There's nothing wrong with him. . .

Such a double edged sword!  But really to look at him you would think nothing was wrong with him.  He looks healthy enough and he is running around and doesn't seem to have many issues accomplishing what he has set out to do as most toddlers.  As a mother, I would have to agree and when people speak those words to me I take it as a compliment.  I know they are saying it because they really don't see it and to make me feel better because it is usually followed by "he will be fine."  I am usually the one passing around the uplifting comments and encouraging others in a positive light, so I understand the source.  Don't stop saying it but the reality of it is that we don't know.   These may be the best years of his life. As a mother, I may never accept this for my son so don't ask me too.    

What? These may be the best years of his life.  Yes, the reality of it is that Klippel Feil is a crippling, debilitating degenerative disease.   Most individuals with KFS who have severe issues and additional complications typically begin having major issues in their 20s and it goes down hill from there.  I am still getting congratulations from people about his MRI, but there again it is bittersweet.  Thomas has type 3 of KFS, which of course is the most debilitating and has the potential of causing the most complications.  He also has a list of anomalies that are associated with KFS which puts him in a higher category.  Klippel Feil is more than a bone disorder, it requires total care of his body and a team of doctors.  We will need to watch his nervous system, lungs, heart, and kidneys.  He should be considered the same as if he is suffering from a spinal cord injury when it comes to his care.  We can keep a positive and optimistic outlook best we can, but the reality is these all great possibilities in his case.  So, I will do my best to find the best for him and any preventive medical care for him.  This is my new reality and this has made me raw as a mother.  If you see me, please know I am fragile right now.  I am like an old ragged sweater with a tattered piece dangling from the end. . . at any moment someone could pull it and I would completely come undone.

Where does my faith stand?  Good question, and I am glad you asked.  Its right here where its always been.  Planted firmally at my feet.  God didn't give these problems to Thomas, yet he has them.  God gave Thomas to us and for that I am grateful because I would never want to miss his smile or giggle.  God will ultimately take care of Thomas and for all us and God is good.  I firmly believe God gave me Thomas because he knew I would fight for him, he knew I would take up this challenge with my whole heart and passion.  God makes no mistakes.  God knew I had family, friends and a church who would walk with me and stand beside me.  My prayer to God now is to help me provide financially.  We have already spent about $6,500 in medical expenses on Thomas since his birth and that was just in the discovery and diagnosis.  I was floored at the number myself, because I have just done what I had to do for him and figured we would pay it off when things settled down.  Please know I am not whining or complaining and I am extremely thankful for our insurance company and the amount that they do pay for.  I am also thankful that at this time my son is not suffering nor is he fighting a life threatening illness.  But I know now, that things will never settle down.  We have more monitoring and therapies that he needs to help him have the best chance possible and I honestly don't know where that kind of money is going to come from.  So, I am planning and working to find the best for Thomas and will continue to pray that God will provide.  I am being proactive in trying to find any kind of assistance or services that can be offered to children like Thomas.  God wants me to be proactive!

I myself have not been doing a good job of taking care of myself and have attempted to deal with this information on my own.  Let's just say that didn't work.  I have started trying to talk more to others around me and share this unnerving news with them.  I want to protect others from this awful news and not bust their bubble.  I am planning on getting back to the gym, eating better, seeing my therapist and going to see my physician for a check up and maybe a little help.  I seem to be developing an ulcer again which I haven't experienced since my freshman year of college.  Good Times!  The journey will be long and hard and we are only at the beginning and Thomas is going to need me.  My whole family needs me!  So, I need to be as strong as I can spiritually, physically, emotionally and mentally. 

The good news is even when I am not taking care of myself, God is sending his angels to help take care of me.  I was surprised last week with this tender note with a gift card.  It really meant a lot to me that someone would think if me that way, but there again its God.  God never fails you!!

 

Tonight, I ask for you to keep praying.  Its okay to pray for a miracle!!  Its okay if our prayers feel unanswered.  But never stop!!  I will grieve, I scream, I will cry, I will laugh, but most of all I will pray.  I will never stop praying!

Isiah 58:11 The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail.