Sunday, January 8, 2017

The Girl With The Headache - update

It's been almost a year since I first posted here about Ambria and her struggle with Post Concussion Syndrome.  At that time Ambria had already been suffering for a year, and I was at the end of my rope.  To quickly recap, Ambria came home from a church dance with a debilitating Migraine one day in late February of 2015.  And it didn't go away.  For months.  She couldn't go to school, or church, or out with friends. Life sort of came to a stand still for her.  She spent most of her days sleeping, and when she wasn't asleep she was like a zombie and in so much pain.  She was eventually diagnosed with Post Concussion Syndrome.  She'd suffered multiple sports concussions from playing soccer.  She was just supposed to try and treat the pain while waiting for her brain to start working properly again. We had many doctor's visits, tests, dietary changes, different perscriptions, so many things to try and help with the pain.  Nothing helped.  Months kept passing without us being able to find a way to help her.  Those months stretched into a year and I felt like I was losing my mind.

As a mom, watching your child in pain is unbearable.  And on top of her physical suffering, she was in so much emotional pain. Not only are depression and anxiety some of the symptoms of brain injury, but she was also just lonely and heartbroken at all of the things she'd lost.  Like the ability to go to school and church and be with her peers and friends.  She wasn't physically able to go and hang out with friends and interact socially the way she had been used to.  She was just so isolated and discouraged.  To this day I am so thankful for a best friend who stayed by her side through all of it and did everything he could to try and help her feel less lonely and left out.

As I said, I was losing hope.  I spent more time on my knees praying during those months than I have the whole rest of my life combined.  One day I had the thought to re-visit a news article my brother had mentioned several months into Ambria's struggles.  It was about a clinic that treated people who suffered from concussions.  I remember that the first time I looked at it, it didn't seem to be very applicable to Ambria's situation.  But something told me I needed to go back and find that article and read it again.  It said all the same things I remembered, but being further into Ambria's condition and the things I had learned about over the past year, it seemed like there might be more there that could possibly relate to Ambria and her condition.  So I went further and visited the website of the clinic (Cognitive FX).  Her biggest symptom was the horrible Migraine pain.  But she also was suffering from the emotional and cognitive symptoms mentioned on their website.  I decided to contact the clinic and ask specifically about Migraine.  I received an immediate response with some video links to patient testimonials of female teen athletes who had come to the clinic for treatment.  As I watched the videos, the tears just flowed.  When I listened to the girls tell about their injuries and their symptoms, it was as if Ambria were speaking.  And then the mothers.  When those moms spoke I wanted to reach into the computer and hug them.  They WERE me.  The things they spoke of feeling while watching their daughters suffer, and all that they had seen them lose or have to give up.  I knew this was the next step to try and find some help for Ambria.  I went to Jeremy and we talked about it, and prayed about it - and I'm not exactly sure how strongly he felt that we needed to do this, but at this point he was ready to try anything.  "Let's do it." he said.  He told me that we'd figure out how to pay for it somehow, and to just make the appointment.  It took some convincing for Ambria.  She was tired of trying things that didn't work.  The treatment wasn't going to be pleasant.  And being Ambria, she worried about the financial burden on our family.  She just didn't want to go to all that expense, and through the pain of the treatment just to have it not work.  Of course, we didn't need her approval to move forward, but we wanted her to go into it with a good attitude and give it her all.  Again her best friend was there to help convince her that this was worth a try.  And not just worth a try, but something that was worth putting our hope into.

We went to the consultation and were told that Ambria was a perfect candidate for this treatment.  We got it all set up, and were able to get her started much sooner than expected.  Which was good - but gave us much less time to try and save up the money.  We weren't insured at the time, and the treatment is currently not covered by insurance anyway.  We have the most amazing people around us.  One friend suggested we do a fundraiser auction like she and her husband had done to help pay for adoption expenses.  She offered to do whatever we needed help with.  We had only a short time to throw it together.  But so many amazing people (family, friends and friends of friends) came forward to offer services or products for the auction.  Several local businesses that we wrote to sent us items to auction off as well.  We had such good and generous people - some who knew and loved us, and some who just heard about it from friends -who bid on the auction items and it was a huge success.  And several people just loved us and quietly slipped us a donation to help pay for her treatment.  We were overwhelmed with the love and generosity of so many people who wanted to see Ambria get some relief from her pain. With this, added to what we were able to set aside from our own income, we were able to pay for her treatment. There are no words to express our gratitude.

Ambria went through the week-long treatment.  I'm going to do a follow up post with specific details of what the treatment entailed, because there's too much and it deserves a separate post of it's own.  Treatment was difficult, as expected.  And there were moments where the tears fell, and she just wanted to give up and go home.  But she's a fighter, and she worked hard and did everything they asked of her.

