We still don't have any word on any results. I have 5 appointments already made with Braedon's specialists this next week and two more to make Monday. I am trying SO. HARD. to be patient....today was a very hard day.
Braedon didn't sleep much last night, he didn't throw up but was very restless and screaming out in pain before calming down and falling back to sleep several times. His diapers are getting worse again, they most often look "radio-active green", I swear they could glow in the dark. He is getting more restless and discruntled during the days and sleeping restlessly during his naps.
I am so tired and so drained. I had a followup appointment with my primary yesterday and the receptionist, a wonderful woman and new mom, noticed I "looked exhausted". My primary asked how things were going, she called me two days before Braedon ended up in the hospital. I recounted everything quickly and she kept telling me how strong I am. I don't feel strong. I am struggling.
I am struggling with how to be strong for my kids. I am struggling with how to care for Braedon and cherish every minute while in the forefront of my mind I am constantly aware of what lies ahead of us if we receive positive results for some of these disorders. It is tearing me apart to know the prognosis is not good, that some doctors only give life expectancies of a few years to a max of living until age 30ish....that is NOT acceptable.
I am struggling to find peace in this and know God is in this no matter what. I fear losing my children; a mother's deepest fears I think. I am struggling with how to resist looking at anything else on the internet and journals until we hear from doctors. I am struggling with how to set Braedon aside and give Caileigh the time she deserves to have and needs badly. I struggle with the thought of missing any part of Braedon, with the thought of missing any part of Caileigh.
I need peace. I need answers and for them to be ok and for God to give Braedon the miraculous healing he needs because I am so tired and am finally realizing I have to give up all control to God. I have realized this week there is absolutely nothing I can do. It's almost as if God has given me several chances over the last 29 years to give it all up and I have never been able to do it; the circumstances have never been great enough. Well, now they are. I HAVE to give it all up to Him. I NEED to give it all up to Him. That honestly scares the crap out of me!
My sister flew into town for the week to be with me and the kids, and to help me with Caileigh. She was amazing! I miss her so much; she is my best friend. She and I had a chance to sit here and talk today while Caileigh was in school. It was so good, so healthy. I cried a lot, so did she. We have made a "To-Do" list of things I need to do in steps to help myself move forward. There are things for my marriage, for me personally to grow and become the person I used to be, things to help me as a mom and things for me to do to be able to give it all up to God and rely on Him the way I expect to be able to do with Soapy.
SHe said something that really stood out to me. I am looking to my husband to support me, encourage me, fill me and comfort me in a way that is totally impossible. It is just a very unrealistic expectation. She told me that God needs to be able to fill those needs for me and He will if I let Him. She related it to a first romance, you know, the kind you have in high school. The kind where anything is possible, the person is the most perfect guy you've ever met. They do everything right, you will be together forever, blah blah blah. :) Well, she said that is a glimpse at the kind of love relationship we are to have with God. Once that first love ends, we are hurt and our perception of love changes forever. Most women put such high expectaions on their husbands and it leads to such problems later in their marriage. Their husbands feel defeated and overwhelmed and unsuccessful at being the perfect husband. The women wonder how they could have married someone so wrong for them who doesn't fill their every need.
Husbands are not supposed to be able to fill those needs. My sister said, about her own marriage, that there are things she always imagined having in her marriage, that her husband would do for her that he will never do; she will never get them. That's ok, he's not supposed to. God gives you just enough love on earth to keep you wanting more in Heaven. He has given us a companion to live life with that we can love but not whole heartedly. If we loved them whole heartedly and they fit every pre-requesete we had, we wouldn't need God in our lives. God is to fill the voids of our life, of our marriage. He is to be our true love.
This is the peace I am dwelling on tonight and reminding myself as many times as it takes to keep myself looking forward and positive and committed to caring for my children and finding my son the best care possible. GOD is going to take care of us and of Braedon. I am praying if these results come back positive that He gives a miraculous healing because that is what it's going to take. I am praying if they come back negative that He gives a miraculous healing and totally baffles the doctors. Either way, I am praying...praying...praying.
Please be praying with me.