that you are an AMAZING mother and an inspiring woman whom I am proud to call friend. God could not have given Maxwell a better mom!
Love Jennifer
You sound like I did when I thought we would never find Eva's hearing aid again. It was horrible. I hope it gets fixed soon and fast. Hugs Amy and remember we are all humans and we can't fix the world, even tho I know we would both love to.
Hugs,
Crystal and Eva
I think that you are SO amazing, Lady! I tell people all the time, but i don't think i've ever told you...In my whole life I've never seen 2 people more connected or 2 people that love each other more (okay...maybe my parents!) than you and Max.
love you lady!
Sara
In our experience, the grief you are experiencing is yours and not Max's. He has a wonderful life full of magic, joy, affirmation, support and deep abiding love. It seems like it was a moment where a previously undiscovered expectation reared it's head. To realize one cannot call their child's name and be heard is a loss - however it is more specific and circumvetnable than it initially feels. As Keith matures, I have discovered a parallel. Children who are profoundly mistreated by their parents live relatively willing and happy childhoods. It is not until they are older that they start to have the self-awareness that their lives were not normal and begin to seek the wholeness and affirmation they were denied, or grieve the eperiences they lacksed. However as children they simply willingly assume that their experience matches the norm and that their experience of love is complete. Keith is having a parallel process. Becoming aware that his experience was not the norm, Investigating what part CHARGE has in it. Over attributing circumstances and reactions to the diagnosis and his personal physical manifestations before the pendulum swings back and he has a more balanced sense of how his exprience was flavored but not dictated by the condition.
Max is blissfully whole and delighted in your ever constant celebration of him. He is completely surrounded and bordered by your unteilding love, gratitude, optimism and purposefulness.
In circumstances no one would ever wish for, you have made Max's life perfect. Full of love, celebration and conintual companionship of a deep spiritual nature - always meeting him where he is in the process or procedure.... Max is whole and you have embodied everything there is to be done. You have celebrated fully the individualtion of perfection which is Max and have mirrored for him his perfection and modeled for him the tools to honor his wholeness and capacity.
oxo,
y
Oh Amy, My heart is breaking for you right now. I am so far away but I hope you can feel my support. I should say...alllllll of OUR support who blog with you. This is the low part on the rollercoaster ride you mentioned. Tomorrow will be better....it always is. Give Max a hug too.
Love,
Shannon
Max and Amy, you both have my heart. Max has an Incredible Mommy and he has reached so many goals because of you. Take one day at a time.
Love,
Carolyn in WV
wow how fustrating
You know its usually when the parent is most frustrated that the kids are having the most fun (Max crashing into people and displays- cruising all around :) ) Sounds like a typical little boy to me!
Hang in there-
Ruthie
I truly feel your pain on this. I'm with you. I wish I knew the answers now...Cx
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