By the end of the week, her follow up tests showed significant improvement from the tests performed before treatment.  And she was noticing significant improvement in her cognitive and emotional symptoms.  The headaches were still a problem, but she felt that there was an improvement in how quickly she was able to bring the pain under control.  And there was a significant improvement in her ability to tolerate car rides without her pain getting too unbearable.  It was a start.  She said that she definitely felt that the treatment had helped.

We returned home and she was able to go to almost all her classes every day for the final 6 weeks of school.  Before treatment she was only able to make it to 1, sometimes 2 classes, and only a few times a week.  She had been sent home from the clinic with exercises she needed to continue on her own, as well as returning to the clinic once a week for some follow up on working out her headaches with neuromuscular therapy for about a month after.  As weeks went by, and summer came, she kept improving and improving.  We were still very anxious for what kind of toll high school would take on her condition.  But fall came, she started school, and although it was a struggle at times, and she had a couple setbacks with pain and cognitive issues, she pushed through, continued her at home exercises and improved week by week.

She is not able to play soccer anymore, or any sport that has a high risk of head injury.  This was something she did NOT overcome with a very good attitude.  But she grudgingly gave tennis a try.  She has grown to LOVE it and can't wait for warm weather to return so she can get back on the courts.  Tennis and being out in the sun was hard on her at first.  But she improved each week and is steadily gaining her athleticism back, as well as building up more of a tolerance for sunlight.

She went in for treatment just under 9 months ago. A year ago she couldn't step out in the sun at all without developing an instant migraine.  She had to wear dark, ugly (her description) wrap around sunglasses and the sun STILL gave her a headache. She couldn't do anything physically exerting without it triggering a migraine, and car rides were torture. Today she has played a full season of tennis on her high school tennis team (with plans to take private lessons from her coach in the spring), she has been able to return to wearing her cute, stylish aviator sunglasses and even occasionally forgets them and is able to survive the sunshine for a short time without glasses.  And, if  the driver is aware of her situation and drives carefully, she is able to tolerate most car rides without getting a headache.   And her personality.  MY DAUGHTER IS BACK!  The funny, spunky, sassy, acting crazy no matter who's watching, girl I used to know is back.  Her laughter fills the house again.  Her antics make us roll our eyes but secretly our hearts are bursting with joy.  She is back to being a light to her friends and peers in school.  Her confidence and outgoing nature is returning and we are SO BLESSED.

As I mentioned previously, our gratitude runs deep.  For our wonderful supportive and loving family.  For everyone who loved us, prayed for us, helped with the financial burden of her treatment, checked in on Ambria or helped in any of a million other little ways.  I also can't express enough how thankful we are for the wonderful people at our amazing school who did everything to help her over the better part of 2 school years to be able to be successful in her classes and keep up with her grades and be able to earn all her credits and move on to high school this year.  There is no way she would be where she is in school with all the time she missed, if it weren't for these devoted and amazing people.  We're forever indebted to the wonderful team at Cognitive FX who treated Ambria, made us feel like family, and helped her heal in all ways.

Most importantly I'm thankful for a loving Heavenly Father and Savior who held us up through all of it.  There is no way we could have faced this without our faith, and knowing we could turn to our Heavenly Father in prayer for strength and guidance.  I KNOW we saw many tender mercies, priesthood blessings fulfilled, and were part of a beautiful miracle of healing because of the love of our Heavenly Father. I am grateful for this trial, the people it brought into our lives, and the ways we were able to learn and grow.

First day of High School

Little sis was her biggest fan.

Receiving the coveted "Princess of Poison" award - player who won the most rounds of Poison (one of their drill games they did each practice).

Photo shoot for her brother for his missionary application.

Wednesday, January 4, 2017

Called To Serve

Detroit, Michigan.  That's where my boy will be serving for the next 2 years.  Perhaps he won't be right in the city the whole time. Perhaps he won't spend any time in the city at all.  But the Michigan, Detroit mission is where he has been called to serve.

I don't think it has completely hit me yet.  It's not really possible to comprehend the reality of Kaden being 1,600 miles away for 2 solid years with only written contact except for the 2 times a year he will be able to call/skype home.  Like, I literally can't imagine what it will be like or how it will feel.  I'm sure it's going to be hard at times, that I'll miss him like crazy and just want to hear his voice.  We've always had a close relationship and we talk about anything and everything.  It's hard to imagine only speaking in person 4 times over the next two years.

