I hesitated posting this so soon for many reasons but as you will soon understand I can't take the time to update everyone individually. Thank you all for your constant prayers, you have given my family and I extra time with Jacob. As I've mentioned, my brother's gastric secretions are leaking through. His surgery didn't work. When he was in surgery they found scar tissue and granulations inside which means the gastric secretions are eating away his insides. I've kept the hope for so long but I've been beaten down. My loving brother; my world; my hero; one of my greatest blessings; he's not doing well.
If you think I typed that without crying you're dead wrong. I'm working on it though, I need to move on beyond the tears and be there for him. I may not get there tomorrow or the day after, but mom assures me it will happen. She says I'm already "clawing my way out" whatever that's supposed to mean. The point is, that this is not about me or anyone else. This is solely about Jacob. The main focus is making the most of the time he has remaining. There's a thing him and I do and it's called green hands...you say "hand" (hold your hand up), say "green hands" (hold both your hands up), and then yell "yayyyyy!" He goes absolutely ballistic with laughter! It's so dumb and my family makes fun of me for it but I will do it 6 million more times if it makes him smile.There are so many random, special things we all do to make him laugh and they have all become very significant. Significant in that they are taking on a different meaning. I'm not quite sure how to explain it.
In addition, he's not been one to enjoy being held and it's all he wants now. My family is to the point where his happiness and showing him he's loved are the most important elements in his life. We aren't going to stress about his site and what we cannot change. We know the final outcome; we don't have to know the reason or even understand it; we just need to make the best of what we have. So, we're taking a family vacation to Disney this summer....Jacob absolutely adores Mickey Mouse. He's never been on a plane before and I'm so excited for him! We are going to give this child the absolute best time we can.
For the past two weeks it seems as if every movie on TV has been about a young boy who has a terminal illness and his family is coping with knowing they are going to lose him. No joke. Literally every time I go to watch something it's about coping with the loss of a child. Then when Pandora starts playing nothing but songs about finding strength in God after loss...I'm putting the pieces together now and coming back to reality. I've been in fantasy land thinking my brother was going to survive this. Every day counts, even today, and you know why? He has a respiratory infection right now. I had a very stressful day yesterday working with my dad to keep him stabilized. His oxygen saturation wasn't holding and his heart rate was anywhere from 150-170 which is really not good. Today his heart rate isn't much better. He's on an antibiotic and it's not working. But we are all done fighting. We are losing this child and there's not a damn thing we can do about it. With that said, I've asked for you to pray for his life but now I'm asking if you could please pray hat God can give him peace with the time he has left on Earth. I can't even begin to imagine what having your insides burned by gastric secretions must feel like. Think about what heartburn feels like and multiply that by thousands. It's evident he's in a lot of pain.
I'm sick to my stomach; I haven't any idea how to cope with this. I try so hard no to cry when looking at Jacob but it is indeed a great challenge. If you've been following my posts you know that I had hope. I put my trust in God and I was very optimistic. I wasn't going to let this weigh me down. I've told all of you to trust God and keep hope in your heart... try your very best. I'm trying so hard to accept God will make this okay for everyone. Right now, there is not a single Christian song or bible verse that is going to make this okay. So for all of you, God loves you. He's there for you. He's here for my family too but we are not to the point where we can reach out to him yet. I have not told you how this whole issue came to be. Some day, I will tell you how Jacob's site became so severe. Then you will understand why I'm questioning God. It was a pure act of evil that did this. That's all I can say. So as a last, heart felt request, live your life in the moment. Thrive where you are now and love the most you can. I care about everyone reading this even though I may not know you, your life is extremely precious and you're a son/daughter of God.
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