Disclaimer: There are many, many videos in this post. Don't worry, they are all very short. : )
Why is Marissa's voice so important to me? Why does the risk of the reconstructive surgery changing her voice forever weigh so much heavier on me than the increased risk of aspiration, or any other issue, risk, or problem?
She was about 9 months old but then she got pneumonia, so she could not tolerate the PMV again until she was about 11 months old.When the idea of the trach was first brought up to us, the fact that she would not have a voice was the first thing that popped into my head. It was the issue that made me the saddest about this new life we would all be entering into.
I love baby voices. A baby's cry can bring me to tears myself. Especially life's first cry. No words can even describe what an incredible sound it is.
I absolutely adore baby babbles. If I am having a bad day, all it takes to put a smile on my face is to hear a baby laugh. I know Rissa is not a baby anymore but she has the best little kid voice I have ever heard.
Starting the night she was born, she was intubated for a week at a time, every other week, until she got her trach. She was never off the vent long enough for her vocal chords to heal so we never really heard her true voice. Any vocalizations we did hear were very quiet, stridorous, and raspy. These sounds were still so precious to me. It took almost a year after she was born for her to tolerate the PMV (purple speaking valve) so she could have her true voice back.
I can't explain what it is like to watch your baby cry a voiceless cry, other than to say it gives me an awful, aching pit in my stomach. It is pitiful to watch your baby try to use their only means of communication only to be rendered silent. Other trach parents certainly know what I am talking about. Even when she was on the vent, the effect was the same. The first time my mom visited Marissa after she was born, she told me the thing that made her the most emotional was watching her cry that silent cry.
Other trach parents can also relate to learning to listen for new, untraditional sounds to clue us in that our babies need something. Soon after we brought her home, I could be in the other room and immediately tell when Marissa started crying. While there is an absence of a voice, they do make different rattly sounds with their secretions moving back and forth inside the trach tube. And a cry rattle sounds different than any other.
Here she is the first night she was able to tolerate the PMV. She could only make the tiniest, softest noises but it was music to our ears.
This video shows her voice getting stronger, about a month after she learned how to tolerate the PMV. She was almost a year old and we could finally hear her laugh!
This video was shot when she was about 13 months old. She was finally babbling!
And this one (I have posted before) is one of my favorites. She was about 14 months old and saying her first word. Dadadadadada!!
I have always taken my voice for granted. I used to think nothing of going to a football game and screaming at the top of my lungs till my voice gave out (sorry Michelle!). Now, even though I still do my fair share of yelling at games, I always reign myself in by thinking of how Marissa has fought all her life to have a voice. It makes me thankful for my own.
I know that if this surgery changes Marissa's sweet voice permanently, I will still be thankful. Thankful that she is able to breathe without a trach. Thankful that she has a voice at all. Thankful that she is here with us at all.
11 comments:
Her little voice is so cute! I loved hearing it! Thanks for sharing. Thank you also for reminding us all not to take our voices for granted. Hugs!
Great post! Thanks for sharing your heart with us. She does have a great voice (and smile...and dance moves...) and it is part of her essence, so I can understand that worry overshadowing the physical ones. Like the new blog background, by the way!
It is amazing what we all take for granted in this life! And then, one small being comes into our life and everything changes!
I totally understand your feelings on this! And, Marissa does have a great voice! Something tells me that her voice will always be great, whatever the outcome may be! She is truly a fighter and has such a zest for life!
Hang in there Momma! Love, Hugs and Prayers!!!
What a precious voice! I think people totally take their kids voices for granted. Sometimes When I see a Mom with a screaming baby, I want to tell her how lucky she is that she can hear him! Praying for you as you approach this upcoming surgery!
I totally understand what you are saying. It was the hardest part for me as well to see Maggie crying and she wasn't making any noise. Maggie can pass a little air around her trach now so we can hear little bits of her but she still cannot tolerate her PMV.
I really love the videos!! I love the one of her babbling!! She sounds great! I really hope everything goes well with surgery!! I know you will be thankful no matter what and you will move on and do what you have to do. However I totally understand wanting her voice to stay the same. I can't explain it either and maybe people won't understand unless they have been through what trach parents have but I completely understand what you are saying. I'm praying everything goes well!!
Loved the videos. Yes, it was SO hard for me to hear Marissa cry with no sound and even today, it makes me break into tears. She has come such a long way and I know she will do well with the upcoming surgery. Whatever voice she winds up with afterwards, will still be music to our ears.
You know, Jax has only been trached for a few months, but when he was intubated for 4 months straight, he has paralyzed vocal cords, and all we heard was air for the longest time. As soon as he starts baby babbling, we trached him. I cried for days! I still watch videos of him babbling and I want to rip the trach out. When he was sick and needed a lot of support with the vent, I heard his voice for the first time. I don't know if it was the air blowing that made the noise pass, but it was music to my ears. So a couple of questions. Does the PMV filter the air? And I'm guessing there is no way to put oxygen on it is there? I really want to hear his voice again, its killing me!
Thanks for making me cry....again ;) rissa seems to have taken the same path with the PMV with camden. Got his around 9 mths, got sick, and here we are at 14 mth, trying to be consistent with it...waiting on that babbling. these videos were so so precious!! Makes me have hope that camden will talk soon. Thanks for sharing....
Marissa has a beautiful voice! I can really understand why her voice is so special to you.
Our voice story is the same but backwards. Christian didn't cry or vocalize for about 6 weeks after his accident. Even when we started the PMV, there was still silence. Not even crying. Then little by little he found his voice and now he cries all the time! I know what it's like to ache to hear something...anything! And you know what, when the doctors were trying to sell the trach idea to us in the hospital, never once did they say we'd loose his voice.
My point is she'll find her voice again somehow, some way.
Oh my gosh, watching every video like that in order really shows you what a strong amazing girl Marissa is!! I love her giggle, always have ... and I am confident that even if her voice changes, it will still be HER. And look how far she's come! From tiny squeaks to giggles to babbles to dadadda to ELMO! :)
What a beautiful voice I loved all your videos how precious. I would give anything for Ashley to have her voice it is so valuable. She can cry, giggle and scream but I miss the babbles and words. She can make them and surprises herself and me with them from time to time but it's to hard for her brain and body to get them out on a regular basis she saves them for special occasion i think. I still have lots of hope this will come with time. I'm sure Marissa will always be blessing you her musical voice it may change but will still be so sweet.
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