I am not going to Lie, learning Marae was deaf was one of the hardest days of my life. I can only relate it to the day I lost my mom to cancer. Yes, I still had my sweet baby girl to kiss and cuddle, but I felt such a loss... grieving what I knew to be "normal" for her and feeling so uncertain of what lay ahead. Luke and I NEVER in our wildest dreams would have pictured ourselves here, but we are and we have learned that hearing loss can happen to anyone.
I have had about 5 weeks to digest her diagnoses. Some days are better than others. Most days I feel at peace about it but then there are those days I struggle. I no longer fear that Marae will never hear my voice or hear me say "I love you". I know she WILL and I am so thankful for modern technology and medicine. I am so thankful for Cochlear implants and that she has the opportunity to hear and experience the amazing world of sound and speech. I dont worry that her deafness will hold her back from achieving whatever she desires. I know that she CAN do and be anything she wants. She could even be a singer if she wanted. ( hint hint) ;) All thanks to implants. Having said that, I do worry about how people will treat her once she leaves my protecting arms. As parents we always worry about how our kids are being treated regardless if they have a limitation or not. Even after the implants Marae will always have an earpiece if she wants to be connected to the world of hearing. Though she is a girl and her hair will often hide it, there will be times it doesnt and people will notice and because of it they may treat her differently, like she is somehow broken. I have already gotten this response from some people who have learned she is deaf, even family. Let me be clear, she is NOT broken. Just as many people have to wear glasses to see, some have to wear aids in their ears to hear. Why they are perceived so different, I will never know.
What I do know is that Marae is beautiful. She is sweet and patient. Alert and so interested in the world around her. She is so smart. She already knows how to grab at her ears to remove her hearing aids. Though I appreciate her inteligence, I sure wish she would stop removing them! :) She is a snuggler and a smiler and I am so thankful I get to be her mommy. This is a hard adventure but one I will appreciate. I am so thankful that hearing loss was all I was given. I am glad I do not have to watch my daughter struggle with a degenerative disease or an illness that threatens her life and causes her physical pain. I am glad she is healthy and I am so thankful she is ours. I look forward to life with Marae. Appreciating the simple things and watching her discover all that she can be. One thing she will always know is how much her God loves her and her family adores her.
Prayer Requests:
Prayer for the Implant application Process
for the many decisions that lye ahead including early intervention programs
patience with the hearing aids and perseverance in keeping them on her.
Patience with Kay and Noah as they learn new boundaries we have set between them and Marae's ears
Katie, I am encouraged to read this and see how God is working in your family and working on your Trust in Him. My aunt and uncle are deaf, and in the past I have taken some ASL classes though my ASL is weak and rusty (West Seattle Community College offers some). One thing you will learn as Marae grows is that that deaf culture is distinct in some interesting ways, and they embrace those distinctions and their own cultural differences. Even with her implant, I would suggest you look into learning ASL and raising Marae with it as well. I figure you've already been told that many folks wrongly think that because their child is deaf, their child is also mute; but that is not necessarily true...the child may grow up bilingual with ASL and their parents' language. We will keep you all in prayer and know that God is blessing you out of His Goodness. -Rich Fry
ReplyDeleteLove you Rust family and I especially enjoyed meeting Marae yesterday! What a joy!
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