I started with Boo Hoo because look at those faces? It’s hard to want to write about the stuff that is hard. Boo Hoo Poor Me. I don’t like to be a whiner. And I know I am sometimes. I have so much to be grateful for that I get really annoyed at myself for feeling depressed and discouraged. Boo Hoo. I have been reading THIS TALK over and over for the last few months because its SO good, and it really is helping me to “look forward with faith” right now. I WANT to feel grateful IN my circumstances, but it’s not always easy getting to that point.
This summer has been really hard emotionally, which is kind of strange because there have been summers that were much more demanding medically and physically with my little boys. But this is the first summer that Ty has cared that he had a trach, the first summer that I have these two CUTE, FUN, BUSY little boys that are able to do a lot but it has been HOT this summer and they cant swim. They cant be submerged AT ALL because the place where their trachs enter their necks are basically an open hole to their lungs which would fill up immediately if they fell in the water. I have taken them around pools in the past but they weren’t active enough to want to get in.
Last week I was visiting my sisters and we went to a pool and Sarah held onto both of Ty’s hands, I held both of Ben’s and we waded with them in the baby pool but Ty started getting wild- jumping around, twisting to get out of my sisters grip and he about gave me a heart attack. He just started crying “I hate having trach-ses” and cried all the way home because he couldn’t swim. But then like usual he moved on to the next thing while I still felt bad for him about it. And I felt bad for myself too. (Here comes the “Boo Hoo” part.) Why does every thing have to be so hard. Couldn’t I just sit with my sister and watch my kids play in the little shallow pool? Couldn’t we go ANYWHERE with out me needed to be on high alert? I tried reminding myself that even with my older kids it wasn’t easy when they were learning to swim and had their floaties, but it wasn’t so life and death either. So now they just play in the inch of water I put in the kiddy pool which they love but I guess I just feel a little isolated. Boo Hoo
And of course its not just the swimming. It’s adjusting to the fact that their trachs are not going to be taken out anytime soon. As they get older its me adjusting to what that means.
Jonathan just got back from his second week long trip this summer with the scouts. He has been Scout Master for 8 years now and he LOVES it. I completely support it, I would not want him to quit, he loves it so much and I truly love that he is there with Scott.
But for some reason I managed fine while he was gone but once he got home I just kind of melted down. Both times. And I was MAD. Just MAD. Maybe just from the stress of being alone but sometimes I wonder “Why does it seem like I am the only one who has handicap kids??” His life activities don’t seem to have been that altered since Ben was born (except of course that’s not completely true) but mine have drastically changed these last 7 years. I wouldnt give up being the #1 caretaker for my littles but I really miss doing more as a complete family. I love my bigs too. See what I mean? Boo Hoo Poor Me. So annoying.
As I type this I want to go back and DELETE DELETE DELETE because look at them, how can I complain? I am SO in love with these boys- they bring so much joy to my life.
Right before I took this picture here is what I heard as they played action figures together:
Ty’s Spiderman “Are you ready to go kick some butt?”
Ben’s Spiderman “Yes! But first I need a hug”
I hate to be complaining about anything aspect of my life with them because I know it is a miracle(s) they are here with us. But the reason I write these posts is for me- I don’t know how many times people have said to me “You are a saint, I couldn’t have handled what you have to.” Well guess what? I don’t think I always handle it well at all. I don’t feel like a saint because what I see are all my weaknesses brought right up to the surface. Whenever some one says “You are so patient and so etc etc” I think of course its easy to be patient with THEM- they are wonderful and perfect in their own way. But I worry, worry, worry. (Showing my lack of faith!) There are a lot of times that this is my normal- and life doesn’t seem overwhelming, but there are also a lot of times I just feel like a wreck. To those who think I am always holding it together, the facade it working!
So what’s the point? I wasn’t going to write all this but I think I just want to remember what life is really like, and I am not ashamed that its just hard for me sometimes. But more importantly I want to remember the good things- yesterday I was driving to an early morning appmt. and because I was alone I didn’t have “Frozen” blasting and I wasn’t playing “eye spy,” I just had time to think. And I had this overwhelming feeling of thankfulness come over me. I know it was a little gift from Heavenly Father. This week I have been dreading a procedure Ben and Ty have to have, nothing major but they are going in tomorrow morning and have to be put under to have a scope. I HATE that putting my little boys under anesthesia is part of their life. I HATE HATE the moment where they take them away from us and walk back behind the doors to start trying to get the IV in. I am grateful for the fact that medical intervention has saved their lives in the past (more than once) but I still hate it. (No my kids are not reading this because I tell them they should say “I haven’t learned to like it” instead of hate. Guess I need to practice what I preach!) So tonight I am trying to just keep thinking about how every time I try to be more grateful in every circumstance I am looking forward with faith. Ok- the venting is over- for now……. My only disclaimer is that my last post was more positive. 😉