But there is absolutely no place I'd rather have him be, and nothing else I'd rather have him doing than serving the Lord as a missionary for The Church of Jesus Christ of Latter-day Saints.  When I think of the people of Michigan that he will meet, and love and serve, I'm overwhelmed with love for people I don't yet even know.  Because there are people there who need my son.  Who need the love and service he will give them.  Who need to hear his testimony of our Savior, Jesus Christ, and who need to hear the gospel message he is going to share.  I'm so proud of my son for his decision to serve, and grateful to be blessed with such a good young man to call my son.

Here is the beginning of a blog post I started when Kaden graduated last June:

"And just like that.  It's over.

High school, I mean.  For my son.  I am officially the mother of a graduate.  It's kind of surreal.  It's like he was this tiny little brown bundle of curious energy, and I blinked, and now I have this funny, talkative, SMART, kind young man on the verge of taking life by the horns and doing something amazing.

I honestly do not know how he got to be so good.  He is good to the core."

I never finished that post.  But I still remember vividly the emotions I was going through at the time.  The sentimentality.  The pride.  The overwhelming sense of not being able to slow down time and have my boy be a kid for just a little longer.  And now here we are, 6 months later and I have a young man ready to travel halfway across the country, and live among people he's never met, and share the gospel with all who will hear him.  How did this mom get so lucky?

I feel so many different emotions.  I feel a little bit of apprehension - he's never been away from home for longer than a week.  But I also feel comfort in knowing that he'll be in the best hands.  He'll be looked over by a loving mission president, and his wife, and he'll be surrounded by other young people who are out doing the same thing he is doing.  What an amazing support system I have to help me take care of my son while he is away from home.  Above all, I know he is in the Lord's hands, and that is the most comforting of all.

I feel more than a little bit of excitement.  I've started learning about the history of Detroit, and the state of Michigan, as well as the current social and economical environment.  It's so different from the way Kaden has grown up, and what an amazing opportunity for him to learn and grow, as he serves the people of Michigan.  I can't wait for the experiences he's going to have, and how he'll grow as a person and in the gospel.

I feel completely overwhelmed.  34 days.  That's how much time I have to get everything he needs, and have him ready to go!  He enters the Provo MTC on February 8.  ACK!!

I feel proud.  I'm proud of Kaden for his desire to serve the Lord.  And for his willingness to set aside his own ambitions for 2 years, and dedicate all his time and energy to this service.  Again I ask, how did this mom get so lucky?

Most of all I feel grateful.  I feel grateful to know of the truthfulness of the Gospel of Jesus Christ.  To understand his plan of happiness, and be a part of something so joyous.  I'm grateful for all who have influenced Kaden's life for good over these past 18 years.  For family, teachers, leaders and friends.  All have played and continue to play such an important role in helping Kaden become who he is meant to be.  I'm thankful for my Savior and his atoning sacrifice, and what it means for me and my family on an eternal scale.  And I'm just grateful for the love and support from those around me as we get ready for this grand new adventure in our family!

Tuesday, January 3, 2017

Happy New Year

Well here we are.  2016 is a thing of the past.  And what a year it was for our family.  In 2016, we finally saw some light at the end of the tunnel for Ambria's suffering with Post Concussion Syndrome.  MaiLee became a teenager and Brielle entered double digits.  Hollyn changed from toddler to little kid and her spunk keeps growing as well!  And Kaden - Kaden leaves in 35 days to serve the people of Michigan for 2 years. He will be serving in the Michigan, Detroit mission and we are excited/proud/sad to see him go/excited to see what he accomplishes, and every other emotion in between!

I feel so ready to let go of 2016.  I think it holds the record for most tears shed by this mom!  Yet when I look back on everything that has gone on this past year, I see that I have so very much to be grateful for.  And I am ready to find the JOY in 2017.

I'm not sure why I've had such a hard time finding it. The joy in life, I mean.  Just tired and overwhelmed, I guess.   But for this new year, my single resolution for the year is to come closer to Christ.  To know Him better.  To study His life, learn about and understand Him better.  I know in doing this, I will be able to find joy.  Joy for myself, and for my family.  Joy in the gospel.  Joy in motherhood.  Joy in being a wife and homemaker.  Joy in being a friend and neighbor.  It all comes back to drawing closer to my Savior, and becoming more like him.  Treating others as he would. Seeing my children, and everyone around me through the the Savior's eyes and understanding who they are as children of God.

I hope to share more of my journey this year on the blog.  I really miss how cathartic it can be!  It's just so hard to find the time!  But I'm going to try to squeeze in more regular posts.  I also have a great update on Ambria and her health, as well as more fun adventures with my other kiddos.

I hope everyone had a wonderful holiday season and is ready for an amazing and JOYful new year!

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