Tuesday, March 1, 2016

The Girl With The Headache - Part 2

If you haven't read part one - go here.

Tender Mercies

Throughout this ordeal of physical pain, emotional pain, helplessness and frustration - we have not been without blessings from our Heavenly Father.  There have been so many little tender mercies that we have experienced, and I'd like to share 3 that were especially needed and filled us with gratitude.

Pedals for Hope

Every year our 8th grade class does a cancer fundraiser called Pedals for Hope.  The students participate in a bike ride to raise money for the Huntsman Cancer Institute.  Ambria has been looking forward to this ride since she was in elementary school.  She was heartbroken at the thought of not being able to participate, now that it was finally her turn.  Her doctor gave her the okay to go ahead and try it, provided that her pain was manageable enough on the day of the ride.  The week leading up to the ride she wanted to practice on her bike, as she had not ridden since long before her condition began.  But each day she was just in too much pain to try.  We prayed hard.  The evening before the ride, she got her bike out and began to ride around the neighborhood.  She found that her balance and equilibrium were not what they ought to be to ride a bike.  She was very discouraged, as well as nervous about how she would be able to do the next day.  She wanted to participate so badly, as serving others is such an inherent part of who she is.  More prayers were offered before heading to bed that night, as well as in the morning before heading to school.  Prayers that her endurance and balance would be okay (she also has Asthma), that her pain would be manageable, and that the sun would not intensify her pain.  The kids were doing laps along a riverside bike trail.  It was up to them how long and far they would ride.  Ambria set off with a determined heart, with her kind, beautiful friend E by her side.  Together they rode, and kept riding.  In the end they went the second longest distance in the grade - just under 20 miles!  Although the pain intensified immediately upon finishing the ride, and was harder on her than usual, this accomplishment was so so good for her heart.

Taking the field one last time

One of the hardest parts of quitting soccer for Ambria was that she was missing out on the final season that her team would be together under the coach that had been coaching them for years - since they were little.  Her age group was moving up to the high school level, his daughter had decided not to continue playing, and he coached 2 other teams as well.  So it was the final season for this team to stay together, many of them having "grown up" in the game with each other.  

From the time of her team's second to last game I had been thinking about the idea of allowing her to play the last few minutes of this final game.  The idea terrified me.  I knew it would be a big risk.  If she hit her head at all, it would be a disaster.  But after much prayer, and discussion with her dad, we decided that if the pain was low that day, we would ask her coach to put her in during the final minutes of the game.  We didn't tell her though, just in case.

She went to the game in full gear, to really feel as much a part of the team as she could.  Near the end of the game, her pain level was fairly manageable (such a miracle considering that she'd been out in the bright shining sun for nearly 90 minutes), so I went and talked with the coach.  He was thrilled to have her be in the game one last time with their team at their final game.  When he called her up to take the field, and I confirmed that she had my permission, there are no words to describe the joy on her face.  As she joined her team on the field (to much applause from her teammates), I couldn't hold back the tears.  Soccer is SO MUCH a part of her, and after being off the field for 7 months, being back completely transformed her countenance.  I was happy for her to be out there once again, but also my heart broke all over again as I watched her play, with so much joy.  All I could think was, "she BELONGS out there.  She belongs there, but will never be there again."  But how grateful I was that our Heavenly Father had granted her enough relief from her pain to be able to take the field one last time.

Family Reunion

School was finally over.  Ambria was able to start sleeping to her heart's content.  No more early mornings, or long hours of homework.  No more car rides back and forth to school.  This is what we hoped would finally be the thing to help her get better.  But those first 6 weeks of summer showed little to no progress from where she was when school let out.  She missed girls camp.  She missed Youth Conference.  She couldn't endure the drive to either place, or tolerate being out in the sun all day every day.  She was beyond frustrated.  We had our family reunion approaching the first week of August.  It was an unimaginable 7 hour drive away (she literally only has to be in the car for a matter of minutes before her pain level shoots sky high).  We couldn't even imagine how she would make that drive, or be able to enjoy the trip once we were there.  But we kept praying, and doing all we could under our doctor's directions to try and help her.  Then one day in the middle of July, she had her first moments of her head being pain free.  It didn't last, and all of the regular triggers would still shoot her head pain straight up.  But it did give us a little bit of hope.  Our doctor had us try a motion sickness medicine that would also make her drowsy.  We did our first trial run on a 25 minute drive to our kids' music lessons.  She was out cold before we hit the freeway, and then we had a really hard time waking her up! But the ride wasn't miserable for her, and her pain level was low.  The time came for us to make our trip.  We were worried, but with all the faith our hearts could muster, we drugged her up and hit the road.  She slept the entire way!  And what was more miraculous was that when we reached our destination, she was headache-free!  She wanted more than anything to enjoy this reunion.  We had told her she probably wouldn't be able to go out on the boat or anything where the motion would trigger her migraine.  But as she made it through that first evening with no headache, and the next day was still pain free, we agreed to let her try going out on the boat, as it was a pontoon boat and our cousins whose boat it was were aware that we might have to turn back at any moment to bring her back to shore.  We headed out on the lake.  And she did great.  She had her head go up a little bit when we had to make a quick stop where the water got shallow, but other than that she was pain free during the whole afternoon.  Jeremy has done water sports his whole life.  He told me that in all his life he has never, ever seen a lake as still and calm as that lake was that day.  Even when another boat passed nearby,  it was like glass, with not even a ripple to rock our boat and cause Ambria any discomfort.  She was able to enjoy a day out on the lake with the rest of her family and it was a beautiful thing for her dad and I to watch.  It was these moments of joy that we had previously taken for granted, that we had missed so much for the past 6 months.  Ambria was able to enjoy the remainder of our time at the reunion (one more night and morning) without being bothered by a migraine.  I know that this was another tender mercy granted by our Heavenly Father, so that we would know that He is there, and is aware of us and our trials.  Her headache returned with a vengeance on the ride home, and we hated that, but those three days being able to enjoy our family reunion were such a tremendous blessing that I will always remember and be grateful for.

These 3 experiences were nothing short of miraculous, considering that when she walks out into sunlight, her headache immediately increases in intensity.  Even a short car ride shoots her migraine up, sometimes to the point of tears.  And physical exertion always magnifies her pain - which is most frustrating of all for my active girl.  

Having these gifts granted to her by our Heavenly Father help us keep moving forward, with hope and faith that in time, Ambria will be able to lead a more normal life again, free of the pain that has been her constant companion this past 12 months.


the girl said...

Xazmin, I've been following your blog for a long time. This post, and the previous one, hit me in the feels. I've had migraines my WHOLE life, vision-reducing, hurts to blink, hurts to breathe, crying makes it worse, can't drive in the sun or snow, type of migraines. I'm 29 and to this day, we still have no idea the cause. I also have a heart condition, so I'm unable to take most medications. I had given up hope of ever being pain free, no amount of Tylenol or Excedrine even made a dent in the pain. Over Christmas, my sister told me about the Daith piercing. I searched as much as I could, and figured it was worth a shot. I mean, the last time I tried something I ended up getting heart surgery and crossing my fingers that my migraines would go away. I figured if the piercings didn't work, I'd just have 2 new holes and I could take the piercings out. We prayed, fasted, got blessings, had my name down on the prayer roll, everything. I cut caffeine, sugar, carbs, fake sugar, everything took a turn. But the PIERCINGS WORKED! I got both mine done, and before he was even done with the first, the migraine I had going in the door, was GONE.

I flip flopped a lot. Why did I have these migraines? I go to church actively, fulfill my callings, pay tithing, why did I have migraines? And was getting these piercings worth it? Was getting ride of the migraines worth the looks and judgement from other church members and people here in Utah. When my 4 year old turned to me and said "Mom, you're so happy lately!" I knew it was all worth it.

Anyways, I guess I'm just saying, you should look into it for your daughter. They helped me get my life back. The guy who pierced them said 20 of 22 people don't have migraines anymore. I'm not sure about consussion migraines... I hope she finds relief. She sounds amazing. :)

Karen Peterson said...

What amazing blessings Ambria received in the midst of this trial. I'm so glad she got to enjoy some of the things that mean so much to her. I hope there is a very happy ending to her story.

Emmy said...

So so glad she had these little miracles in this crazy time. She truly is an amazing girl