A Lesson about Vocal Cords

Lane questioning my intelligence on this subject matter.

Let me teach you something that I didn't learn until the age of 34, the day after Lane was born...vocal cords do more than help you vocalize! Maybe you are reading this and rolling your eyes at how I couldn't have figured that out before now, but I am choosing to believe that many others are just as ignorant to all of the functions that vocal cords serve.

As it turns out, vocal cords have a lot to do with breathing, eating and (of course) vocalizing. Your vocal cords should open and close when you inhale and exhale. (Mind blowing.) They close when you inhale so that other things do not get into places where they shouldn't go. (i.e. food, spit, liquid) They open when you breathe so that air can get to where it needs to go. (i.e. lungs)

This picture shows how healthy vocal cords function

Lane was diagnosed with Bilateral Vocal Cord Paresis/Paralysis. This basically means his vocal cords are mostly frozen. They do not work like that should. His happen to be frozen in a closed position. This means that he has less of a chance of things going where they should go. (i.e. food, spit liquid into lungs) It also means that he has a more difficult time breathing since the air has such little room to squeeze through. The following picture shows Lane's vocal cords. That is about as far apart as they get. So, he can breathe on his own for awhile, but he has to work hard and easily tires.

Lane's vocal cords

Vocal cords can change over time. It is fairly rare to grow out of Bilateral Vocal Cord Paresis/Paralysis, but it has been known to happen. Thankfully there are surgeries that can be done if needed. There is not a surgery that can make the vocal cords function like they should. In Lane's case it would be a matter of opening up that gap a little more so that he can breathe easier, and without a trach. It would stay more open and not be able to close. The problem with doing that is it could create other problems. (i.e. aspirating/choking) We are praying for a miracle so that we don't have to make such tough choices for him in his future. He has endured more in his 8 months of life than I have in my 35.

Do you see how complicated vocal cords are?! Who knew they did such important work?! This leads me to another, very important, conclusion...Ursula must have figured out a way to take only her voice, but still allow Ariel's vocal cords to mobilize so she could breathe. 😲

A Tribute to a Special (Needs) Father

Dear Daddy,
I know I wasn't what you were expecting and that life has really changed since I made my grand entrance. I know things haven't been easy. I also want you to know that I am so thankful you are my daddy. Here are just a few reasons why I'm so thankful for you today and every day.

Thank you for not giving up on me even when you are feeling hopeless. Thank you for not leaving me even in the darkest, scariest hours. Thank you for coming to the hospital every day during my first two months of life, after you'd worked a long day. Thank you for taking the time to learn how to take care of me and all of my extra needs. Thank you for holding my hand to comfort me when I cry. Thank you for not being afraid to hold me, even when I have been attached to various machines and equipment. Thank you for singing silly songs to me. Thank you for cradling and bouncing me when I am inconsolable. Thank you for getting up in the middle of the night to take care of me. Thank you for being patient with me while I try to learn how to do things at a much slower pace than other kids my age. Thank you for taking care of mommy when she struggles to find strength. Thank you for being brave enough to share your feelings of uncertainty, anger, and fear with others and not holding it inside where it could grow into resentment toward me. Thank you for taking such good care of my sister and showing her what unconditional love means, so that she will be a good teacher for me. Thank you for taking care of daily tasks around the house without being asked. (Okay, Mama told me to write that one.) Thank you for loving me even though I'm not exactly what you'd hoped I'd be. Thank you for not giving up hope that one day I can be the son you prayed and hoped for. Thank you for being an example of what it takes to be a real man. 




It's because of these things, because of you, Daddy, that I will achieve great things and become someone you will always be proud to call yours.

Happy Father's Day. I love you.

Love,
You Special (Needs) Child

*If you know Lance, you'll know the song in the slideshow has a special meaning to him. It is also a perfect description of his attitude toward fatherhood.  

