I have cried the tears over my cancer diagnosis.  Fear of the unknown brought the torrent initially.  Shock over hearing the big “C”.  I couldn’t hold the waterworks at bay as I told my husband, my mom, and then my sister.  But that was about the extent of those kinds of tears.  I won’t pretend that I am completely at peace.  My blood pressure readings at medical appointments would give me away.  And there have been bouts of insomnia as my mind swirls with all the information and possibilities, but antidepressants and Jesus help me cling to positivity.  I’m not naive enough to think that I am completely passed the emotional upheaval of this journey, but for now, I really am ok.

Believe it or not, when the tears come now, they are happy tears.  They come when a care package arrives full of bright sunshine.  When a friend makes me a special blanket to hug my body during the toughest times.  When a dear one who lives 160 miles away signs up for my Meal Train (what?).  When the prayers and words of love and encouragement flow non-stop.  When we sing this song at church:

“How He Loves”
(originally by John Mark McMillan)

From the lyrics of this sweet song to the hands and feet that God has used, I see constant reminders of His love for me.  That makes me cry.  He loves me so much more than I deserve.  He loves me unconditionally and without end.  Romans 8:38-39 comforts me.  “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”  That promise wraps me in an embrace warmer that even my new favorite blanket can.  It’s a promise for all of us.

We’ve had Shelby’s diagnosis for years.  Dravet Syndrome.  A rare and severe seizure disorder characterized by psychomotor developmental delay.  The seizures are resistant to treatment and the mortality rate is much higher than in the general population.  It’s pretty grim.  It’s VERY tough.  But it is our normal.  It’s a part of who our girl is and she is “fearfully and wonderfully made”.  As the challenges have morphed and changed over the years, so have we.  There are sleepless nights, tears, confusion, and still after all these years – surprises.  Through lots of prayer, the help of many experts, and counseling (for me) we have done our best to trust God with it and walk in His goodness.  Some days my husband and I handle it with more grace than others, but God is holding us up every step we take.

But what happens when the next curve ball has nothing to do with Dravet?  When Mama now has her own special needs?  I have been diagnosed with non-invasive breast cancer.  This isn’t something we were prepared for.  It’s not a part of our “normal”.  We’ve spent years learning about Dravet Syndrome.  I don’t know how to deal with cancer.  My sleep, so long now interrupted by Shelby, is suspended while my mind tries to reconcile caring for my daughter’s diagnosis and mine at the same time.  I’ve been kind of private about it up until this point, but it occurs to me that the older our special needs children become, the more common this scenario will be.  Unfortunately.  So I decided to share my struggles publicly – praying that it will connect with someone.  Hoping to bring a little comfort.

My cancer has been caught very early.  That fact is a great relief to me.  But I am still facing a 6 hour surgery and weeks of recovery.  There are so many variables.  So many decisions to make.  So many appointments and tests.  I can get overwhelmed just thinking about it.  So how do I calm a chaotic mind and spirit?  Where does my peace come from?

1.  My husband is a rock.  He does, however, have feelings of his own about all of this.  I have had to remind him that he is allowed to.  This is happening to both of us.  He has moments of fear, sadness and stress, but he has a firm foundation of faith in Jesus Christ.  He knows where our hope comes from, so he is able to be a strong, supportive caregiver to me AND our daughter.  I really could not ask for a better partner.

2.  I have other family members that step up.  My parents are already on-call for whatever I need.  To be at the hospital, to move in afterward and help take care of me and the kids, to wrap up some home improvement projects we have been working on – even if all I needed was a hug, they would drive the hour and a half to do it.  That means the world.  My twin sister has offered to get permission to work remotely so she can be at my house after the surgery and assist me and the kids.  My younger sister is reminding me how much she loves me by bringing the humor.  Perfectly timed jokes about me “nipping” this thing in the bud come at just the right time!  My in-laws have worked tirelessly helping my husband with tools and paint brushes and are postponing a big trip to be available for whatever I might need.  As long as I am willing to open myself up to help (that can be hard sometimes), I have no reason to worry that anyone or any detail will be neglected.

