March 23, 2011

Update 3/22/2011: the beginning of a new chapter

So much has happened since Grant's official diagnosis of Fragile X Syndrome. The pronouncement of the syndrome was the end of a long journey and the beginning of an even longer one. The past couple weeks have been full of doctors appointments, phone calls to make more appointments, endless paperwork, and many tears. Our daily routines are the same but the new reality - the diagnosis - casts a revealing light on each situation/symptom. At times it is empowering. Other times it is crippling.

I wish I could say that I have remained strong and unfaltering through this bumpy road but I cannot. I have had some rough days. I have cried myself to sleep, begged God for answers, and questioned His plans.

Oh Lord why? What an awful, devastating disease! Why Grant?!? Why me? Why anyone? Who am I to be spared from such pain when others experience the same and even greater pain? Lord, please come soon!

I have also seen God's mighty, loving, and faithful hand work through the body of Christ. I am learning to lay my fears and weaknesses before the throne and, in turn, I am being robed in peace.

Next week will be jam-packed with appointments. Since my parents will be in town visiting from Minnesota, I am trying to cross a lot off of a long to-do list. Please pray that all of the following appointments will go smoothly.

Monday: Physical therapy and Grant's IFSP (Individual Family Support Plan) review with his CDSA service coordinator and all his therapists. During this meeting we will also begin the paperwork and transition process with a CMS representative to enroll Grant into a special needs preschool program.

Tuesday: Speech therapy and spending time at the SSA to obtain approval for financial assistance to help pay for additional therapy. Also, Wesley's 12-month wellness check-up and immunization shots - finally!

Wednesday: Grant's out-patient surgery (he's getting his frenulum clipped and getting tubes put back into his ears) and Wesley's blood work at the Levine Children's Specialty Center for Fragile X testing. (Please pray that not only will Wesley not have the full mutation of Fragile X but also that he will not have the premutated form of the syndrome.)

Thursday: Occupational therapy. I am also trying to get Grant's hospitalized sleep EEG scheduled for that day but am thinking it may have to wait a couple more weeks.

Friday: Occupational therapy and enjoying my parents' company!  :)

I am working feverishly to get an appointment for Grant to be evaluated by Charlotte TEACCH (for autism) and an appointment with the Duke Fragile X Clinic (an intense two-day appointment full of various testing, observations and counseling). He has been entered into the Fragile X registry and I am praying that Grant will be eligible for a clinical study soon.

With all that has been going on I have been very slow to return e-mails, phone calls, and text messages. I am so sorry. It weighs heavily on me that I do not have the time to respond as quickly as I would like. Please know that it is not intentional. I want you to know that I appreciate all the encouragement and very helpful advice - keep it coming! Please, please, please keep praying. We need it. Aaron and I sometimes struggle to verbally share how we are doing but we are eager to share how God is working in our lives through YOU! We have been blessed by so many. Thank you.

I'll close with a poem I read a couple weeks ago in Streams in the Desert during my quiet time with God (March 7th):

Why must I weep when others sing?
   To test the deeps of suffering.
Why must I work while others rest?
   To spend my strength at God's request.
Why must I lose while others gain?
   To understand defeat's sharp pain.
Why must this lot of life be mine when that which fairer seems is thine?
   Because God knows what plans for me will blossom in eternity.


  1. Thank you for sharing where you are and how you're feeling. Helps us to know how to best pray for you guys. How's Grant doing with all of this activity?

  2. Karen, thank you for sharing. You know this, but God is still God and God is good. Love to you.


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