Friday, March 11, 2016

Friday Five - Spring Fever, Best Friends, Soccer and more

I'm joining Friday Five with Emmy.  Five thoughts and five pictures.

Five Thoughts:

1 - I dug out my flip flops and have been wearing them for a couple of days.  I'm SO over winter and ready for spring and the outdoors.

2 - Another spring thing I'm looking forward to is Spring Break.  I cannot wait for those days of sleeping in and not having to get my kids to school!

3 - What I REALLY can't wait for is Summer Break! Camping, swimming, warm nights, longer days - it all sounds so heavenly right now!

4 - Ambria has a consultation today that could change everything.  I'm extremely nervous.  I don't want to get my hopes up - but I'm afraid it's too late.  I will be crushed if they can't help her.

5 - Soccer season is upon us.  And although I won't have any kids playing this year - we're super excited to watch our RSL boys have an awesome season!

Five Pictures:

My heart broke into a million pieces when this boy was stolen to go start a new team in NYC.  But my faith in humanity was restored when he came back home this season. I cannot wait to see him back playing in the RIGHT colors. :)

Just because Ambria isn't allowed to snuggle up under a blanket with a cute boy to watch TV, that doesn't stop Hollyn from making herself nice and comfy with HER best friend. ;)

Mr. H from our school.  For the past 8 years that I've known him, I have only EVER seen him wearing shorts, sandals, and his lab coat (he's the science teacher).  He bought this suit for our annual food drive and told the kids that if they raised 2400 lbs of food for the food bank, he would wear a suit to school on "Formal Day" of spirit week.  The kids rallied and raised over 4500 lbs of food for the less fortunate!

Brielle at her Discovery recital.  Her group performed "Carrying The Banner" from Newsies.  It was awesome!

Cousins watching cartoons on the ipad.  It was too cute not to snap a picture.

You should totally come join Friday Five!

Saturday, March 5, 2016

The Girl With The Headache - conclusion

Part 1
Part 2
Part 3
The Boy Who Loved The Girl With The Headache

Ambria's story is not over.  We still have lots to accomplish to achieve her victory over this condition that has temporarily taken over her life.  It is hard.  Life is hard.  Being a mom is really hard.  But I know beyond any doubt that my Heavenly Father loves me.  And that He loves my daughter more perfectly than I can even begin to imagine.

Through all of this, I've never doubted that Heavenly Father knows what He's doing.  There is a purpose, maybe many purposes for this trial.  I want to end this series of posts by sharing things that I have learned over the course of this past year.

I have learned not to judge.  I try hard not to worry about what other people think of me.  It is a weakness that I haven't overcome yet.  So this experience has been quite humbling for me.  I've often wondered how our situation appears to others. Ambria misses so much school and church because of pain.  Mornings are her enemy.  No matter how early she tries to get to sleep - she is unable to, and if she gets up early in the morning, she cannot function through the pain.  However if she sleeps until late in the morning, by early afternoon, although still hurting, she can often make it to school for the last couple classes of the day.  Sometimes she even feels pretty decent by late afternoon and evening.  It is these times that most people see her.  She tries hard to be her normal, smiling self when she's around people, and I wonder if others realize that this is just a small sliver of her life, and that for the other majority of her time, she is curled up in pain or sleeping. I wonder if people at the school question the fact that she misses so much school, but then comes in after school for her student council meetings.  Or if people wonder why, if she's in so much pain, she participated in the school musical, and how she managed to do it.  (At the time of auditions, she was still doing well from her summer of rest.  As rehearsals commenced she got worse and worse, and it was a tremendous and painful struggle for her to continue on.  But she was determined to fulfill her commitment, and to participate in her last ever school musical as she is leaving the school next year).  I wonder if people realize why, even though she misses days of school because she can't physically make the car ride and sit in class and work, I still allow Justin to come over to keep her company or help her with homework.  If she enjoyed skipping school, I wouldn't allow it.  But she HATES missing, and being left out of everything her classmates are doing.  And I want to help her to feel less lonely in any way I can.  So if that means letting her favorite person come over and keep her company after another lonely day of missing school, then so be it. I already mentioned how I wonder what people think of the two of them spending so much time together in general.

