Thank you!!!

A week ago, I got a phone call from my mom.  She was in tears.  She called to tell me that there were about ten ladies out in front of our house when she pulled up, weeding our very-weedy garden.  I was so overwhelmed with gratitude and love, but I told my mom that I was not at all shocked; the goodness of the people in our neighborhood and ward is astounding.  We have received their kindness and goodness over and over this year.  And you amazing sisters and family and friends never seem to get tired of serving!  What Christlike examples you all are to me!  My mom said she didn't know who any of the ladies were, and I was disappointed that I could not thank you, but then I realized that some things are meant to be anonymous.  So I hope that this simple, blanket thank-you is enough but not too much.  Your service to our family has really touched our hearts and helped us to feel the Savior's love.

The notes and texts you sent were so appreciated.  The gifts for Jake were very kind and thoughtful - and he loved them!  The meals you provided have been a huge blessing.  The time you spent with our children while we were gone made all the difference.  They were so emotional to be without their parents, but having grandparents, aunts and uncles, and friends who listened to them, played with them, took care of them, and prayed with them really helped them get through.  Not to mention, it made things so much easier on Matt and me knowing that they were in good hands.

Thank you, Granny, for being willing to fly across the country to help take care of Hyrum so we could spend all our time with Jake those first few days after surgery.  And thanks to Hyrum for being a happy baby boy.

Thank you to those kind Saints we met in Minnesota.  You were all so eager to help us out, even though you'd just met us.  Thanks for that stick of butter, for those casual but encouraging conversations, for the offers to help with Hyrum, for the visit from the resident anesthesiologist, just as Jake was about to go in for surgery.  Before the surgery, we met with a social worker and told her we were LDS.  Her response was, "Mormons really know how to take care of each other, don't they?"  

Thank you to all you Minnesotans who welcomed us to your town with open arms.  You were some of the nicest, friendliest people I've ever met.  I found myself saying, "If I didn't already live in the best neighborhood in the world, I think I'd want to move here."  Thank you for all your charitable donations that really helped us out in our time of need.

Thanks to the incredible doctors and nurses who took such good care of Jake. It was comforting to know he was in good hands.

Thank you to the Ronald McDonald House, who not only took us in and let us stay until we left, but provided everything we needed for a pleasant stay and then some. Thanks for the food, books, blankets, crafts, activities, encouragement, and helpful suggestions. The Ronald McDonald House's slogan is "The House that Love Built."  Every time I read that, I could feel the love.  It is amazing to see the miracles that occur when people give freely to help one another - and the greatest miracle of all is how it touches and changes our hearts - both those who give and those who receive. 

Thanks to all of you we met at the Ronald McDonald House.  You have truly changed our lives for the better and given us hope, and we hope that we have done the same for you.  

Thank you, Jake, for showing so much courage in the face of so many tough and painful things.  You are my little hero.

Thank you, dear Matt, for all you do for our family - for the love that you show me and our children.  Thank you for fighting every day to provide for us and make us happy - and I know that most days now are a fight.  You are amazing.  Thank you for leading the way in reaching out to others, helping those in need, and expressing gratitude.

And especially, I want to thank my Father in Heaven, who has watched over us through our entire journey.  He has let us know that He was with us every step of the way.  And He didn't just help us to make it through - He spoiled us with love, with kindness from all of you, with good health, with opportunities to learn and grow in the gospel, and with a miraculous surgery and recovery for our little guy.  We are so blessed!  

Thank you all!!!  We love you!!!   

Laura

What has HCM given me?

I recently joined the HCM parents' Facebook page as I am preparing for little J's upcoming surgery. On this page, there are many questions posted that came from the HCMA website.  Two of the most recent were, "What has your/your family's diagnosis of HCM taken from you?"  and "What has your/your family's diagnosis of HCM given you?"  The first question had many answers - many sad stories that touched my heart.  But the second question, asked over a month ago, still had zero responses.  That got me to thinking about how I would answer that question. . .What has my family's diagnosis of HCM given me?

Hypertrophic cardiomyopathy has given me the hardest trials of my life thus far, hands down.  It has forced me to do and live through many things that I would never have chosen for myself, but in the process, it has blessed me in so many ways. 

It has given me empathy for people who are truly suffering – whose lives are falling apart at the seams.  I’ve been there; I’ve lived through it more than once; and it makes me want to show the kind of love I needed at that time to others.  

It has given me new friends, as neighbors and family members have reached out and shared love and compassion in countless ways.

It has shown me that I am much stronger than I think I am.  Because my husband is afflicted with this disease as well, there have been times when I have had to pull the weight for our family almost all on my own and be there for both, or either, of my heart family.  With five small children, that is no easy task.  But I have been amazed at how the Lord has blessed me to be able to do it.

