Monday, May 18, 2009

The Marathon Just Got Longer

Well, it's been a while and today is a big news day so I had better update this blog.

I will begin by saying that when my water broke nearly 7 months ago, I knew I was in for a 26-mile marathon. And to be honest, I actually thought I was in pretty good shape to run it. The first mile went well, and even during the tenth mile I felt like I would make it to the finish line. But then just as I was at mile 25, feeling exhausted but encouraged by the thought that I was almost done, Brynn got Group B strep infection in her blood (see this post) and the race suddenly got longer. As her oral has declined so far that she will no longer even accept the pacifier in her mouth, much less a bottle, I realized that the marathon was more like 126 miles long. Tomorrow is the surgery for her G-tube, and for several reasons, we are going to have to do the fundo as well.

However, today Brynn's oral progression, surgery, and fundo are not the thoughts occupying my mind. Rather, the marathon distance just jumped to 1,026 miles for another reason entirely--one totally unexpected.

Brynn is deaf.

Months ago, she actually failed her newborn hearing screen; but I never wrote that in the blog because the nurses and staff told me over and over that the hearing screens aren't that reliable and most kids can hear just fine. I'd all but dismissed any thought that she'd be deaf. However, after today's ABR and some other tests to confirm, Brynn almost assuredly has "profound hearing loss" (the industry term for total deafness) in both ears.

It was likely caused by the blast of strong antibiotics she was given for the Group-B Strep infection. That and the simple fact that she was premature and small for her gestational age are all risk factors for deafness.

We don't know if any of her hearing is recoverable. There is a very slight chance that the test could be wrong and we have a few appointments with other doctors to confirm but at this point, it seems the doctors are more interested in finding out exactly which part of the ear or brain is causing the deafness and what our options are for moving forward than in discovering if she is or is not deaf.

I won't pretend to have a lot of energy to run the rest of this marathon. Sometimes I think I could make it if Someone would just tell me how long it actually is--because at least then I could pace myself. But alas, I am consigned to a feeling of shock and numbness instead of knowing just how to proceed.

If I've learned one thing from this experience, though, I've learned that it's okay to mourn the loss of an expectation. In fact, it's a good thing to do. If you feel the sorrow fully, acknowledging the pain and the shock, then you can move on. But if you avoid it, deny it, feel ashamed of it, or procrastinate it, the fear of the pain often becomes worse than the pain itself. So I think I will take a few days to process this new information, do some research on our options and write a little more later.

For now, my readers may know that my hopes are still good. Not necessarily that everything will be rosey, but that we will be able to handle whatever comes. In fact, last July I started learning sign language because my neighbor and her husband were deaf and mute, as well as several people in my local church. They were all such wonderful people that I thought it'd be fun to get to know them and the language they used to communicate. They were patient with me as I stumbled through and I still have a long way to go before I would say I'm fluent in ASL, but I can hold a conversation about almost anything with them.

All the while I was learning, I kind of wondered why I felt so interested in it, but it was relatively easy for me to pick up so I kept going. I even asked Matt if he were up for adopting a deaf child--back when we were filling out the adoption papers and before we finally got pregnant with Brynn. I see now that there was a bigger reason behind my recent, and somewhat random interest.

So I know that God prepares us for the challenges ahead, but this is still life-altering news and will take some time to process.



Team Piggott said...

I'm so sorry to hear about the deaf issue. Let's talk when you come up to the hospital. I'll send my number via facebook tonite.

tclybb said...

I don't exactly know what to say at this point. I'm sorry for the news that you discovered, however part of me is so excited for you and the opportunity to learn such a beautiful language. I've always admired people I've seen using their hands to speak. I would also suggest getting the childrens DVD series "Signing Time". While its geared towards children, I've found the songs catchy and the signs sticking to my memory very easily. I have an extra one if you'd like me to send it to you, I'm happy to do that. I haven't even opened it, waiting for an opportunity to give it to someone. As always, you guys are in our prayers as you learn and grow through this 1,026 mile marathon. Camber

Angela Hill said...

I wish I had something to say that would make you feel better, but of course there probably isn't anything that could be said. Hang in there, she's perfect just the way she is.

Skip, Stephanie, Emerald, Calvin, and Zachary said...

I'm sorry! As I read your post, the poem Footprints in the Sand, came to mind, making me think of God caring you when you needed it most. God does have a way of holding us up when He needs to. Rest assured, along this marathon, God is there with you and will carry you when you need Him most. He has laid a path for Brynn and brought her to you and you to her for a reason. We don't have to understand it all. You are so right in allowing yourself time to understand and grieve for your expectations. Our prayers remain with your family. Hugs and love from our family.

Natalie said...

Roseanda--looking forward to hearing from you. Camber--thanks for thinking of us, you're so sweet. Angela--I must agree. Brynn certainly is a perfect baby. Stephanie--I love that poem, and thanks for the hugs. Hugs right back at you, too.

k said...

No matter how long the marathon is, you have the capacity to endure it, because Heavenly Father is your coach and the Savior is also running beside you. It seems Brynn will be your a life-long coach in teaching all of us to have stronger faith. I also wanted to add I've known children as well as adults who have had successful cochlear implants (if that's an option/direction you choose down the road). Thanks for sharing the update. I'd love to see more pictures of her beautiful smiles!

Anonymous said...

You know, even with Deaf parents, I don't know how I would handle it emotionally if I found out my child was deaf. It has to be hard, because parents certainly just want the best for their children and to have all the opportunities that life can give them. I'm happy to help you to continue to learn ASL, and I'll keep your family in my prayers. I know Heavenly Father will always be there for you. :)


Erica said...