I wonder if the drivers that honk at me, yell at me and sometimes flip me off, knew how much pain every speed bump, train track, driveway dip, and pothole caused my sweet daughter, would they still be so angry with me for how I have to slow WAY down to go over or through, or avoid each one of those things as I drive?  Would they be more understanding of how I have to start slowing down long before I reach the stop sign, because braking kills her head, and I have to ease into it as slowly as possible?  And how when I accelerate, I have to also ease into it so slowly and gently because the pressure of acceleration also causes intense pain?  Would they have any sympathy for the fact that when I am driving her, I am a bundle of tension, my stomach tied up in knots as I try to watch the road from all angles, afraid that I'm going to miss something that will cause my daughter great pain?

I've had to accept that I have no control over what others think.  I know that only I see the whole picture and I'm making the decisions that I feel are right for my daughter, and my family.  On that same note, I have learned that I also don't know the whole picture of other people's situations, and it isn't for me to decide if they are or aren't handling things they way I think they should.  I've always "known" this principle of course - but this experience has really helped me see that first hand.

I have learned to pray.  Of course I have prayed my whole life.  Sometimes more faithfully and earnestly than others.  But I've always prayed, and always believed in the power of prayer.  However it wasn't until this experience that I truly learned what it means to "cry unto Him in mighty prayer and supplication," as Enos did.  Over these past months I have spent more time on my knees than I think EVER before in my life.  And I have learned to do more than just thank Heavenly Father for my blessings, and ask for the blessings I desire.  I have learned to truly pour out my heart to Him.  To share with him my heartache, my sorrow, my fears.  I have learned to let Him comfort me in the darkness of night when everyone is asleep and I'm alone with my broken heart.  I have felt the reassurance of His perfect love for me, and for Ambria.  I have learned to listen carefully for answers and promptings as we've had so many suggestions for different treatment options, medications, or programs that we should try.  I have developed a closer relationship with my Heavenly Father as I have turned to Him in prayer more frequently and more earnestly than ever before.  For this I am truly grateful.

I have learned to let the Atonement heal my heart and my spirit.  Never at any time, even when I was losing my dad, have I needed to feel the healing power of the Atonement in my life more than I do now.  To have the reassurance that my Savior knows my sorrow and heartache.  That he can truly be my source of comfort, as He has experienced all of it himself.  I've learned to turn my burdens over to Him as I kneel in prayer, or when I'm feeling my weakest, and ready to break.  There is nothing that has helped me more than this knowledge, and the ability to lean on Him and feel His love and compassion encompass me.  I know He will make everything right.

I have learned patience.   Okay, I'm still working on this one - but it's coming along.  During the early weeks of Ambria's condition she was given a priesthood blessing.  In that blessing she was told that this condition was temporary.  I wanted to know what "temporary" meant!!  A month?  6 months?  A year?  I want to know so badly when this will finally be over.  But I am learning to have trust in the Lord's timing.  To stay faithful, and keep doing everything I can, and let the Lord do the rest in his own perfect time.

I've been taught my whole life that we are given trials for our good.  Our "refiner's fires" to help strengthen and perfect us.  I've never doubted it.  But going through this has been tiring.  And I have grown weary at times of "being refined."  But I was recently in a church meeting where a quote from President Uchtdorf was read.  I don't even remember the quote.  What I do remember are the thoughts and reassurances and words that came into my mind.  They touched me so deeply that I wrote them down in my planner.

In that moment I felt the Spirit remind me, and reassure me that I have a divine destiny.  As does my daughter and the rest of my family.  We are meant to become so much more than we currently are.  And that it is ONLY through adversity that we are able to become who we are meant to be.  There is no other way.  And God loves each of us so much, that he allows us to go through these trials, even if it hurts Him to watch.  Even if he'd like to take away our pain.  Because He knows who we are meant to become, and He wants us to reach that eternal potential.  Having that confirmation lifted my spirits tremendously, and when I feel about to break again, I reflect back upon that experience, and am reassured again of my Heavenly Father's love, and my faith in His perfect plan is restored.

Thank you to all for your kind comments, your compassion and your love and prayers.  They truly have lifted and sustained us.

Thursday, March 3, 2016

The Boy Who Loved The Girl With The Headache

Meet Justin.  He is Ambria's absolute best friend, confidant and hero.