It has given me a new level of courage to face adversity head-on.  I have watched the experiences of both my son and my husband and just been amazed at their courage and perseverance.  I always refer to J as my “tough kid.”  He has endured so much pain in his short lifetime, and yet, he is so happy and resilient.  He still loves doctors and associates them with suckers, stickers, and stuffed animals.  I tried to explain his surgery to him in very basic terms the other night, and he didn’t act at all afraid.  Instead, he was pumped up for the airplane ride!  If he can be brave through all of this, then so can I. 

It has given me a closer relationship with and deeper love for my immediate family, and a stronger connection with my extended family.  It has helped me to forget about all the petty little things that might cause contention, and embrace the good in each member of my family.  It has helped me to learn to embrace the good days and really soak them in, as they are often few before a new storm rolls in.  But even in the midst of those storms, we have each other.  We have so much love, it hurts.  And I wouldn’t have it any other way.

And finally, it has given me a closer relationship with and greater love and appreciation for my Savior, Jesus Christ.  He has been there all through this rocky HCM journey – to lift me up; to give me peace; to strengthen me beyond my own capacity; to teach me truth; to help me love; to help me overcome; and even to send me some sweet miracles.  Without His atonement, there would be no positives about HCM, but because of Him, our family has gained some pretty amazing things.   

Keep Practicing

It has been a long time since I last posted, but not a long time since we last endured the trials associated with hypertrophic cardiomyopathy.  In fact, there have been times when I knew exactly what to write but had no time to do it because of said trials.  But those times have long since passed, so I am going to pick up at the present, and if any of my heart friends want to do the same, please do!!!

Three days ago, after enduring the most difficult summer of our lives, mainly because of my husband Matt's HCM and related issues, we received the news that our little J will need to have his surgery in about two months.  I was grateful the news came at a time when Matt was feeling significantly better, but I felt like our time of rest between major trials was all too short.  I went for a walk in the cool morning air of this beautiful valley we live in, and pondered over the Lord's timing in all of this.

What came to my mind was the time I forgot how to ride a bike.  It is embarrassing for me to admit it.  The few people that knew about it said something like, "Is it really possible to forget how to ride a bike?"  Why yes, yes it is.  I am living proof.  When Matt and I were first married, he got me an old bike so I could ride to school from our new apartment, but I couldn't do it.  I tried a few times and couldn't get anywhere.  It had been too many years since I had attempted to ride a bike, and I was too embarrassed to re-learn in front of all the people in our complex.  After we moved to Heber, I vowed to get a bike and learn to ride again in a place that didn't feel so much like people were watching me all the time.  In time, it all came back to me, and, while I am not an expert, I can now get around on my bike with my kids, and I really enjoy it.

A similar experience I thought of this morning was when I forgot how to play Waterfall by Jon Schmidt.  It was one of my favorite songs in high school, and I used my talent for listening to learn to play the whole song without any written music.  But over the course of the busy years that followed, I played the piano less and less often, and I forgot how to play something that meant so much to me - something that had been mine.  One day, I overheard my dad telling someone how I had learned to play it all just from listening to it, and I felt unworthy of that praise.  I committed to learn to play it again - and this time I used the music.  It was hard, and I'm still not terribly proficient, but I can play it.

Is it possible to forget something we've learned, something that seems like second nature or is very dear to us?  Yes, it is.  Is it possible to remember it again after we've forgotten?  Yes, it is, but it takes a lot of work and dedication.  Is it easier to keep up on a skill that we value by practicing every day?  Of course it is!  So what's my point?

Trials require us to exercise faith, and in the process we learn a lot of tough lessons.  There are some lessons I've learned this year that I don't want to forget.  I don't want my faith to decrease because it is not being pushed and tried as much as it once was.  And only the Lord knows the magnitude of the trials that await me in the future and the faith I will need to overcome them.  So I will trust that these exercises in faith will never cease, and I will try to embrace them and be grateful that at least for now, I won't forget.

Wishing You a Peace-Filled Christmas

"Merry Christmas!"

"Merry Christmas," I said to the lady at the check-out counter.  I forced a smile, feeling the irony of the words hanging in the air as I grabbed my bags and headed out to my car.  Instead of bringing joy like they normally did, these recited and all-too-prevalent words brought pain.  It was Christmastime, and I wasn't merry.  Merry means joyful, even jovial, but with my little baby about to have open heart surgery,  my heart was continually aching and worried.

I understood the proverb that there is a time and a season to everything in life.  Some Christmases are merry; some are not.  Some have the potential to break our hearts.  But I also believed that the spirit of Christmas is real--tangible--and it comes because of the Savior of the world.  I wondered how that Spirit could touch my heart this Christmas, if there seemed to be no room for joy there.

