I want to first thank everyone for the encouraging comments and also all of the holiday wishes!
And also a huge thank you to everyone who sent gifts to us! You guys are amazing.
I hope every one had a great Christmas.
This Christmas was a hard one for us- as I knew it would be. When I think of what Tripp "should be" doing at 2 1/2 years old, it makes me really sad to think about all that he is missing out on. Santa Claus, opening presents, baking cookies, etc... We've never even come close to that. BUT, he is surely surrounded by LOVE, and I think that is what's most important.
This Christmas was pretty low-key for us. On Saturday (Christmas Eve), my parents went to my family's house in Lutcher, and Stephen spent the day here with Tripp and me. Then that night, my mom kept Tripp so we could visit with some of my family here. Then, me, Stephen, my brother and his girlfriend Ashley all went to midnight mass. On Sunday, Tripp's MeMe and PawPaw Carey came to visit and exchange gifts for a couple hours. And then finally, Christmas night was when Tripp was alert enough for me to open his presents for him (it was bath day, so he had sedatives in him). I could have just wrapped about 10 empty boxes, because the only part he liked was the noise when I tore open the paper. He wasn't interested in any toys I bought (which I expected... he hasn't been in to ANYthing lately). He did however, play for a few minutes with one new little music maker.
And when I say "a few minutes," that's even pushing it. Playtime has pretty much been non-existent (even on the rocker) and he hasn't stood up in about 3 months.
Bubba's days have been about the same, give or take some really bad ones. His bottom is really raw right now, so even diaper changes are dreaded and he needs extra pain and anxiety medicine for each change. And it takes him a while to settle down after they are finished.
Though he is struggling with pain and I'm trying to find the right pain regimen (which is nearly impossible when he can't speak or communicate about how the meds work or make him feel and also the fact that we have no idea how his body is metabolizing it), he is also struggling with anxiety. I think he's always "on the edge" and sort of always "expecting" that we are going to do something to him. He anticipates diaper changes and trach changes at night, so he cries and switches between me and my mom in the rocker almost every 2 minutes at night. We talk to him constantly, explaining when it's "time" and "not time" for diaper change. But I think the trust factor is gone and he doesn't trust that we mean what we say. It's horrible and sad, but I have to change him... I'm not sure how to go about fixing this anxiety issue when changing him has to be done.
I've been doing his baths earlier in the day. I try to have everything set up before he wakes up in the morning, that way I can give him his sedatives while he's still asleep and he doesn't have to wake up and be anxious all day. We just get it over with. I was waiting until late in the evenings before because I had to give him the sedatives, and I didn't want him to sleep all day after bath. But at this point, when he's just miserable all day anyway, I figured the sooner the better where he could relax for the rest of the day knowing it was over (until night time of course, when he gets anxious again). The sedatives don't even really put him out anymore anyway, they just work as an anti-anxiety for him- even at high doses. Sometimes I think my baby is super-human;)
So still, our days consist of being in the rocking chair and rocking all. day. long. Thank God I don't get "rocker-sick," because I get car sick, plane sick, boat sick, etc. ;)
What gets me through each and every day is that one line from the poem "The Brave Little Soul" that I posted previously: "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength." I have to trust that God is with him and that He is helping him bear this tremendous amount of pain, because I don't know how any child could possibly be this strong all alone. I talk with him every night... about God, about heaven, and about how Mommy will be okay (one day) if he is too tired and ready to go home to heaven.
But this kid is a fighter. Sometimes I just wish he wasn't so strong. My heart is aching for him to have some peace, however that my be.
I'm so grateful for all of the people in my life. This past year has been life-changing for me in MANY ways. I have made some A-mazing friends- friends that will last a lifetime. Friends that have been there for me through every hardship- even from a distance. These people have gotten me through the hardest time of my life. And for them, I am forever grateful.
I am also blessed to have an amazing guy in my life. I thank God every night for sending me someone who loves me and loves my son enough to face our situation head on. I am grateful that Tripp finally has a man-figure as an active part in his life (other than his Papa and PawPaw Carey). It was a scary feeling going through a bad divorce and wondering who in the world would ever want to take on a woman (a stressed out woman, might I add) who never leaves the house... but also her sick child who requires her attention 24/7? I've known Stephen since kindergarden- we went to school together until high school. But there's something about being a little older and a little wiser... it isn't until then that you know exactly what you want (especially the second time around). He came into our lives and has been exactly what I have needed. I could not have made it through this past year without him. I couldn't ask for anything more. He is wonderful, his family is wonderful, and I finally know what being happy feels like.
And guess who is in town this week...??
My sister and her husband!
We didn't get to see them for Christmas, so we are so excited to get to spend the week with them. We will do our family Christmas tonight, opening presents together and I'm sure eating a whole lot:)
They don't leave until Tuesday morning... and I'm never successful in getting them to stay longer, so I guess I'll just enjoy the days that we have!
I hope you all have a great weekend!
Thank you, as always, for the continued prayers for peace... in any form.