It is this boy's kindness, support, and heartfelt concern that has gotten Ambria through her hardest, loneliest times.  We are so, so grateful for the blessing he has been in her life through all of this.  I couldn't tell her story without acknowledging him, and what a huge role he has played in helping her endure this trial.

Ambria and Justin have been good friends for about 2 1/2 years.  They met while both performing in the school musical.  She was in 7th grade, and he was in 8th.  Their friendship became even stronger about a year later thanks to some silly teenage girl drama (insert eye roll), when he stood up for her to some other (girl) friends of his that had a problem with his friendship with Ambria, and started saying some not nice things about her.  He and Ambria were pretty tight after that - but nothing would strengthen their bond like the trial Ambria was to face next, and the worth of his friendship has been proven a million times over.

Justin is the friend that helped Ambria out to the car that night of the region dance when this nightmare began.  He hasn't (emotionally) left her side since.  

When Ambria first started missing out on all her school days, she began to feel very lonely and left out.  All of her friends were continuing on with life and fun and laughter at school together.  And although I know they each cared about her, and wanted her to be better, they're also kids - teenagers that have their own lives and things that are going on. I knew that Ambria wasn't at the top of their thoughts all the time when they weren't all together.  And that is absolutely okay.  I had no resentment about them continuing on with their lives while she was at home trying to get better.  I also know that people, and especially young people, just aren't sure how to reach out, or what to say, or how to act when someone they know is going through a trial like this.  But it was still very lonely for Ambria.

However, Justin was different.  Ambria WAS at the top of his thoughts all the time.  Even when she wasn't with him and their other friends.  He was truly worried about her, and was ALWAYS checking up on her.  When it became apparent that Ambria might not be returning to school anytime soon, he took it upon himself to help her feel less cut off from everything that was going on.  Justin's mom teaches at our school, and is usually there for an hour or longer after the school day ends.  So he started coming home with my other kids after school, and visited with Ambria until his mom left school and picked him up.  He brought the stories of their friends and everything going on at school to her, so she could stay caught up on everything.  He visited with her, and made her laugh (although that made her head hurt worse!)  He brought back her smile that had been missing for so long.  And when she just didn't have the strength to talk because the pain was too much, he let her sleep.  She didn't have to feel like she had to be "on" all the time like she would if other friends came to visit.  He made her feel okay about laying down on the couch for a nap when she just couldn't keep going.  He was fine to patiently sit and watch TV, or play blocks with Hollyn while Ambria got the rest that she needed - knowing that he'd be there when she woke.  I'm getting emotional all over again, just typing this.

I know Ambria knew that she had us.  She had her dad and I in her corner and on her side every second.  But it's just not the same as having someone YOUR age to be with you, and help you, and listen and try to build you up and help you feel better.  What a blessing it was that she had Justin to be all of those things for her.

I know that in my community of friends there have probably been a few raised eyebrows, maybe even some disapproval for how much time I've let them spend together, without their other friends around (although always 100% chaperoned by myself or his parents).  We have a pretty conservative culture and some prominent beliefs (beliefs I wholeheartedly embrace) about boys and girls pairing off at a young age.  I would have never thought I would allow a daughter of mine to spend so much time with just one boy at this age.  But the truth is, he is her best friend, and she just is not up for hanging out with a group of friends very often.  She needs to stop and rest frequently, sometimes sleeping for an hour or more when Justin is over visiting.  That's not really something she can do with her other friends.  And as time has gone on, and I've seen the gift that Justin's company is to her, there's no way I'd take that away, and have her be lonely and sad all the time.  This friendship has saved her over the course of this past year.

When summer came, Ambria hoped and pleaded and prayed that she would be able to attend our church girl's camp.  It was MaiLee's first year attending, and Ambria wanted so badly to be there with her for her first experience with camp.  But it wasn't in the cards, and she just was not able to go.  So instead, Justin planned a perfect day for her to help keep her mind off of her disappointment.  Ambria has always wanted to learn to fish.  Justin happens to be a lifelong fisherman!  He scouted around to help me find a place they could fish that was nearby (short car ride and not up the canyon) and that had plenty of shade (to keep her headache low).  Then the day that MaiLee left for camp, he surprised her with a day out learning to fish.  We couldn't stay long, because she just wasn't up for it, but she still remembers it as one of the best days of her life.

Justin is always trying to think of ways that he can help ease her burden.  He knows he can't take away her physical pain, but he tries so so hard to do what he can to take away her emotional pain.  And his patience with her emotions is amazing.  Because she can get pretty emotional at times, and he just rolls with it and lets her have her moment, and then helps her to move on.

We recently went ice skating - something Ambria has been missing so much and has begged to try doing again.  She was given permission from her doctor, with the warning to be very careful because hitting her head would be catastrophic.  We went to the rink, joined by a couple of friends, including Justin.  I had been debating over whether to make her wear a helmet - an idea that horrified Ambria.  At first I gave into her wishes, but as the rink got more crowded, with more and more skaters trying to show off and be fancy - many times causing other skaters to take a spill - her dad and I KNEW that she needed to wear a helmet.  If her head hit the ice - we couldn't even finish the thought.  She was mortified.  She wasn't sure she would even keep skating, she thought it was so humiliating to be 15 years old and to have to wear a helmet at the public skating rink.  She went to the desk and checked out a helmet.  She started to put it on 3 different times, each time dropping the helmet back down to her side before it reached her head, and looking over at me with a mixture of pleading and anger in her eyes.  I wanted to cry - but I didn't crack.  Seeing this interchange, Justin walked away without a word, went to the desk, checked out a helmet and without batting an eye, put it on his own head.  Then he took Ambria's helmet from her hands and placed it on her head.  It was all I could do to keep my emotions in check and not lose it right there in the middle of the skating rink.

Over this past year, I've watched him worry about her, take care of her, write her sweet letters, bring sweet little surprises, he texts me BEFORE texting or calling her, just to make sure she's not sleeping, because he doesn't want to wake her if she is. He has helped her do her piles of homework from all her missed school days.  He has participated with us when we've fasted and prayed for her, and he's been a shoulder to cry on when it all gets to be too much for her.  I've watched him break down in tears himself once Ambria is done for the night, and I'm giving him a ride home.  This big, strong teenage boy, who has had enough of watching someone he cares so much for be in so much pain all the time. He has a huge heart and has given it all to Ambria in her time of need.

He is not only there for her, but has befriended all of her siblings as well.  Hollyn ADORES him, and often fights Ambria for is attention! He is good to everyone in our family and we truly love him.
MaiLee really wants to learn guitar, so he brought his over to show her a few things.

Waiting with Hollyn after school for Ambria to get out of a meeting.
As you can imagine, they have formed quite a bond.  And as Ambria has gotten stronger, she's been there for him through some personal trials of his own.  Doing her all to repay him for all that he's been to her through this struggle of hers.  As I've watched their relationship grow, I'm struck by how truly blessed they are to have each other - because they both honestly have each other's best interest at heart and want each other's happiness more than anything else.  That's not to say that they ALWAYS see everything eye to eye - but they have grown pretty smitten with one another.

Do I think they are WAY young to have such strong feelings for one another?  Of course I do.  I worry often about how things might play out as they are still so young and have lots of growing and changing to do over the next few years of growing up.  But I don't know how you go through something like this together, and not develop strong feelings. And I wouldn't trade any of it away, because this relationship has truly been a gift and a blessing in her life when she needed it most.  There are honestly no words to express what his care for her has meant to me as a mother.

Whatever does happen in their futures, I will be forever grateful for Justin's friendship, and all he has done for, and been to my daughter.

Wednesday, March 2, 2016

The Girl With The Headache - Part 3

Read part 1.  Read part 2.

The highs and lows and where we're at now.

I wish I could say that since summer break Ambria has just kept improving and things are looking wonderful.  But unfortunately that is not the case.

There was a time that our hopes were soaring high.  After all the physical pain and the emotional heartache, one day it all started to go away.  It was July 13th - four and a half months from that horrible night of the region dance.  Many doctor's visits, different treatments, dietary adjustments, supplements and medications later - Ambria woke up one morning and sent me a message.  She asked me to come into the bedroom where she had been sleeping.  I rushed in to see what was wrong.  She looked at me with a sort of puzzled expression and said, "My headache is gone."  I heard what she said, but that didn't keep me from asking, "What?"

"My headache is gone," she repeated.  I didn't know what to think.  I wrapped my arms around her and just held her in relief and shock.  "I wanted to tell you first, but I have to call Justin now!"  (Best friend and the person who has been her rock and her biggest cheerleader through all of this.  More on him next time).

