Tuesday, August 30, 2011

MRI Results

We got the results for Jacobs MRI about a week ago.  I have been meaning to blog it, but honestly I have been so busy and so worn out emotionally.  The neurologist called me and told me that everything looked normal except that Jacob's brain was 2mm below his skull.  I don't know what that means, but she said they don't do anything about it until it is 5mm or more.  We have another neurologist appointment tomorrow so maybe she will explain then.  The insurance company hasn't decided if they will cover the blood tests or genetic tests yet so we are waiting for that.  Those tests will determine metabolic diseases, encephalitis, fragile x, ect.  The neurologist told me that its very normal for autistic children to have rapid head growth in the first year of life.  Since she told me that I have researched and read at least 10 journal articles about the positive correlation in head growth between 2 months of age and 12 months and the severity of their autism.  Obviously, this is not good news.  I don't know if I have ever cried so hard then when I was reading all of that.  His head went from the 25th percentile to the 98th in a few months.  I don't want him to be severely autistic.  I just want a normal healthy baby.  Meanwhile, all his ECI therapists and the consultants from Houston ABA and his doctors have been telling me that he needs to be in intensive therapy asap.  His brain is still very mallible until the age of 3 so intense therapy can actually make him almost mainstream by then.   So Cret has been feeling so stressed about money because we don't have the money for even a little bit of ABA therapy and I have just been so sad.  I feel like screaming "SOMEONE HELP MY BABY PLEASE!!!!" Why can't I get him the help he needs?  I feel so helpless.

Its been a while since I have blogged.  I have been having such a hard time lately with so many areas in my life.  First of all how do I call the people that I can talk to about this now that the "newly diagnosed' stage is over.  What do I say to them?  "Hi I'm still sad.  Jacob still has autism.  I think about it everyday and I can't really do anything?"  Additionally, some people aren't reacting the way I expected and aren't being supportive like I had wanted.  I started feeling resentful about it.  I started feeling so alone.  I was expecting people to react the way I would, or the way I thought was "right".  It was making me judgemental, resentful, and so sad.  Its funny how when I started going through all this I started thinking people should focus on me. I was hoping for all this extra support from people close to me, meanwhile not thinking about what they may be going through or dealing with.  I was just being selfish.  I have come to realize that I need to be thinking about the kind of person God wants me to be.  I need to let God use me in my relationships.  I am Gods child first, then a wife, then a mother, then a family member, ect.  I need to turn my focus back to Christ.  Moreso, I need to forgive.  I need to let it go.  I can see that God is trying to show me that HE is all I need.  He is my portion.  If I had thousands of people to turn to every single day with every issue right now would I be turning to my heavenly father?  Its funny how when we go through a crisis we become so selfish.  All of a sudden my prayers are filled with pleas instead of praises, my desires are for my husband and my family and my friends to fill my needs.  Its so hard, but I have to figure out a way to stay focused on my 1st priority...Jesus....not me, not Jacob.  So that's my prayer this week.  I am really feeling so weak and so tired and so sad. 

I need you, God.  I have never needed you like I need you now.  I feel so lost and so desperate.  My baby needs help and we can't help him.  Please help me to focus on You.  You are so awesome.  Blessed be Your name!

I read a book called Help For the Caregiver  by Michael R. Emlet and it was so awesome I just had to share the 3 amazing parts that touched me so deeply....
                       "The gospel is about renewing the true image of God through Jesus (Ephesians 4:24, Colossians 3:10).  This process is not derailed by illness and disabililty.  Instead, God uses these things to make us more like him.  God promises he will complete the work he began in each of us (Phil 1:6).  This means that God is doing his transforming work in the person you are caring for and also transforming you as you face the challenges of caregiving.  He is perfecting the character of Christ in both of you in the midst of your struggles."
                      "The concentration camp survivor Victor Frankl said,"When we are no longer able to change a situation, we are challenged to change ourselves."  You may not be able to change the chronic, life-altering aspects of your loved one's physical or mental struggle, but you can be sure that God is intent on transforming you more fully into the character of Christ as you care for your loved one."
                       "Providing holistic care to someone whose chronic illness you cannot fix is both difficult and redemptive at the same time.  Let Paul's words encourage you today:  "Therefore, my dear brothers, stand firm.  Let nothing move you.  Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain" (1 Corinthians 15:58).  God has entrusted you with a unique opportunity to  minister the gospel of Jesus Christ in both word and deed.  Although you may sometime feel that no one knows what you are going through, God sees you.  He knows all about your struggles and sacrifices and he is with you, ready to help you in your time of need."

God is with us.  I re-read this and I think of the special moms God has put in my life that are going through similar situations and I pray for peace and for God to show you and me that this is a ministry.  Our precious babies have these illnesses for a reason that we may never understand, but let us be strong today and every day in our faith and continue to praise God.  I know its hard.  Sometimes I feel like this is not real.  I seriously just wonder how can this be happening.  Surely Jacob is going to be fine or surely our house will magically sell tomorrow so I can get my precious baby help, but it doesn't and he's not and I need to be content.  I need to trust God.  Trust and faith.

1 comment:

  1. this was a beautifully honest post. praying for all of you through this allison.