I have a bunch of thoughts roaming around in my head and often times they don't make a lot of sense but I figure I would write them down as there was an incident on May 15th.
I came home before going to get Nikole from Lagoon (an amusement park), since she went with the school for USU physics day. I get home and pull in the garbage cans and walk up the front steps, what I see is Rhett sitting there mostly clasped on the floor right in front of the door in the house. I knew he had just gotten home and I thought Gavin had helped him get into the house like normal. I asked Gavin, as Rhett is gasping and really struggling to breathe, "Did you him Rhett into the house?" Gavin said yes. I asked him what happened.... No answer among all the kids, so I turned to Rhett and asked him what happened and as he is still trying to recover and looking slightly blue, purple, gray, and white. Gasping he tells me that his oxygen tank was almost out. So Rhett basically walked from the bus up 7 steps into the house and collapsed next to his concentrator. My instinct is telling me that we need to move and after seeing that happen I feel even more. So in the process of planning a huge event, trying to get the house cleaned up and painted than getting sick on top of everything has made me a little on edge.
This huge up and coming event that I am planning and praying it is pulled off that I am actually scared about is Rhett's birthday!! I know you are thinking, why would this cause you so much stress? Well the main reason would be that if anything health wise happens to him before his birthday then it will be sad. When he gets sick he is usually really really sick, and there have been a few times that the doctor thinks he needs to be hospitalized. I never really plan for anything because of this, and if I do it is just short notice like less than a week, but with his birthday I have thoughts going on in my head that will be crushed if they cannot happen.
Here has been some of my ramblings as I go to work and try handle things in my head....
As I planned this huge event my heart races. It races at the thought of something bad happening before hand, crawls into my mind. I pray that everything turns out as I would like for them to. I honestly hope and pray for the people to come and the storms to stay away. Because he struggled so much and there is very little that we can give him as a "gift" the party and the many friends and family that can come would be my gift to him. I can't imagine the struggle that he goes through, but to see a smile on his face and his siblings faces are priceless. As we build good and happy experiences and memories we are able to endure this hard life that we have to face everyday.
Do you know what it is like to watch someone you love struggle to breathe and live on a daily basis for years on end? Do you know the sorrow of having to tell your child no because they could easily get so sick they might end up in the hospital? Do you know how hard it is to try to treat your child like any other child and know deep down that they are not like any other child? Have you ever prayed that if death is close it either stays away or happens very quickly just so you don't have to continue seeing so much pain from your child? Do you watch your child struggle through school because they want to be "normal" but often times fail classes because they are too tired and overwhelmed and have checked out? When you are talking to a child who you are trying to treat normal and people look at you like you're crazy what do you do? What I do is look at them back. Most of the time when I make eye contact with someone "the look" goes away. Why is that? Are they embarrassed or offended that I'm trying my best? If you are curious why not just open your mouth and ask. Let the person know you are curious. I mean it isn't like you can Google a person that isn't famous and the web and will tell you everything about them. I honestly think that if you approach a person you are curious about and ask them about themselves they would be more than willing to talk to you, and grateful to not have the weird stares and whispers behind their backs.
As I go to work and see these kids I work with, I wonder what their family life is like. How would they feel in Rhett's shoes? How would their family deal with it? What would happen to them? I don't dwell on these long, but every now and again I just wonder. I am looking forward to speaking with the geneticist next month. We haven't seen them in a very long time. I only got a phone call to tell me about what they found in our family's blood. I wonder what they're going to do, or want to do now that we have a few answers.
See I told you my mind is often just a bunch of rambling that don't make lots of sense. I guess that is most everything for now. This is what I sent to everyone that I know I hope he gets a great turn out, then I can focus on getting my house ready to sell and l finding a new place that will fit my family better.
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| Yes I printed it off to take a picture or it. :) |
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