It was a great day.  Her joy was short lived, as her headache returned within an hour or so, but I told her to sleep, and the next time she woke up it was gone again! This pattern continued, and her stretches of time with no pain kept growing, and the painful time periods kept shrinking.  She was waking up every day without a headache, and we were able to start really managing the triggers as well.  She started being able to get her pain to go down or even away with food.  And if she ate during a car ride, most of the time it kept her pain from getting too intense.  We had to keep lots of snacks on hand, and she slept a LOT (Anywhere from 11-13 hours a night, and off and on during the day).  It was a sometimes tiring way to live, but it was helping and that was all that mattered.  She was still unable to do any physical activities without her migraine rushing right back, but she was able to enjoy days without constant, debilitating pain.  We thought this was the home stretch, and that soon she would be completely better.

School started and she was still going strong.  Her class went on their first camp out of the year and she was able to go, to participate, and to stay the whole time!  It meant so much after the crappy way her school year before had ended.  But as time went on, the early mornings, the car rides back and forth, the focus on school work all day every day and the lack of opportunities to nap throughout the day started to take their toll.  She started missing her early morning Seminary class that she loved so much.  Then she started missing school in the mornings because she was just in too much pain to make it to school that early.  Then she started missing whole days.  We're gradually sliding back to where we were at this time last year.  And it sucks.  The worst of all of it is seeing her discouragement and sadness return.

Things she's had to give up due to this condition: Soccer, activities with friends, riding the bus for fieldwork at school, participating in fieldwork, attending school regularly with all her peers, her music lessons, her early morning seminary class (we pulled her out and she now has a home-study teacher come to our home and help her), riding in the car with friends or family (I drive her whenever she needs to go somewhere, because I know every little thing that will hurt her head, and am able to make it less painful than other drivers who aren't used to her condition), regular church attendance, sports of all kinds, her active, involved lifestyle.  All of these are casualties to the constant pain that has taken over her life for this past year.

As a mother, I can't think of any worse torture than watching your child suffer.  Watching her be in physical pain pierces my heart and it literally hurts.  Watching her emotional suffering? Her loneliness, discouragement and sadness?  THAT tramples my soul.  The helplessness I feel is at times absolutely crushing. She is not the girl she was a year ago.  Before this pain, she was active, outgoing, fearless, funny and full of confidence and life.  Now she is sad, isolated, often times insecure, and the laughter that used to fill her days comes around much less frequently.  Now her days are often filled with tears.  Sometimes I don't know how she bears it all, and I feel that watching her go through this is more than I can bear myself.  I just want to fix her.  I want my girl back.  And I want her to have her life back.

What her life used to look like:


What it looks like now:
After a short (15 minute) car ride.  She couldn't even get out of the car.

After the 25 minute drive to piano lessons 

Most of the time when she's not trying to go to school or church.

As I mentioned previously, I know there are families struggling with far greater trials than what we are facing, and I feel guilty for bearing our burden so poorly.  But knowing that honestly doesn't make it any easier to watch my beautiful girl struggle.

We aren't giving up, and will continue to pray, and to search out and try new things until we find something that will work and help her get better.

The Boy Who Loved The Girl With The Headache

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.

Sunday, February 28, 2016

The Girl With the Headache - part 1

One year.  It was one year ago today that my oldest daughter walked away from a church dance with a headache that would completely change her life.  That's not where it all began though.  It began long before then, with a girl who had a passion for soccer, and an extremely competitive nature.

I haven't posted much on social media, or at all on my blog about her situation.  I don't like to publicly dwell on and lament about my family's trials.  I don't want to seem like I'm fishing for sympathy, or like I'm needy.  Maybe I'm just too prideful and don't want to seem weak.  Also, I know of others who are going through far worse trials and I feel guilty talking about ours.  But enough people know bits and pieces of her story and wonder what exactly is going on, so I thought it was time to get it all out there.  Perhaps her story will reach someone else who is going through a similar trial and help them feel less lonely.  And it will be good to have it all recorded to look back on when this is all over.

Ambria was my athlete.  Of all my kids, including my son, she is the one that took to playing sports.  And from an early age her sport of choice was soccer.  Oh how she loves it.  And over the years she became quite the soccer player, if I do say so myself.  She's also very competitive, and fearless.  This combination can lead to trouble when you're a pre-teen playing co-ed soccer.  That's the time the boys start surpassing the girls in size and strength.

