Today I went through some of my old blog entries from a few years ago. I must say it's now a little difficult to read my blog entries from before Abby's (and Carter's) official HL diagnosis, because I seemed so happy and niave. It's bitter-sweet to enjoy the pictures and memories and growth of my babies, but the "now" me is saying, oh, just wait and see. Your life is going to be turned upside down. And then I read this post and every emotion came flooding back to me. I will never forget that day.
And in a few weeks, we might possibly have to go through that again. We know the odds are pretty good that he could have Pendred Syndrome. We are going to be okay and at peace with whatever the outcome is going to be. But it doesn't matter how much we've prepared ourselves for the red "referred" slip to come back after his HL newborn screen. If it happens, those emotions are going to come flooding back again: the worry, doubt, sadness, and acceptance that our child is going to struggle with this for the rest of his life.
And in a way, I feel like some of the joy of having a baby has been stripped away from me. Everyone expects a healthy, beautiful newborn because they have no reason to think otherwise. But for us, we can't just enjoy the moment, because we know it's possible that our child won't be "normal."
This kid's going to be okay if he has hearing loss. He is being born into a family and a community that understands it and knows what to do. The resources at our disposal are phenominal and we will give him the best care possible. And we will love him no less and maybe even more because of his special needs. But as every parent that has a child with a disability knows, it still doesn't change that moment when you first know . No matter your past experience, it is still terrifying.
6 comments:
No advice, just support.
Thinking of you!
Big hugs, you are an awesome Mom, with beautiful kids.
Your children are amazing Mandie! They have such sweet spirits and such a purpose to their life here. There is no "normal!" Everyone has something wrong with them, or some trial they must face here, but each one of us is important and loved in our Heavenly Father's eyes, and of course the eyes of our parents. That is why we have the ones we do. You keep on loving your beautiful babies! They were your gift because Heavenly Father knew you would help mold them to be the best they could be, and no less! They are lucky to have you and Brian, and you them! Do not look at it any other way! Your family is incredible and such an amazing example of love and devotion to the rest of us! Cuddle that baby and enjoy every moment!!! It passes too fast to dwell on what could be. We love you guys! Best of wishes and blessings!
I agree with Raechal, no "normal" babies. EVERY kid will have their difficulties. Yours may have hearing loss, but others will have drugs. Mine may have heart problems, but others may hate their parents and rebel. You might feel the sadness, but though the silver lining may be small - it is there. You and your children are so blessed to have each other. Cleave to each other and all will be well. Love you guys!
Es gibt offensichtlich eine Menge zu wissen. Ich glaube, Sie haben einige gute Punkte in Funktionen auch. Halten Sie Ihren Arbeitsbereich, great job!
This post is so tender it rips me apart. I will pray for you and for your family to continue to have understanding in your hearts and minds as to why this happens. God bless you!
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