I found my answer in a few simple Christmas traditions.  With four little kids, we couldn't just do nothing for Christmas, so in a way that was a blessing.  They helped me to press on when I didn't feel I could.  The first thing we did as a family was service.  The things we did were simple, like bringing a plate of cookies to someone who was lonely, but as we did those things that we knew Jesus would do at this time of year, the most amazing miracle happened:  my heart was not troubled, even if for just a moment.  I was filled with peace.

I also found peace in leading the children in our church congregation in singing Christmas hymns.  Their angelic voices and hope-filled faces brought tears to my eyes and comfort to my soul.

The last tradition is one that I did with my own family every Christmas.  We have 25 pictures of the Savior's life and ministry, death and resurrection, and each day of December, we talk about a picture and then hang it somewhere in our house.  When my heart was heavy, I would see these pictures on the wall.  I would look into the face of my Savior and hear these words:


"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid."


"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world."


"Glory to God in the highest, and on earth peace, good will toward men!"


I left the pictures up until after J's surgery, and two of the pictures stayed up the whole year:  A picture of Mary and Martha with Jesus, and a picture of Jesus on a ship, calming the storm.  The blessings of peace I felt were so real.  In those moments, I knew that everything would work out--that even if they didn't work out the way I wanted them to and the pain seemed too great to bear, the Savior would bear my load with me, and someday, all would be made right.  This blessing of peace and assurance was the greatest gift I received last Christmas.

To all who may have a heavy heart this Christmas, for whatever reason, I wish you a peace-filled Christmas.  I know for a fact that moments of peace can come to all, in whatever circumstances, if we will seek after the One whose birth we celebrate--the Savior of the world.

The Birth of Friends of the Heart

Some of us, like my sweet son, J, are born with big hearts.  Others need "stretching experiences" to help our hearts grow and learn.  If you couldn't guess, I am one of the latter.  And J's genetically large heart has helped me to discover the depths of my own soul.

Last Christmas was a Christmas unlike any other.  It was a time spent pondering, aching, praying, and preparing the best we could for tiny J's open heart surgery, which was scheduled just a few weeks after Christmas.  My heart was full of a million new emotions which I cannot even begin to describe.  I felt longing, anxiety, fear, peace, joy in the moment like never before, and gratitude, but most poignant was the ache I felt for my child – the ache of dreams that would not be realized, of a future different than the one I'd always envisioned, of the possible chance of losing this child in his youth.  Even though none of these were yet a reality, I felt like something great had been lost.

When I opened up all the boxes of Christmas decorations, I discovered a simple ornament I had bought at the dollar store the year before, thinking I might give it to one of my children sometime.  It was a blown glass angel holding a heart.  I felt this ornament was a love note from the Lord, as He had foreseen where I would be that Christmas.  I knew that that ornament was for J.  I gave it to him for Christmas with a little note:

"This angel ornament is my special gift to you this Christmas, as a reminder that you are an angel to your family with a big heart.  It is also to remind you that angels will be with you as you go through your surgeries on your precious little heart.  I love you, and your family loves you!  Merry Christmas!"

 

A few weeks later, we spent a lot of time in the hospital before and after J's surgery.  I felt like my heart was being stretched to its limit, and, as I looked around at the other babies and children and families that were there, I felt a great love and aching for all of them.  We met people we knew and people we didn't know in the cardiac ICU, and my heart nearly broke for them.  We didn't talk much, given our circumstances, but I feel like they will be my friends forever.  There have also been others among our family and friends who have had babies with heart problems since we found out about J, and I feel a special kinship to them.

When all was said and done and J had recovered from his surgery, I realized that this new stretching of my heart has given me empathy – feelings I never could have understood unless I experienced them myself.  And now, every time I hear of a parent grieving for a child, I feel some of that same ache I felt (and sometimes still feel) for J.  Over the months, I kept thinking of and praying for those sweet families with babies with heart issues, and the phrase "friends of the heart" has continually come into my mind.  I feel like our babies' hearts have stretched our hearts and bound them together in love.  More than that, I feel like this experience is something that needs to be shared, so other hearts can be touched by the goodness of the Lord.

This Christmas, I found a new tender ornament of an angel holding a heart, and I knew it was the one I wanted to share with these special "friends of the heart."  Some of these friends have grieved more deeply than I can comprehend as their little angels have been called Home.  Others, like us, have been blessed with the gift of another year of life.  Still others are waiting, worrying, praying – in the same position we were in last Christmas. 

 

I believe that these babies with physically imperfect hearts have amazing spirits and the power to bless hearts all over the world.  I hope that in sharing their stories, others will be able to find the gifts of friendship, hope, healing, and love and join our circle of friends of the heart.