Today was yet another stressful day but at the same time much easier than the last few. The overwhelming support I have from people is astounding and I am very blessed. Last night was amazing for just that reason, I had messages from God sent my way through some of my greatest friends as well as some new. Got to love how God works through people......
Well anyways, Jacob has a "splint" (home invented really) to keep him from twisting. His trunk and hips need to stay aligned in order for the stitches holding the GJ tube to stay in place. We have already lost one stitch and there are only three. I swear we protect those stitches with our lives. Basically imagine a backboard that the paramedics use, it is a little more bendable than that but that is the general idea. It's not meant for free movement. Now here is where that saying "tough love" comes into play. He's had this splint type barricade since last thursday which limits him quite a lot. For example, he cannot be in his motorized wheelchair with this large obnoxious thing and his high chair won't fit it either. He also really shouldn't be scraping against the floor crawling which leaves two options; his specially made stroller and his bed.
How awful for a four year old who just wants to play right? I've been home from college since Friday evening and I watch him bored as ever, in front of the TV because he can't move anywhere. Well, I won't say at all but he's pretty restricted....doctors orders and you know you don't go against those. So all in all, he's really a one-to-one, we play with him in bed or in his stroller to try and make this a little more bearable. It truly breaks my heart watching him just sit there. He knows nobody is going to get him up which is why singing "Jingle Bells" and "We Wish You a Merry Christmas" 40+ times was the highlight of my day. Jacob has one of those musical books you know where you push the button and a song comes on. He's memorized which button plays which song so he kept switching back between the two songs and I just kept singing them over and over again. That's the most I've seen him smile and laugh in the few days I've been here. Just thinking about it now brings me utter joy and peace. That smile, a smile of a true fighter is what will help me through this all. If he's going to smile and be in a world of play then I will absolutely do the same, for him.
That being said though, I can't really say I'm completely relaxed so to speak. I mean aside from seeing my ex boyfriend calling another girl beautiful.....oh wait that's not important is it?...... No but I wish it didn't bother me.
More importantly, my mother keeps talking about the future as if Jacob will be in the hospital for months. The conversations usually ends with "If he is in the hospital then..." That definitely worries me, I mean I'm a true worrier at heart but I don't think we should even think about it unless there's a 99% chance it will happen. Ugh this makes my stomach turn inside out just thinking about it. I just can't ever forget that God is here with us always. He's watching over Jacob and keeping my family together to give Jacob the best care possible. Which reminds me, we're having another problem with nursing care. Big shocker there! I cannot go into details about that though, that's confidential from a legal standpoint.
At this very moment, I'm feeling extremely uneasy; that's never a good sign. I'd like to blame it on this ex boyfriend deal but I know that's not it. I guess all I can say to that is I'll deal with whatever obstacle lies ahead for my family. I know we are never alone and if God gives me the gift of knowing ahead of time then he will for sure carry us all through it. That is something that I've been able to detect since I was young. I always know when something "evil" is coming our way. No, Jacob's condition isn't evil but the fear it causes us and the lack of trust we have in God is. I think with all considered, it's time I go listen to Sanctus Real and Leeland. I find "Pray" to be one of my favorites and also one of the most strengthening for me.
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