Thursday, December 19, 2013

big (somewhat scary) news


Ainsleigh's follow up to the follow up hearing screen was this morning. Ainsleigh can hear well in her right ear, but she is severely to profoundly deaf in her left ear.  When we were in the hospital and she failed to pass her hearing screen I said to J, "Hearing loss? We can do that. She's alive." And yes, we can handle this, just like we handle B's allergies, but there is a lot of information coming at us right now and I'm very overwhelmed.


I knew something was wrong. I had the same feeling as when Charlotte died. I went into the appointment expecting bad news, but when two audiologists came in and quietly leaned forward to deliver the diagnosis it still hit me hard. One of the audiologists reached forward to touch my knee and I thought, Oh no, not the gentle pat! I've been on the receiving end of the gentle pat/arm squeeze far too often. 

Then it was a whole lot of words and phrases: There is a 30% chance she will lose hearing in her other ear, we have to be careful with ear infections, she needs early intervention so she doesn't struggle later on, she won't be able to hear well from a distance, it is recommended that you schedule appointments with an ear, nose, throat doctor, a geneticist and an eye doctor ... 

And there I was rocking Ainsleigh in my arms in the small, dim room saying, "After what happened to our first we can do this. We can do this. I know we can do this." That right there is the sign of someone who is doing really well emotionally ...

Now I'm trying to regroup a little and process what we've been told. I'm sitting in a pile of phrases and concerns, thinking about the next step and how exactly we are going to handle this thing I'm so certain we can handle.

I put the news up on facebook - as you do- and all of these wonderful messages of support came flooding in. And while I appreciated every single kind note part of me wanted to say, it's okay! no sympathy or empathy or kindness needed! Ainsleigh is alive, I'm not complaining, I'm happy, all is well!! But living like that is exhausting. I want the support, but I don't feel like I have a right to it. So there is all this lovely support out there and I can't claim it because she's alive (I know that's irrational).  

I think I want someone to tell me it's okay to struggle with this. That it IS hard and it's okay if I fall apart a little bit. That it's not over dramatic or over wrought or over anything. I know hearing loss in one ear is not a big deal when you have a dead baby in your parenting history, but it is BIG. It is a huge issue to work with. It will affect her whole life. And there's a part of me, way deep inside, yelling, WHAT IS WRONG WITH MY BABIES?!

When I got in the car after the three and a half hour appointment this song was on the radio:



It was a good reminder. It helped me to turn away from the "why us" question and lean into my faith. We are not alone. We have a great big God who has sustained and carried us through good and bad, and we have a community of support and love that lifts us up. Twice this week I rushed out of my house to appointments, leaving B in very capable hands, and both times I returned home to dishes washed, laundry folded, and a happy toddler.

There will be more appointments. We don't know why Ainsleigh's hearing loss occurred, or how to proceed, but those appointments won't happen until the new year; hopefully we will gain insight and learn how to help Ainsleigh. We're going to need some help. I'm probably going to fall apart a little bit.

When we were trying to ascertain what was going on with Bennett it took time to figure things out. I felt lost, angry and confused, but now I've adjusted. Watching what he eats and making most of his food from scratch is part of the routine. I just need to adjust. Get used to adding this information in, learn this particular language.

All of my ideas about being a mother and the way parenthood was going to be for me went out the window when Charlotte died. I can adjust a little more. I can get used to the idea that I mother a dead baby, a child with allergies/intolerances and a baby who has unilateral hearing loss. I'm stress eating like it's my job as I adjust, but I have healthy coping mechanisms too. Like this space. When I got home I put a show on for Bennett then sat down and paid attention to the clattering voice in my head that demanded I sit and write a while.

And it worked. I feel a little better already. Thanks for listening.

13 comments:

  1. I don't comment much these days, but I am listening. It seems to me that your reaction is entirely normal given your experiences. You are self aware enough to understand why you might react this way, and I suspect enough to know that yes you can do this, but equally it might be difficult and it is ok to be upset too.


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  2. I don't comment much these days, but I am listening. It seems to me that your reaction is entirely normal given your experiences. You are self aware enough to understand why you might react this way, and I suspect enough to know that yes you can do this, but equally it might be difficult and it is ok to be upset too.


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  3. It is okay to struggle with this though you and I both wish you didn't have to. You'll be all right, the baby will be all right - just another bump in the road.

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  4. Huge past struggles don't make smaller current struggles irrelevant or less struggle-worthy. Ainsleigh is so lucky to have you looking out for her!