Lessons on Facing Your Fears

What do you fear? If you made a list of fears what would be listed? I am going to start with the most obvious fear for most parents...an illness or death of a child. I was thinking, just yesterday, of how much my life has changed since he came last October. How so many things change when you have a baby, but so many more things happen when your baby isn't healthy. It's one of those things you fear, but never fully understand. I was getting ready to type, "never understand until you live it," but that's not even true. I still don't understand. My life is just now starting to feel a little more like my own. 

The last 7 months have been somewhat of an outer body experience. I have moments, multiple times a day, when I have to remind myself that this is actually happening. This is now my life. As I put on gloves to suction my baby...this is actually happening. I can't believe I know what it means to suction...this is actually happening. As I try to calm a baby that I know is upset, but I can't hear crying...this is actually happening. As I schedule nurses to come to and from my home...this is actually happening. As I call organizations that I have been referring other families to on a professional level for personal help...this is actually happening. As I realize that I can't send my child to a normal childcare facility...this is actually happening. As I work to organize 5 binders of paperwork for someone who hasn't yet turned a year...this is actually happening. I could go on and on.  Having Lane has given me a new perspective on life. He has made me a better person in so many ways. I still wish I wouldn't have had to learn these lessons this way, but at least I am trying to pay attention to what I can do with what I have been given.

My husband doesn't eat steak. Isn't that so weird? I  used to think so. It wasn't until I found out the reason why that I started to have a little bit of understanding. He's had a fear of choking since he was little. The texture and chewiness of steak, which ensues pleasure for most, sets off his panic feelers. Anytime Avery coughs or sputters while eating, he quickly runs to her rescue. Lane's vocal cords are fixed in a closed position.  This means there is less of a chance of him aspirating, but makes it harder for him to breathe. We have to be very careful with the way we feed Lane. He has a sensitive gag reflex. We helplessly watch Lane gag and choke on his secretions and food numerous times a day. Sometimes when he throws up, he aspirates on his vomit. This is so hard to watch. His body goes rigid, he reels his head back, eyes bulge and he gasps to catch his breath. It's is terrifying every time. It breaks my heart. I know it is excruciating for my husband, given his preexisting fear of choking. My husband actually handles Lane choking and throwing up much better than I do now. I am amazed at how calm and patient he is with Lane in those moments of panic for me. We have heard from many other parents that vomiting is just a part of the first year of trach life. Hopefully it will lessen and cease soon. 

I had the best childhood. When I think about being a child, I'm filled with warm fuzzies. I loved being the youngest in the family and having two fabulous older siblings. Friendships have always been extremely important to me. Most kids have hobbies or activities they spend their time doing.  I remember my mom constantly wanting me to get more involved with activities at school. Join the debate team. Try out for the play. None of those things enticed me. The only activity I wanted to participate in was socializing. Keeping positive relationships was my hobby. I would attend all of the sporting events, but that was just to talk to my friends. My parents quickly learned that if they wanted to punish me they needed to ground me from social events and the phone. That was the way to really make me regret my decisions. I know that sounds like most teenagers, but the importance of friendships didn't end with age. Friendships are still very important to me. I still talk with most of my close friends from childhood. Socialization is what my soul craves. My greatest fear is being ostracized. 

Once we had Lane, other trach moms warned me about taking him out into public with his compromised immune system. I brushed off their warnings thinking I just needed to get his immunity built up and it would be fine. It wasn't until after we brought him home from the hospital that I realized I couldn't take him anywhere. Not only because of the fear of illness, but be because of the amount of equipment and supplies he required. We didn't have any help with respite for him during that time. I felt like a prisoner. Not just in the house, but in his room. I was living in the bell jar. I had arrived at my personal hell. Watching my baby struggle and not being able to get any socialization. Two of my biggest fears came together at once. I had to live one day at a time. I had to pick myself up every morning to fight a daily battle. I know that sounds dramatic. I hope it does because that how it felt. Things are worlds better now that w have nursing. I believe it saved my marriage and my life. It allows me to go to the grocery store or take Avery on a play date. It allows Lance and I to go out to eat together occasionally. It allows me to write this blog! 

Lane has put things into perspective for us He has forced us to face our fears. He has taught us that we can go on even when we feel like we can't.  We can fight battles that seem impossible.