Happy St. Patrick’s day. I never remember this holiday and this is the first year I dressed my kids in green. That’s actually not true at all. They dressed themselves. Including SJ who apparently does not own one single piece of green clothing except for this hand me down flower girl dress.

I guess that means fancy dress it is! The kids were so excited about this day that at the last minute I made a shamrock for SJ’s lunch using a green apple and kiwi.

SJ loves green apples and kiwi are her favorite, so this is not just about aesthetics. It will be eaten!

Yesterday was a busy day. I had a doctors appointment with my GP and then we met with the geneticist at the hospital after that. All of this hearing loss stuff has always been about my daughters, but now that I am in the mix thank to the genetic testing it is allowing me to pursue getting some real help with my hearing problem. I will have my first ENT visit on Monday and maybe I’ll get a hearing aid after that. According to my test results I only have a 65% word recognition in my left ear and 80% in my right. So if I ever laugh at something that was not supposed to be a joke or say you’re welcome when you didn’t say thank you, now you understand why. It’s a serious problem that I have just learned to live with, but I am looking forward to finally getting to the bottom of it!

So there has been a lot going on plus we’re about to travel to Texas for spring break. I say all of this to warn you that I might not be blogging as much for a while. I will still be here and I will still be writing, but actually some of my latest writing time hasn’t been on the blog because  I am currently working on two books. I rattle that off like it’s nothing, but I’ve never written a book before. So it is definitely something, but who knows what will come of it.

Anyway I just wanted to touch base in case it looks like I have fallen off the grid for a while, but it may not even be that big of a deal. Time will tell.

Have a great weekend.

Elle is almost 4 months old and I am sorry to admit that I have neglected to share updates, but I was waiting. Waiting to learn more about her hearing.

Since the last time I shared she had another ABR and it was a good appointment. The audiologist felt like she got a final reading and we won’t need to do anymore ABRs. Praise the Lord!

Here is what we know. Elle has mild hearing loss in the left ear and is right on the line of normal on the right ear. That means we will wait until she is mobile before we put a hearing aid on her left ear. When she is old enough she can decide whether or not she even wants to bother with the hearing aid. That is how mild her hearing loss is. She could potentially get by without any intervention at all. That’s really awesome, but it gets even better.

I was waiting to share this news because I really wanted to get the genetic test results back. Once that came I would be able to exhale. I called the hospital last  week just in case it was ready, but it wasn’t. It took six weeks and when I finally got that call it was really bad timing because I was on my way to pick up SJ from school. I couldn’t wait any longer though I wanted to know. I was assuming it would be a really short phone call confirming that Elle’s hearing loss is the same as SJ’s, but it wasn’t. As I am driving along I was trying to take in all this mind blowing information. At the stoplight I grabbed some eyeliner and scrap paper to try to jot down some of what she was telling me.

The geneticist said SJ’s genetic mutation is typical severe to profound deafness and Elle’s is mild. I couldn’t hold back my exuberance. That’s great news. I exclaimed So it should stay mild? and she said yes. I could tell the geneticist on the phone was glad that she was able to rejoice with me. I’m guessing she has to make a lot sad phone calls when it comes to DNA results. I could hardly control myself I apologized for being so dramatic and I told her I had been expecting it to be different. I didn’t even know that it was possible for them to have two different forms of genetic hearing loss.

She said the only way this is possible is if either the mother or father have hearing loss. She said it could potentially be so mild it was never diagnosed. I jumped in before she even finished. That’s me! I know it sounds weird to be excited to claim responsibility for my child’s genetic mutations, but I have had trouble hearing specifically on my left side for a long time. Even on the blog  I have talked about how I can’t hear high pitches. I have written about my self diagnosis for Meniere’s disease, or how I went to have my ears checked again when I was pregnant with Elle. Except I never felt like the Doctors took me seriously. I never stood up for myself and demanded answers or treatment. When the last audiologist never called me back I just dropped it. Yes, my hearing loss is a nuisance, but I manage. You know how it is with moms. We take care of everyone else first and our own needs get put on the back burner and forgotten.

