Monday, April 29, 2013


It is the feeling of being completely out of control.  Admittedly, I am a control freak of the worst kind.  When that control is at its peak, I am a very difficult person to be around.  I don't like me.  Literally, I'm crazed.  I'm aware of my behavior but unable to change it.   I turn inward rather than seek support from family and friends that repeatedly offer themselves as a place of trust where I can be vulnerable.  I don't want to be a burden.

Sometime in late January, in between the painful results of Little Philip's latest MRI and the even more painful wait for the PET scan that ruled out cancer, a dear college friend called me to offer encouragement and prayer.  In her soft and loving voice, so very different than my own, she grieved with me over the realization that Philip was not mine.

Philip is not my child.  

Philip is a child of God, entrusted to me to love him unconditionally, to help him navigate life through this broken world.   Did I truly believe this?  Admitting this meant the ultimate surrender of control to a mother's heart.

I was still seeking control over my child's life, his future, all that his NF1 diagnosis may mean for his future.  I would verbally spout the correct things a confident Christian should say.  I pictured myself giving a testimony to be encouraging to other mothers facing a life threatening diagnosis in their children.   Literally I stood in front of a mirror like I was some sort of brunette Beth Moore.  Practicing this speech helped me to keep from losing it or crying when asked how things were going by friends.  Practicing helped me to become less emotional, more practical.   How's that for control.   I'm good at that, deflecting anything and anyone that seeks to expose my true weakness.

I felt such guilt and shame for my past and how I was so quick to judge a fall from faith in others that faced life's trials.  Marriages in shambles.  Infidelity.  Addiction.  Terrifying medical diagnoses.  Loss of jobs.  Loss of income.  

If they were truly Christians, if they truly practiced their faith then they would weather this storm better...if I were them then I would....

I am not able to weather this storm alone anymore.  I have never been in control of my own life let alone the lives of my children.  And despite my best efforts, I have failed in controlling the life of my husband.  This realization is a good thing.

I have weathered some serious personal storms in the last few years and they crushed my spirit and hope.  I spent a long time in the dark, truly believing that God was punishing me, that this was some kind of atonement.  Never having thought much of the how the Holy Spirit worked in my life, I felt the presence of the Spirit, a gift from my heavenly Father, hope and encouragement, courage and wisdom to make it through another day.  So often I would shut the door from my children and husband, fall on my knees in desperation, weeping uncontrollably, completely broken.  I found myself praying the prayers found in Lamentations (how long Lord, must we wait?  Do not forsake me, Lord).  

And in time, I began to trust in God's timing again, letting go of the false belief that I ever had control over any of this.  And when I did, hope returned.  Glimmers of joy returned.  And light is now returning in my heart and spirit.  I thank God that He chose me to shepherd the hearts of my precious children.  I am given the privilege of sharing the gift of hope and encouragement with them.   I am given the precious gift of celebrating how God is working in each of our lives.  When Little Philip cries out in fear and anger about having to have MRIs for the rest of his life, I am there to grieve with him but offer encouragement and hope, to pray with him.  His sweet spirit is so strong.  Helen is so young and oblivious to her NF1 diagnosis.  There are no signs or symptoms other than the knowledge that she has it.  I pray she does not face the same fear and struggles of her brother.   My husband,  struggled with feelings of guilt that he passed this disorder to his children.  And if the tables were turned, I am sure I would struggle to keep such thoughts out of my mind as well.  After all, it is out of his control.

There is no self help book that can adequately describe this journey, but the journey continues and the joy in my heart is increasing.  I cannot imagine facing these trials without my faith.  I shudder to think that I believed I had fallen from grace, that God had turned His back on me.  And yet, in the brokenness, He carried me to a place where my heart and eyes were opened again to His unfailing love.  These are good lessons.  These are good gifts.  I am wiser for them and they sustain me through the continued uncertainty of life.

Be joyful in hope, patient in affliction, faithful in prayer
Romans 12:12

Tuesday, April 23, 2013

NF Forum 2013

This past weekend we attended our first NF Forum, a weekend long patient and family support meeting  where we learned from the best medical experts about living with neurofibromatosis and the latest medical advances and research initiatives.  Just before leaving for the Forum, we received the results of our parental genetic testing letting us know that Big Philip also has NF.  The good news is that at age 38, he has no known symptoms and has not had any serious health concerns in his life.  He will have a clinical appointment with Dr. Korf in the coming weeks, just like Helen, just like Little Philip.

Over the past year, we connected online with other families around the country and in some cases, the world, through the NF Moms Rock and NF Dads Rock facebook groups.  Meeting them in person, hugging them, watching our kids play together, the experience was so very rewarding.  We grieved together for the challenges people with NF can face due to tumors, bone deformities, learning disabilities, blindness, deafness, severe cosmetic concerns, just to name a few.  I grieved for one mother I met who loss her husband several years ago to an NF brain tumor that had turned malignant.  She was there with her beautiful son, a spitting image of his father, who also has NF.  Despite the sadness, the weekend was also about celebrating recent medical advances and the dedicated physicians and the research community that make that happen through their recent clinical drug trials and other research initiatives.  Physicians from the Mayo Clinic, Boston Children's Hospital, Vanderbilt (go 'Dores) to name a few.  These physicians presented their research to us, offering us hope, sharing their passion for finding a cure for NF.

On Sunday our Nashville family, the Gaffrons and Extons joined us in the NF Walk, where we raised over $1400 for the Children's Tumor Foundation's research and advocacy efforts.  It was a beautiful day and coming together with our friends and family and it was a beautiful way to bring hope to our own lives and the lives of other NF families.

And now we will begin ramping up our efforts to establish and Alabama NF Support Chapter through the Children's Tumor Foundation.  We have connected with so many families here in Alabama that we feel compelled to do this, to offer hope, encouragement, support for the newly diagnosed and for families facing the challenges of managing NF in their own lives or the lives of their family members.  We have a facebook page, Neurofibromatosis Alabama and have established an email for families and patients in Alabama to contact us at  We will work with UAB Genetics on the NF Clinic Days to raise awareness and support and to continue to educate ourselves and other families about NF.  One day, there will be a cure and we pray that our efforts in some way, play a small part in helping this happen.

Tuesday, April 16, 2013

Kindergarten Is Around the Corner

 Our wonderful elementary school PTO tied beach balls and welcome to school cards to all the incoming new kindergarteners mailboxes this week.  Helen is the second youngest child on our street so all of our neighborhood friends came out to congratulate her when we arrived home Monday evening.  Helen was very excited and can't wait.  Her parents, on the other hand, are stocking up on tissues at Costco.  Where does time go?