Your positive attitude and faith are an inspiration to me. As you also said, I know there is a reason for all of this, and you will give Brynn the best life she could possibly have. She is one special spirit! What a blessing to have her in your home. I agree with Amy: I'd love to see more pictures of her darling smiling face.

Anonymous said...

I completely agree with you about accepting your feelings. It makes easier to acknowledge what you are feeling so you can move on. Natalie I hope you know you guys are in my prayers. Brynn is so blessed to have you as a mom. despite what happens you can do anything little by litte.


Erin Axson said...

Miss Natalie,
I have had the opportunity for the last 3.5 years to work for a wonderful company called two little hands productions. This company produces the series 'Signing Time' that Camber is talking about. My boss, upon finding out that leah (her daughter) was deaf, was hurt, angry, sad and overwhelmed and she talks about her story on our website. Leah is now a young lady that is obsessed with reading and playing with her friends and this perceived stumbling block of deafness has not slowed her at all!
Let me know if you have any questions. We have a huge network of moms that have deaf children all across the united states and I would be more than happy to point you in the direction of a group of mamas near you!
My thoughts and prayers are with you!

Melissa said...

Hello, this is Melissa Lee (Josh's wife) I have been reading your blog for awhile now and I just wanted to tell you how impressed I am with your strength. I believe that you have the ability to handle almost anything. Your little family is in our constant prayers.

Josette said...

I am so sorry for the loss of another dream. As being parents of preemies we have this image in our head of these cherub like babies that are perfect in every way and as each milestone that we should hit and dont and some they never will we start grieving. I hope that Brynn's surgeries go well. There is not a day that I dont pray for Brynn too. Mathias is having a rough time as well his ears, eyes and brain are perfect but his lungs and being unable to get off the steroids is our battle. He is not growing due to the steroids so as he gets older and is trying to do big boy stuff like sit up and push up on his knees his lungs cant handle the strain. I got the talk again last week( you probably know the talk) I was told that we might never make it out of the hospital that there may come a time that we will have to stop treatment and let nature take its course. However, we both know Gods amazing grace and the power of healing and I know that both our babies will turn out okay even with these bumps and hurdles in our way.

Alyson said...

I finally added you to my blog feed so I can keep up with your updates. I have seven kids who are all in great health. I've learned a lot, I've grown a lot through being a mother. I am in awe of you. I think you're handling everything beautifully. It is true—there is nothing wrong with mourning a disappointed expectation. New information and new situations take a while to process and accept. I love to watch the way you take the information, slip it under your belt with everything else, and move on with a smile on your face. Does the smile always have to be there? Absolutely not; no one expects that of you. But your attitude is an inspiration to me, in the things that crop up every day with my seven. Love her, cherish her, move forward. That's what I see you doing.

You're amazing.

Keep on keepin' on,
Blaine's Alyson

Anonymous said...

I don't really know what to say except that I know in my heart that your faith will help you all through this. There are no better parents in the world for Brynn and your interest in ASL proves it. Your faith continues to inspire me.

Taz said...

Thank you so much for the luck!! I'm praying for you. It must be tough with Brinn but I know you, she's a fighter for a reason. She got it from her parents. You're the best parents I know, she was meant for you to be her parents. I don't know if anyone else could have the patience. I love all three of you. They are right though. You child never likes to hear that they aren't good enough or you want them to change. Brinn is perfect, beyond perfect. She was chosen for these latter-days. Anyway I'll be praying for all of you. <3

Andrew said...

I was glad see your baby at the church. I hope you understand, I was born deaf caused by my mother rubella. I think same your feeling from my mom. Best interest is ASL for me to learn at the Deaf School.

Join us at the deaf social (church activity) next few months. I was there it was fun and meet other persons last saturday night. Look at photos at my facebook web site.


Deb said...

Hi Natalie,

I am sorry to learn of your news about Brynn's deafness, and admire your courage, strength, and positive outlook for everything you have already gone through, and for all you have yet to experience. You're not alone in the world of raising a precious daughter of God with special needs, and you know that she must be such a special one of the many for what she chose to be able to come to earth, gain a body, and have you as her parents. Heavenly Father loves you all, and trusts you, and knows what wonderful parents you will be to this sweet little spirit.
I don't know if you know of this poem, but because I work with special needs children, several of whom are deaf, a parent of a profoundly disabled child shared this with me years ago, and I think the message is wonderful..I hope it lifts your spirits, and gives you another perspective.

Take care, pray hard, and work harder,

Love, Debbie Amundson (aka GmaA)
(Sorry this post is so long)


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Diane Terese Christian said...

Natalie: My grandson Noah was diagnosed at 18months with Autism. Receiving news other than “perfect” can be devastating and frightening no matter how strong ones faith. Life moves forward you adjust and you learn and you change your ideas of “perfect”. We have been so blessed with loving, caring, insightful people we would never have known. We are no longer afraid nor feel hopeless. We love Noah more than I can possible ever explain in words. We never knew another entire world out there existed before Noah entered our lives. We have gained more than we ever imagined. All is well. We have been challenged and pushed beyond what many families experience when there are no “imperfections”. Life has been different but life has been good to us. Heavenly Father has blessed Noah with much improvement. Because Noah was born in a time of great advancements, early intervention techniques, and awareness, we have been blessed. Miracles happen, blessings are bestowed, and love conquers all! It is not all perfect but then again what truly is? Love Diane