The emotional side of Lainey's hearing loss has been hitting me recently. Maybe it's the pregnancy hormones but over the past few weeks, I have been asked a couple questions that have been incredibly tough to hear. Tough to process. Being completely honest, the questions have made me very emotional and sad.
I feel like I handled Lainey's diagnosis, the cause of her hearing loss, the care and devices needed, appointments, etc. in a fairly quick and positive manner. I have always had a positive approach to life and her diagnosis was no exception. I accepted the diagnosis and dug into learning so I could be the best advocate for her. Lainey has handled her hearing loss in such a seamless manner and is already such a great self-advocate. I am so proud of her!
I guess I thought we were through the "hard stuff". School is a big worry for me but until then, I thought it was going to be smooth sailing, especially since her hearing loss is not progressive (will not worsen over time) and she has no increased risk of any of medical conditions that are sometimes associated with hearing loss. Both her Birth-to-Three teacher and her Audiologist don't see her needing speech pathology work because her speech has progressed so well (that could change, but so encouraging to hear!). All fantastic news! So I thought we were through the thick of it, but I recently have been reminded that Lainey's hearing loss journey will be an ongoing journey. A journey where I will have continuous learning and improvement opportunities. And a journey that will challenge me emotionally from time to time.
At a recent wedding reception, I was asked a very tough question by a relative. The question was "So when will her hearing be fixed?" A short two weeks later, at Bookworm Gardens, an older woman asked me, "Can she hear at all?"
These questions have stung. I appreciate and welcome questions and I do believe there is good intent; however, the rudeness and directness of these questions have left me very emotional. Don't others realize what they are asking? How tough that might be for me to hear? More importantly, how tough that might be for Lainey to hear (especially when she is at a age to understand)?
Since Lainey's diagnosis, I have connected with many new friends on social media. I have built a little community of friends who are adults that are deaf or hard of hearing or other moms who have children with hearing loss. Being able to connect with others who have gone through or are going through something similar has been so invaluable! I have been speaking to them about these recent questions, as well as other friends, and I have been given some wonderful words of encouragement and advice.
The advice that has really stuck with me is to be prepared for other questions I may need to answer. Brainstorm some questions that others may ask - nothing is off the table. A friend recently shared what types of questions she's personally received based on her hearing loss, and I was absolutely appalled that others were asking her these questions! She said these questions are just the tip of the iceberg. If I can be prepared for outrageous questions, I won't be so caught off guard or emotional and then I can truly use the opportunity to educate and advocate on Lainey and hearing loss in general.
Other advice I received was to develop thick skin. Being able to stay calm and not react to the question asked (despite how offensive it is) will allow me to best educate and advocate. It is really great advice, but is something I will really need to work hard at achieving. Thick skin will also help my emotional welling since these questions have definitely been hard on my heart.
Everything happens for a reason. God has a plan. I believe I learned a critical lesson early on and received amazing advice to go along with it. All of this has been super helpful. Being reminded that Lainey's hearing loss is an ongoing journey (and will be so for the rest of her life!) has been super helpful. Lainey's journey is so beautiful and I would not change a thing; however, there will still be hard days and there might always be an emotional side to it. That's okay to admit! I also need to remember the emotional side might be harder for me, than her. That's the way I would rather have it though. I would much rather bare than the pain than her.
Since these past experiences, I have also decided that I am going to start talking with Lainey about these questions. My goal is to continue to help Lainey be resilient, but more so, be there to reassure her the questions she/I/we receive have no bearing on how amazing she is. I plan to tell her it is really exciting that people are asking about her ears! Sometimes people just don't know how to ask about them, and that's okay! We are here to help teach them! I plan to remind her how amazing, strong, and capable is she.
So surely I have recently learned some tough lessons but I am appreciative of learning them early, and I am fueled my the recent advice I have been given. All of this will definitely help me in future opportunities to educate and advocate for Lainey and bring awareness to hearing loss. For that, I am grateful.
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