April 27, 2013

It was a beautiful morning for a soccer game.  The sun was shining, and the wind that often pestered the young players and their adoring fans was absent.  Ambria was playing some of her best soccer to date, and her team was up, with the end of the game near.  That's when Ambria and a boy from the opposing team both went full steam ahead for the ball.  He beat her to it and kicked with his full force.  She was just seconds away from reaching the ball from the opposite direction, so you can imagine the force of the impact when the ball hit her square in the head.  It snapped her head back and laid her out flat.  The game went on briefly, but time stood still for me, as I waited for her to get up and walk it off.  Only she didn't.  The ref halted play and I couldn't get to her fast enough.  When I reached her she was still on her back, her coach and players from both teams huddled around her.  It took several minutes before she was able to sit up, then stand and be helped off the field.  She walked off the field to applause, but she didn't hear any of it.  She wasn't aware of anything around her and we barely made it off the field before she sank back to the ground, unable to walk further.  We hadn't reached our family or our team, but she needed to stop.  We sat there, her resting and drinking water, until the game ended.  As we made our way to the car, it was clear to her dad and I that we needed to head to the ER instead of home.  It was, of course, a concussion, and she had a hard time counting, as well as reading sight words without having to sound them out. There were more tests, I can't remember them all, but she was told not to read, or watch TV or do computer work or homework or anything to stimulate her brain as long as she was feeling dizzy or headachy at all.  She was not to return to sports until she went 10 full days with no concussion symptoms. It was a long couple of weeks for her, but her symptoms went away fairly quickly, and finally she was able to get back to her regular activity.  Then, her first time playing soccer at recess, she took another ball to the head.  It wasn't nearly as hard but still did some damage, since she had just recovered from a concussion as it was.  Over the next 10 months she suffered 2 more concussions for a total of 4 concussions in 12 months.  She missed the end of her soccer season, but recovered relatively well.  Life got back to normal, although she occasionally got headaches in the car, or a little dizzy on amusement park rides.  She continued to play soccer over the next season and 1/2.

February 28, 2015

Ambria was attending a church region dance with some friends.  I got a message near the end of the dance that she had a horrible headache.  She had to be helped out to the car by her friend whom we were also giving a ride home. She had suffered a similar, extreme headache a few days prior after being spun on a hamster wheel toy at a local playground, but it went away after some rest.  Not this time.  She spent the next week curled up in bed or on the couch, in pain.  It was a debilitating pain that kept her from attending church or school.  We were able to get her into a headache and migraine specialist where she was diagnosed with Post Concussive Syndrome with chronic daily migraine.  Basically everything in her brain was mis-firing and causing the symptoms.  It was a relief to know that it wasn't something life threatening, and we expected things to get better with some treatment and a little time.

That week stretched into a month.  Then 2 months.  Then more.  There was never a waking moment that Ambria wasn't in pain.  She missed excessive amounts of school and church.  And the emotional toll it took on her was harder for this mama to watch than even the physical pain my girl was in.  She made such a valiant effort to stay positive, be grateful for her blessings, and put on a brave face for others, but she began to feel very isolated and disconnected from her friends at school.  She has always been outgoing, active in everything, and very involved with what was going on.  Now she was missing out on all the fun activities that go along with attending a school like ours, that focuses on experiential learning.  She wasn't able to go out with her group of friends anymore, to the park or the mall or the movies.  Life at school was moving on without her.  She was very discouraged and lonely and it broke my heart to watch. The pain medicines prescribed did nothing to ease her pain.  But there were rare times when the intensity of her migraine was lower and she was able to push through the pain and make it to school or to church.  She also started having struggles with her cognitive skills.  It was hard for her to focus.  She often got dizzy, lost her balance, or had brief vision blackouts.  She would start a sentence and then lose her train of thought and not remember what she was trying to say.  It was scary and frustrating for her, at 14 to feel like she was losing her ability to concentrate and communicate fully.  We learned the triggers that would cause her pain to increase (car rides first and foremost, then bright light, especially sunlight, then lack of sleep and not eating frequently enough).  Car rides and sunlight are impossible to avoid, but we did our best to adapt and try to make the situation as bearable as possible. Still, she basically felt like she was missing out on life.  Were it not for the amazing support and friendship of a kind-hearted boy who has been by her side through everything, I'm not sure how well she would have endured those last months of school, and into the summer.