    As a random thought that may or may not be meaningful at the moment: my childhood best friend of 9 years had only one ear. I always found it kind of special that because I knew her, I knew which side of her to stand on or sit on or face when we were talking. I think as her friends, we all thought we were privy to classified information as we worked together to make sure Sheena could hear. :)

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  5. I vacillate from "my first baby died; I can handle anything else" to "my first baby died; how the hell am I supposed to cope with another struggle?" Sometimes I think I've gained strength and fortitude, other times I think losing Eliza used it all up. So yes for heavens sake, it's ok to struggle. To have a pity party. To wallow. To rage. Because when Ainsleigh needs you to suck it up and come through for her and advocate for her and research for her and take her to a zillion different specialists, you'll do that, too. I'm sorry you guys have to cope with one more big adjustment, when living without Charlotte is hard enough already, I'm also glad you have two bright, healthy, gorgeous kids here, who obviously make all those adjustments worth it.

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  6. I always think the fair thing would be that anyone who has lost a baby should get a free pass for an easy subsequent pregnancy and a totally healthy, straightforward child. Of course you are going to struggle with this a bit - anybody would - we all want our children to sail through life, untouched by any kind of distress or discomfort. And, of course, it's ok not to be ok now and then. You will all be fine in the end, though, because you know how to help yourself and your children and because you have a strong faith and a strong support network.

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  7. Ainsleigh will be alright. My good friend from high school has a complete deaf granddaughter. Everyone adjusted. She is 5 now and is everything the others kids are in. In fact, she is the life of the party! After the shock wears off, you too will adjust. My DIL taught my Gkids sign language from day one & we all sign as a second language!
    One of my greatest blessings in my teaching career of middle school students was teaching Grace. Grace was blind. I thought to myself how would I ever teach a blind child. She stayed in the normal classroom, did all the regular assignments. The technology we had for her was beyond belief. Grace always made A's and we didn't make it any easier for her. I loved Grace & still do. She was very popular. Ainsleigh will do fine, mama. I know I am not close enough to run over and fold laundry, but I pray! God bless & much love. Gale (Fittsie)

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  8. OH Angela , my heart aches and tears flow. It IS difficult to struggle with our children or have them be "different" regardless of the family circumstances. Charlotte is a reminder to remember what we have and what we want. Both B and A will overcome their needs and pull on their strengths - just as you and J have. Seeing your struggles and your blessings reminds us ALL.

    For what it is worth, my husband has unilateral hearing loss and manages quite well. AS a speech-language pathologist, I am continually amazed at how he compensates. His biggest complaint - surround sound at the movies, because he misses stuff at times.

    Hugs, blessings, support!

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  9. Huge (((hugs)))!!! It just sucks when we get thrown curve balls after already losing a child. Just doesn't seem fair we have to "deal with" yet another thing. So yes while in the grand scheme hearing loss is "easier" to handle than the death of our babies, it's still something new to face so you are still entitled to be worried, frustrated etc.

    2 of my children have bilateral loss & wear hearing aids. Through testing we discovered it's something they inherited from my husband (who is also supposed to be wearing hearing aids) and the rest of my living children get tested yearly with the audiologist as they could be at risk of losing their hearing as well. We have been told my 2 kiddos who have the hearing loss are at risk of complete loss, so I understand the gravity of what your fears are. Please feel free to message me if you'd like to talk to a mom who has kids with hearing loss.

    I am thankful they caught this so early for you both, it will be a huge help as she continues to develop.

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  10. You are absolutely allowed to struggle with this. What happened to Charlotte was definitely worse, but still, Ainsleigh is a different baby, and she'll have her own issues for you to work through. Just like Bennett. Don't feel guilty because you know it could be worse! Struggle isn't relative, and if you found out about Ainsleigh's hearing loss and just flat out didn't care because you know it could be worse, then what kind of a mom would you be? The fact that you're both grateful for her and that you're struggling with this means you're a good mother, plain and simple!

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  11. Brooke pretty much nailed what I was thinking/have been trying to say.
    Thinking of your family.

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  12. It is absolutely ok to struggle with this and to fall apart about this, whether a little or a lot. Regardless of history, there is a grieving process for this kind of news as well as it involves grieving the loss, in a way, of your plans and expectations for your child. Not that Ainsleigh won't lead a wonderful, fulfilling life with a hearing loss, it's just that life now looks a bit different than what you were expecting, with new things to consider, learn and take into account, and new things to adjust to. And if history shows anything, you are fully capable of getting there, even if it involves an occasional melt down.

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  13. I am a 53 year old elementary school teacher who has a severe hearing loss in both ears. My journey has not always been easy, but I feel blessed to have had parents whose expectations were that I could do anything I set my mind on. I wear hearing aids and have done so since I was 5 years old. There is nothing in this world that will stop your daughter from accomplishing what she wants. You have already faced the worst fear of most parents and this new challenge will be a walk in the park, but nonetheless a rocky walk at times. One day at a time is my mantra.

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thank you!

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