So basically for the past 4 years we have assumed that J and I were both carriers of hearing loss because we can hear, but in actuality J is a carrier and I have what is called autosomal dominant hearing loss. I THINK. Don’t quote me on all this. I still have a lot to learn. When I casually mentioned to my mom that I am not good at genetics in the same way that I am not good at math. She plainly said “Understanding genetics is like rocket science. Don’t feel bad.”

I do hope to learn more when we meet with our geneticist in a couple weeks. I didn’t want to wait that long to share this news though. It’s such a huge relief to me. I had pretty much put my whole life on hold, not in a way that I resented, but my brain did not have space to be creative, work on blogging, photography or any additional endeavors. I was waiting to see how much Elle would need from me. I was waiting with bated breath to find out whether or not she would loose the hearing that she does have. No one other than God himself knows what each day holds for any of us, but at least for the most part I can rest now knowing that Elle’s hearing loss is stable and she will need very little intervention in comparison to having cochlear implants. I would have been fine either way, but this brings me so much peace. He always knows my needs.

When I saw the Duracell commercial about Derrick Coleman for the first time I cried. When I watched it for the 10^th time I cried. I tear up pretty much any time I hear that monologue because it reminds me of SJ and how focused and driven she is in the midst of adversity.
I recently checked out Coleman’s book No Excuses from the library and since then I have recommended it to everybody. If you have a child or you yourself have any form of disability I think you would be extremely encouraged by Coleman’s story.

A lot of it I can relate to because of my own connection with hearing loss. SJ started ballet recently and I feel like reading No Excuses has allowed me to become an even better advocate for her. I was able to tell the instructors that she is capable and you don’t need to baby her, but also giving practical information on how she may understand  more when you are facing her and she can read your lips. Eventually she’ll have to be vocal about her needs, but until then I am there to do it for her.

The book was full of all kinds of excellent advice without just spelling things out in a preachy way. There was also a lot of behind the scenes football stuff. I am not a huge football fan at all. I know pretty much nothing about the game, but I still got a lot out of it.

For example there was one part of the book where Coleman makes it onto an NFL team and he messes up during a game. He knows that he blew it and so he immediately apologizes to the coach and the coach says 4 simple words “Don’t worry about it”. At first I took this as a really great reply. How sweet that that coach would give him grace during such a high pressure event. Yeah I really thought that, but what Derrick was thinking was Oh no. They are done with me. He said you know that if a coach ever stops correcting you they no longer believe in you. The fact that this coach let him off the hook meant that he was also going to let him go. And Derrick was right. After that he was sent packing.

I was inspired by this tiny little nugget, because as a momma who can tend to be big on mercy it made me think about the importance of correction. I’m not saying that I have to constantly play the role of coach and not a compassionate mother, but that’s not the point. The point is we correct our children because we value them and even though I know this is true, it was still a good reminder for me.

The next day my son was complaining about how his friends get to stay up past 10:00 every night playing video games and he was showing resentment toward me because I don’t let him do that. I explained how those kids are either exaggerating or maybe their parents really don’t care, which is scary. Then I gave him the football story about Derrick and the coach. I said It might be easier if I let you do whatever you want and never correct you, but that’s not what’s best for you. When that coach said “Don’t worry about it” he basically was saying you are not on my team anymore so I’m not going to waste my time. But, son you are on my team. And your dad and I are always going to care about you and instruct you. You may not like it, but we are trying to make sure you turn out to be the best player you can possibly be! We want you to win the super bowl!”

Yes. I actually went there with the sports analogy.

Back to the book, if you are craving an uplifting true story you should give No Excuses a chance. Derrick Coleman defied the odds by becoming the first legally deaf offensive player in the history of the NFL. And not only that he saw victory on the field. The book made me so happy for him and for all deaf people.

Two thumbs up from Messy Mom.