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| After surgery last week (tubes) |
Our family has entered into a whole new world recently- the world of the {Deaf and Hard of Hearing} (aka DHH). Gracie was just diagnosed with significant hearing loss. For those of you interested in the technical terms, it appears to be a sensorineural hearing loss, meaning that there is damage to her inner ear (cochlea) or to the nerve pathways from the inner ear to the brain. We are not quite sure exactly where the damage is and she may also have something called Auditory Neuropathy (which complicates the diagnosis quite a bit) so we have more testing to do before we can say exactly all that is going on. Gracie has "Moderate Severe" hearing loss, meaning that she misses most speech sounds that are at normal conversation levels. Our hope is that hearing aids will help her but we also plan to learn sign language as a family since hearing aids cannot bring her to 100% hearing. She will be getting her hearing aids (think pink!) this coming week and we are very interested to see how she does with them.
How do I feel? Bewildered...Nervous...Overwhelmed...Remorseful...But also GRATEFUL. Grateful for such a sweet, pleasant, flexible little girl who, we predict, will take the challenges that lie ahead of her in stride. Grateful to have reached this point, to understand what is going on and to be able to move forward from here. Grateful to have joined such a strong community of people (Deaf and Hard of Hearing). Grateful to be in excellent, compassionate, well-trained hands. Grateful to live just up the hill from the school that is the base for the DHH program here in Rochester. Grateful to be married to a resilient man who has helped me to cope with this diagnosis and will help Gracie throughout her life. Grateful for the joy that emanates from Gracie and buoys our family up.
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10 comments:
Wow Jo! So glad for you to have a diagnosis and to be able to step forward in helping Gracie get the help she needs to hear! I'm sure it will be a long road, and just like the name of your blog "sometimes up and sometimes down", but overall an incredible journey!
Yes, "sometimes up & sometimes down" that's all of us right?!? Different day... Different trials. I have so much love & admiration for you. The faith you have, the love, & determination. My son Garrett has had
Stuggles with speech. It is not easy. It's hard. It's frustrating.. Yes, I know all those feelings you ate going through. But, guess what she is the luckiest girl in the world to have a mother like you!!!!!! You are amazing! That is what I love about you! YOU DO HARD THINGS! Love you girl.., if you ever need to talk, you know I'm here! Xoxo
I marvel at life and all of the different things that come to us! You consistently amaze me. The word that hits me the most out of your post is "remorseful". It's the word that shouldn't be in our vocabulary as mothers (except I guess when we are legitimate jerks) but I think we find a way to feel sorry for, responsible for or regret somehow that we didn't do enough, catch it sooner, or that we actually somehow caused something. I hope that feeling goes away soon. And really, I'm probably not summing up how you feel, but how I do about the stuff that happens to my kids. For awhile there, I was blaming myself for Emi's allergies - my theory was that I had radiated her with my iPhone throughout my pregnancy and ruined her immune system! :) She too is my flexible child who has put up with all that has come with that in amazing ways. The man upstairs knows what he is doing!
Oh,Jo! We have been thinking about and praying for you and Gracie. Andrew just read this post and said, "Can I learn sign language too?" Even though we are miles away, we are in this with you.
Jo, I admire you in more ways that you can imagine. Gracie is so blessed to have you and Dave. We too are grateful for the joy that emanates from Gracie. Love, love, love to all of you!!!
What a blessing that Gracie was given to you and your family. Gaby, my almost 9 year old, was diagnosed with unilateral sesorineural hearing loss when she was 5 and in kindergarten. She has 100% hearing loss in her left ear. We had no idea until she had a routine hearing test in kindergarten. How's that for stellar parenting? She had already picked up reading lips as a coping strategy. Hearing aids won't help her at all, but she does use an FM receiver in her good ear at school. It seems to help. Thankfully her "good ear" hears perfectly fine and hasn't changed in the past 3+ years. I can't say I know exactly what you're going through, but I know how I felt when Gaby was first diagnosed and it was all kinds of awful. I'll be thinking of and praying for you, Gracie and the rest of the family. Love you!
Jo, I have been thinking about you like crazy lately. I almost called you and thought about visiting you this weekend because there was a deal on a weekend flight to Minnesota. Oh Gracie really is such a sweet and beautiful child. I can only imagine how overwhelming it all must be but I have visions of you and your family signing because I can't think of more a more capable family. Seriously. And what great things you listed as being grateful for. You're amazing. All of my love to you and your family.
Jo, I love you. Thanks for sharing all you are going through. I am so grateful for all the things you are grateful for, for your sake. How wonderful you are right by that school and that you have found great support. How wonderful. Joy totally does emanate from that little sweetheart and I am seriously just dying missing her. I am very curious to hear about the hearing aids and if it makes a difference. I want to learn sign language too, so keep us posted about the best ways you find for it. You might be tired of questions, but are you able to find out if the damage is to the cochlea or the nerve pathways, or is it simply trial and error with that? (Cochlear implants, etc.)
I do believe God knows what He is doing for sure. That doesn't always make it easier to deal with things though. I know that Gracie is _exactly_ who she is meant to be and that her spirit is so, so beautiful. She chose this very life and will be an incredible blessing to your family, and to all of us. "My PEACE I give unto you, not as the world giveth, give I unto YOU." (from your loving elder brother.)
You are one of the most incredible people that I know. Truly!
LOVE this post! You really do have a GREAT attitude. Gracie is one lucky girl to have you, Dave, and Sam and Sarah. You guys make a great team and I know you will do well in helping Gracie and yourselves deal with this. I love you guys and can't wait to see you in August!
soothers are such a waste of money, daddys c--k while calm them better, my girls all got mine from a few days old
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