I feel like this week I have had to fight for my kid in ways that I have not had to in a while. Most of the time, life is just what it is. Most days don't feel like a fight, they are our normal, but this week has felt like a fight. A fight for information. A fight to figure out who can help. A fight to figure out the next steps to figure out if "this" is what is going on so that we can best help our child. I think the last time we had to fight like this was when we knew Jillian needed oxygen last year but the process was super slow.
I was talking to a friend yesterday about the balance of the fight. You want doctors to listen to you, but you also need them to help you. You don't want to piss anyone off, or they are less likely to help. You have to be assertive, without being a jerk. Kind, but get business done. You have to learn the personalities of different people. Just like you have to change how you phrase things when you talk to different people, the same holds true when talking to medical professionals. I have the gift that over the last three years I have been able to form relationships with many of the people we work with, and most of them are very positive relationships. One of the hard things of this week has been that I don't have a strong relationship with either genetics department or with neuro in Madison. Its not to say that I don't like them, but it is different when you know someone. Like our old GI nurse Lisa knew I was only calling her about a problem if I had exhausted all other options myself, but not all of the medical professionals that we work with know me that well. I always want to do my best to create good relationships with others because I strongly feel like that will get us the farthest. I feel like this week has been kind of like a dance of when to call who and how far do I push (I have had three medical professionals that know me well ask how I was not just loosing it at this point). A lot of times when a medical professional can't help in a situation it is not their fault, and its hard not to get mad. Like when I talked to genetics in Madison yesterday, the woman was very nice, and did not say anything mean, she just told me the facts that they don't do anything about "this" there until a child is older... I felt kinda crushed and mad, but in no way was it her fault and getting mad at her or yelling at her would not help anything, or would it be fair to her. At the end of every day I want to be able to say I treated others with respect.
One of my fears about sharing when we are going through a tough time with Jillian's health stuff is that I wont convey the joy we still feel. Sometimes I worry that when people see me upset that they think that I have given up hope, which is far from the truth. I am always hopeful, but sometimes my hopes might look a little different. In in the stress and the crazy, our lives are still full of joy. God blessed us with one AMAZING little girl (and another one that is getting bigger by the day). Even on hard days there is still joy. Even in the midst of tears there are still smiles. She is worth the fight. She has taught me things about myself that I did not know. God is doing great things in the midst of it all, so even in hard days when I am upset, and I am working on learning that it is ok to express that I'm upset sometimes, there is still joy.
I am VERY excited that we are being referred to a clinic at Children's in Milwaukee that works just with kids who have "this." I am very hopeful that they will be able to help us. It feels like we are moving in the right direction, and after wondering around for three years it feels really good to have a direction to be headed. I'm still trying not get totally get my hopes up, but still hopeful. They did tell us that we are added to the triage list to get us into the clinic but they said there might be kind of a wait and they were not sure how long the wait is to get into the clinic. At this point, when our other option was waiting 7 more years, a couple of months does not feel nearly as long... but I'm still hopeful it is soon :)
Today I was on a page that is for special needs support. I was looking at their pictures of sayings and memes. Some of them made me smile, some of them I shared just with Brent, and some of them made me cringe a little. The ones that made me cringe were because they made it out to sound like special needs parenting is the hardest thing in the world and no one else could possibly understand. I will agree that it is hard to understand something you have never experienced, but saying that one thing is harder then all other things dismisses the feelings that other people are having. EVERYONE has hard things in their life. Everyone has things that might be hard for them but easy for someone else. Everyone is different. Just because my hard is different then yours does not make yours less hard for you. Everyone has things they are working through. Yes some "hards" are more socially acceptable then others, but that does not invalidate that something is still hard to deal with. I try to remind myself (I am no where near perfect at this) that when someone does not react or do something the way that I want that we are all going through different things. Everyone has challenges in their life. Don't beat yourself up because you find something to be hard, reach out to others, find a support system, and do a little dance in the rain, but just because something is hard, does not mean you need to be miserable. Allow yourself to have emotions... that includes both joy and sadness. This world is an even better place when we love those around us during whatever they are going through, maybe you will even learn a few lessons along the way.
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| This one I did like :) |
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