There is a certain amount of loneliness that comes from being the parent of a brain injured child. Not having experience as the father of a brain injured child I can only comment on my own experience as the mother of one. As I sit here typing this on Colby's bed, he is screaming at me. He has been screaming at me all day. I don't know why.
I have changed the TV show, I have taken him outside, I put him in the swing and went for a walk, I have tried to play games, John tried to play a video game with him, I have given him Tylenol, ibuprofen and hydrocodone and he still screams. It is his mad scream. There is a difference. How do I know? Because I spend the most time with him. He has three. Mad, pain and sad. The only time today he hasn't been screaming is when we went to Wal-mart. He went to sleep. Usually he screams in there. I wouldn't have gone but I forgot to buy milk yesterday. The consequences of not having milk for Riley outweighed the potential for screaming in Wal-mart on a Saturday morning.
You might wonder why, if he's mad, would I give him hydrocodone and pain meds? Because sometimes and only sometimes they make him go to sleep and when he wakes up he doesn't remember that he was mad. Today it just made him more mad.
Why does this make me feel lonely? It doesn't really until I get a wonderful email from a mother of another brain injured child. She told me about a conference in Virginia or somewhere for mothers of brain injured children. Angel flights is even flying mothers to the conference. They are trying to get a hotel to donate rooms. It's only a Friday and Saturday. You would think I would be able to get away for a full 24 hours. You would be wrong.
This conference made me realize that the longest I have been away from Colby in the last 21 months is 9 hours. 9 hours out of 24. I certainly didn't go across the country in that amount of time. I went to a hotel to sleep while he was in the hospital. The army paid for the hotel we lived in for three months after he had his stroke. I don't think I would have made it if we hadn't had that outlet.
Anyway this email from an amazing woman (who is a constant inspiration to me even though we've only actually talked like 4 times) made me realize that I am the only one who knows when all of Colby's medications are given. I am the one who knows his crys. I am the one with the patience. I am the one who is the advocate and the caregiver. It is an exhausting job.
I have a wonderful husband. He is good at many things. I don't know that 24 hours alone with Colby is one of them though. They are to much alike. To stubborn and set in their ways. Yes I am talking about a 4 year old as well as a 36 year old. Colby is unbelievably set in his ways and routines. Just ask his preschool teachers.
So anyway the thought of not being able to go to this conference has made me feel a tad bit lonely. It is an isolating experience to go through the things we go through. I know that I have help. Earthly and Heavenly. I couldn't do this without either but at times it is hard to remember that it is there. Days like today are exhausting. It's only 7 o'clock at night and I feel like I've been up for 36 hours.
Anyway all of this brings me back to something I've been tossing around for over a year. I don't know how to get started on it. I'm lost but I know that somewhere out there is a way to help me do what I want to do. I've wanted to start a support website for parents of childhood stroke survivors for a long time. The ones that are out there seem a little to sterile and institutional. Not to mention most of them are for adult stroke survivors. They don't know what to do about a 4 year old who had a stroke. Other sites are devoted to this type of treatment or that type of treatment but none of them list different treatments and resources that are out there.
I am not a website designer. I don't know any website designers. If you are one and I don't know it sorry! I guess I've been a little preoccupied to pay attention to people's occupations. So I'm asking for help from anyone who might read this. If you know of someone who might be able to help me could you let me know or let them know. I have no money for this so I need someone who might be willing to donate their time and resources or at least wait for payment. I know it's a long shot but I've felt like I needed to do this for so long that I better at least start asking for help.
So there it is. If you don't know anyone can you maybe tuck it away into the back of your mind just in case someday you run into someone who might be able to help? Thanks.
It's amazing what taking a few minutes to distance yourself from a situation can do for your spirit. As I typed this Colby gradually settled down and went to sleep. Yes I just gave him 7different medications. He most certainly did not fall asleep on his own. That would be more than a miracle in my world. Any one of those medications would knock me out for over 24 hours. I will be lucky if I get 5 before he wakes up again at midnight. Then we will be up every 2 hours after that for a half an hour each time. The familiarness of my routine is sometimes a little to familiar.
I am calm now. I don't feel so lonely. I am in control and in charge again. Just knowing that I have friends out there who are my support network even just by reading this has lifted me up again. Now I just hope I have the strength to go battle a two year old into bed. Wish me luck!
*I wish I knew who to give credit to the picture above. It is beautiful and struck a chord in my heart when I saw it. I wish I could make it bigger also but that's how it has to be I guess.