Reaching Out and Reaching In

So, I said that in time my blog would show itself and its purpose.  I believe that purpose is being shown to me.  I have been contacted by many people through my blog sending love, prayers and support in many ways.  I have also had people reaching out and offering advice and help, especially when I write such as I did in my last post where my frustrations just stream through my words.  Its real and cannot be hidden. 

UPDATE: A quick update, I do have people working to try and find a way to get my son's blood drawn even the geneticists office themselves.  I pretty much cut and paste my post to their office, they were extremely sorry.  In fact there response began with the following:

"Dang, I wish the Senators or House Reps would experience what you are going through. I bet they would make changes."

I also have a friend of mine who happens to be an attorney, married to an attorney, who works with other professors/attorneys who is helping me write my appeal to the insurance company in an effort to get some benefits for the doctor and recoup some of my expense and cover future appointments.  Whew! Prayers will be accepted in this area for sure!!

What has also been touching especially this week is I have been personally contacted by two different mothers who are walking the same walk as I am with Thomas.  Its such a fine balance between a comfort in finding someone else who understands what you are going through and a heaviness in your heart that someone else is going through the same thing as you.  To hear her words through her email just made me so sad for her and her having to comprehend that her little boy is going to be different and is going to have difficult and unusual challenges his whole life.  She experienced some of the same things I did, "When I researched KFS and joined their Facebook page, I suddenly got all the adults perspectives. That's when I lost it. I'm not only worried about how we will afford our repeated trips to Boston but I worry about how our son will afford to deal with his condition when he's all grown up and out on his own. Yikes."  Its all true!  Its one thing to learn about the physical aspect of what this syndrome means but when you talk to others who are living with it your heart breaks for them and for the thoughts of what could be with your own child.  My prayer is that it will be different for the new generation coming up with this debilitating condition.  That the medical field has come a long way and continues to improve and we caught it early and he will have a better shot.  All of our little ones will!!  

The other mom described pouring over my blog for hours and reading the details as she is on the cusp of trying to determine what may be going on with her little cutie.  He is almost five months old and neck fusion has been brought up as a possibility, plus he has had some other issues including constant ear infections.  Currently, she is waiting for x-ray results now.  What a wretched place to be!  I hate waiting. . . I have to admit I am not very good at it.  Although my house gets cleaned as I have to do something with myself.  I felt so blessed that she was able to reach out to me and share her story.  I don't have all the answers, but I am happy to share what I have learned and what I do know especially if it can help another mother.  I am praying for both of these moms and their precious children. 

Write me anytime!  I am here and will write you back when I have a quiet moment.  I love to hear from others and even though it saddens me to hear of others who are going through this and similar situations, it does bring us closer together as a community all serving the same purpose.  We can share our experiences, doctors, tips and just love one another in support and prayer.  Life is full of challenges and this is our challenge and we will rise above it!  My advice is to realize its not a race its a journey and while on this journey you need to enjoy your child and have moments to pause and experience your present life.  Its difficult when you are constantly seeing doctors, therapy sessions, wondering if he should be doing this or that or doing it wrong, what should I be doing, am I doing this wrong. . . . on and on.  But my sweet baby is growing a little everyday and I don't want to miss a thing.  I am learning to balance the best that I can and some days are still better than others.

Philippians 4:5-7

New International Version (NIV)

⁵ Let your gentleness be evident to all. The Lord is near. ⁶ Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.