A trach! I’ve talked about one several times, and I’ve had more folks talk to me about it, after reading about it on Quinn’s posts. I think it’s all the negative or inaccurate stereotypes that go with it.
Can people that have them talk? Can they eat? Can they take baths? Can they communicate at all? Do they have to be hooked up to ventilators? Do kids with trach’s have to have a nurse with them at school? Can anyone take care of them when they are not with their parents or does it have to be a nurse? Not to mention the vanity appearance issues, having that thing in their neck. Then what about cleaning? What about cleanliness? What about infections?
Basically for answers, trach's are like bicycles, there are many different kinds, but usually people can talk, they can eat, they can bath and swim, kids usually do have nurse's with them in school, Chrissy and Annette both are still willing to care for Quinn and Chrissy has already figured out state issues and is willing and able to watch her after a little education about what ever Quinn might get. So that is one thing to be thankful for. You can see the trach, but compared to how loud her breathing is sometimes, it will be a wash. Cleaning can be done once a day for the most part, and infections can be an issue, but can be simple and easy as well.
Let me put a different spin on it. Quinn currently has a feeding button, and all it is, is a hole that helps feed her. We could live without it, but we would be spending 3 hours 3 times a day working to get her enough calories, so I did not have that hard of a time with that, as she needs nutrition, and that did not change who she is. A trach is simply a hole to help her breath, instead of fighting so hard, and she could us all that energy to put into improving instead of surviving.
A trach, however seems to have such a weird stigma. I know I am finding I had that negative stereotype of a trach and a person with a trach. I don’t like it, but it’s the honest truth. I’m also finding many other people feeling the same way, yet no one can articulate why they feel that way. The strangest part for me, is that I’ve known two people with trach’s, granted they were both older, and they were full of life, so I should have felt differently, but I’m struggling to change my way of thinking around to the correct views. I’m finding that over the past 4 years, I had a few misconceptions about disabilities in general, and here I have had a daughter with disabilities and still have misconceptions about other disabilities. I’m human, and I’m the first to say that I’m not perfect, I’m sure thankful for Quinn for so many reasons, one of them being the fact that she has opened my mind to so many things, and seeing things for what they are, not the crazy way that they were portrayed in the media, the past, or stereotypes so many of us have for no reason at all.
So things I have learned, a trach is similar to Quinn’s G button, in the sense that it is simply a hole that will help her be more successful. Her G button gives her calories to survive, so we can focus on other things and she can enjoy the food she does eat, rather then forcing calories into her mouth and making it a miserable experience. A trach will help Quinn go from having so many moments of struggling to breath to being able to focus on life and the fun she can have. I think back to my grandmother, who told me on numerous occasions that moments she could not catch her breath were the scariest moments of her life. Dr. Swisher talked about Quinn’s airway as a straw that can collapse when she is sick or stressed, and when she is working so crazy hard to breath. All the work that she is putting into breathing is getting taken away from her heart, lungs, and brain. After lots of tears on my part, I am getting to the point where I am ready and thankful for getting onto the fast track of Quinn getting a trach. I’m not there yet, as the tears are still flowing, but at the same time, I know I have been so stressed lately because I’ve seen Quinn struggling. It has not been all the time, so I kept thinking, she will get better. We just need to get rid of the stressors, get rid of the germs, hold her up in our apartment and not let her out into the world. Then I’m reminded that is not possible. I don’t want to hold her up and not let her experience the world. Then I go to the appearance issues and think, how I don’t want her to have yet another thing to set her apart from everyone else, but her loud breathing is already doing that. So having her feeling good, having her breathing calm and quietly, having her being more successful in her body, having a “necklace” with a hole, that helps her be more successful, is starting to be a no brainer.
Life is not fair in so many ways, but it still comes down to the fact that I still have an amazing little girl, who can be more successful with a trach at this time, and knowing that as she gets bigger, maybe we will be able to get rid of it, but right now listening to her struggle to breath, and see her stressed, it reminds me that if there is a way to help her be successful, then it’s a no brainer. At the same time, why do the tears keep coming and why do I feel like we are giving in, when saying, we want the best for her, giving her peace of mind to breath easy. A number of other family members are still working at getting on board as well. So I go back to my faith, knowing that God has a plan, and we still have Quinn, which I am so thankful for. I have to remember my strength will come from the Lord! It says in Matthew 11:28 ” Come to me, all you who are weary and burdened, and I will give you rest.” So this I pray; God, I know you are my strong tower and you are my peace, and I am accepting this today, even right now. Amen!
I also go back to the poem I shared way back when.
"Welcome to Holland" by Emily Perl Kingsley, about having a child with a disability.
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. The loss of that dream is a 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.
1 comment:
Oh, I feel like I can relate, just a little bit. No, we are not dealing with the decision of a trach; but I think each time we do something new for Matthew, first it was his g-tube, and then his g-j tube and then his port, I struggle with acceptance. I struggle with the idea of him being so "different". "Why can't he eat, like so and so? Why does he have to be in the hospital all the time." and the vanity issue: well I am right there with you. I UNDERSTAND! I always joke that it's a good day if I get a shower and deoderant, but Matthew must always have cute clothes, cute adaptive equipment (hence the kimba stroller) and cute accessories. Isn't that funny??
It's such a process, with our special kids, and I always thank God he has given it to me in baby steps. I don't have any words of wisdom for you; but I do offer you my thoughts and prayers. I know you will make the best decision for Quinn; and she's a lucky girl to have such great parents!
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