As more time went by, she seemed to be making small improvements.  The times her migraine was at the highest pain level seemed to be less frequent throughout the day and not last as long.  And the times where the pain was lower seemed to be more frequent and last longer.  It helped me have hope that there was a light at the end of the tunnel.  Still, there was never any time during the day or night (unless she was sleeping) that she wasn't in a great deal of pain, and she became increasingly disheartened and frustrated.  She cried easily and often - which led us to discover that another big trigger for her pain intensity was crying.    It gave new meaning to the term "crying headache."

Spring soccer started and when the pain wasn't too intense, we went to the soccer fields so she could support her team from the sidelines. She felt that it was something she should do, but I hated watching her heart break each time her team took the field without her.  The season progressed, but Ambria's recovery didn't.  To add insult to injury, it was determined that she should not play soccer anymore, even if she recovered completely from her symptoms.  Losing soccer for good has probably been the hardest thing for her to accept in all this.  This is a picture from the second to last game of the season.  She cried throughout and I could do nothing to help her heart.

She attempted to attend the final camp out of the school year, but the ride up the canyon and being out in the sun was too much for her and we had to bring her home after the first night.  She was so angry at missing out on the last outdoor experience with her classmates before school ended, and many of them moved on to different schools.

Tender Mercies

Over the course of these painful months, we were not without blessings from our Heavenly Father.  And how grateful I am for the times we were granted tender mercies that gave hope and comfort, and helped renew our faith. There are three times in particular that especially stand out in my memory.  As this post is already extremely long, I'll save them for next time.

Friday, February 26, 2016

Friday Five

Five thoughts, five pictures.  Easy peasy.  Today I'm linking up with Emmy for Friday Five.

1 - I have too many kids.  Seriously.  I'm not saying I'm willing to give any of them up...but with 3 of them in their teen years and involved in so many activities for church, school, and their music - I honestly need a clone to get them all to the various places they all need to be throughout the week, often their commitments overlapping each other. My oldest does drive, but we are a one car family at the moment! Sometimes I feel like I'm losing my mind! 

2 - I will have one less to chauffer around by the end of summer.  I don't know where time went, but Kaden will be turning 18 and leaving on a 2 year mission for the Church of Jesus Christ of Latter Day Saints.  I don't even know what to do with this yet.  I'm excited and proud and can't wait to see where the Lord sends him.  But I cannot even imagine life without him in this household every day!  Ack!

3 - I'm super excited to go spend 4 days in Seattle with him as a chaperon for his tour with his High School Orchestra.  I've never been to Seattle, and I've rarely had any one on one time with my son this past couple of years because of the whole having too many kids thing, and his busy schedule (besides playing in the orchestra, he is the Orchestra Council President, on the Seminary Council, and on our Stake Youth Committee).

4 - I'm working on a series of blog posts about an emotional situation in my family.  I've felt prompted to do the posts for awhile now, but am feeling very anxious about putting it all out there.  I'm kind of private about family stuff - which I know - weird for a blogger.  But the first post will appear on Sunday.  

5 - Even though I have too many kids - they are the light of my life.  For my 5 pics, I'm just going to share a picture of each one of them.  So if you haven't seen them in awhile, you can see how they've grown.  Or if you don't know me, or my blog, you can "meet" them. :)

Kaden and his beautiful best friend/girl he's crazy about.  They served on orchestra council together representing different schools with a combined orchestra.  She is currently away at school - we'll see what happens when he returns from his mission. ;)  Photo Credit.

Ambria is 15 and growing more beautiful with each passing year.  She's always the one that takes the photos, so I had to steal this selfie off of Instagram!

MaiLee - 13, right after the school musical.  I can't believe how grown up she's getting.  Yeah, I totally cropped the other kids out of the picture. ;)

Brielle just turned 9.  She was just an itty bitty, funny, mischievous toddler when I first started this blog.  Where has the time gone??

And Hollyn.  She's 3!  And this look on her face says it all.  She is trouble!  Our spoiled, funny princess.

Link up to Friday 5 and play along!