3.  I have amazing friends.  There have been times I have felt lonely for companionship in our fast-paced world where we are all so busy, but my girlfriends have shown up and shown out since discovering my news.  Every day I receive multiple texts checking in on me, praying for me, speaking scripture over me, and offering their help.  It means the world to me.  And…I have that one friend.  The one who never says no.  The one who drops whatever she is doing and rearranges whatever she has to come to my aid.  If it’s her job, it can wait.  If it’s her kids, her husband can take care of it.  If I have a need, she is here.  And she lives around the corner.  That’s invaluable.  She has proven her faithfulness in much smaller things in the past and she is already going above and beyond in this.  I hope she recognizes herself here, but her humility might blind her to it.  So I better make sure she knows how much I appreciate her.

4.  I saved the most important for last.  My God who “will supply all [my] needs according to His riches in glory in Christ Jesus.”  Phil 4:19  I can have a true soul-level peace because I know that it is all in God’s hands.  “He is before all things, and in him all things hold together.”  Col 1:17  I can see so many ways He is moving in this already.  If you are curious about the details, I would love to share with you because I love to talk about my Savior.  It wouldn’t be authentic of me if I didn’t say that I wish He had seen fit to spare me of this.  I don’t understand the “why’s”, but God says in Isaiah 55:9 “For as the heavens are higher than the earth, so are My ways higher than your ways and my thoughts than your thoughts.”  I don’t expect Him to reveal to me all He will accomplish through this, but I know His character.  I know that He is with me.  “The Lord your God is in your midst, a victorious warrior.  He will exult over [me] with joy, He will be quiet in His love, He will rejoice over [me] with shouts of joy.”  Zeph 3:17  I “have come to know and have believed the love which God has for us.  God is love…”  1 John 4:16  and “if anyone loves God, he is known by Him.”  1 Cor 8:3.  He loves me and knows me.  He sees what I’m going through.  He knows my fears, my needs and even my selfish wants.  I can trust that “God causes all things to work together for good to those who love God, to those who are called according to His purpose.”

It almost seems impossible for me to go back to that split second when Shelby had her first seizure.  Although it is a pivotal moment in the life of our family, so much of it seems foggy and blurred in my memory.  The whole night is shrouded in the fear I felt, details quite probably lost by my mind trying to protect my heart from pain.  I don’t remember what we were doing or exactly when the convulsions started, but I will never forget the full body stiffening and jerking, the obvious distress my baby was experiencing.  Chuck and I panicked as we tried to determine what was happening to Shelby.  Our baby, who was not even 5 months old.  The apple of her parents’ eyes looked like she was dying.  We quickly gathered up what we needed, and for some reason, jumped in our car instead of calling 911.  That became our protocol.  Inexplicably, through the many seizures that would follow, we have still never put her in an ambulance.  I held Shelby in my arms in the front seat of our car as my husband quickly drove to the hospital on the north side of Abilene.

I can’t recall how long she seized that night.  The hundreds of episodes she has endured since then are blended and confused in my mind.  Some seizures stopped before we ever reached the ER, and others would drag on to dangerous lengths – requiring medical intervention.  I do know that I felt relief when it was all over.  But that relief co-mingled with the anxiety of not knowing what was wrong with my daughter and when, or if, such a scary thing would happen again.  The next couple of days were filled with tests upon tests upon tests with no real answers for a VERY long time.  The years since have been filled with medications, doctors visits, therapies, sleepless nights and more challenges than we can count.

That first night, December 5th 2000, though somewhat hazy, started a very long journey.  A journey that has changed us.  It has taught us, and sharpened us, and deepened our faith.  We have grieved and tossed and turned and cried out in frustration.  We have found joy in the little things, and at other times tied the proverbial knot in the end of our rope to hang on.  Dravet Syndrome has SHAPED much of what we are as a family, but thank God is doesn’t DEFINE us.  We strive to live out the faith we have in Jesus Christ to sustain us.  We hope that others see the love Chuck and I have for each other, our children, and those God has placed in our lives.  We respect all others created in the image of God (that’s everyone) and pray our beliefs are evident.

Faith, love, and respect.  Those are the things we are building our family on.  It’s not perfect.  There will be days when you see more frustration and pain in me than you do joy.  That’s just a part of life.  Dravet Syndrome is happening to us, but it’s not who we are.