Saturday, December 31, 2016

Thank you - Defying the Odds in 2016

Thank you for the great 2016!  Your support keeps us going!  We're hopeful that we are moving into some of the most innovative years of our lives! Without you, we couldn't support the research critical to sustaining our children's lives! We're thankful that you read our blog, donate to our cause, and support our family through your thoughts! Thank you for the best 2016 could bring and Happy New Year to you all!

Warmest Regards, 

The Cherrstrom Family 

Monday, December 26, 2016

For Alex on Your Birthday

Your eyes are beautiful blue pools of pure water like those found on a mountain. Your eyes when you were a baby were striking. There was no sign of your struggle in them.  There was no sign of the battle that raged in your  body. No sign of sadness when you were in the hospital for Christmas after you were born unable to breath. No shock. No signs of strife. Just beautiful, hopeful, innocent pools of blue.

We took our queues from you. Never look back, move on from the struggle. We're past this, never to face a medical struggle again. You could breath. Your surgery was over it was time to live, and live well. Live a happy life with those beautiful beaming blue pools of beauty that radiated out of you. Eyes still so blue and beautiful.

Back then we had the gift of time, when you were diagnosed we thought we had time to help you to save you from what was to come. You were so young. You were two. We focused on making you well but maybe we should have done it all. 6 years later, there are no new treatments available to you. Nothing new. We thought we had time, and in time more would come to help you. So far it hasn't, there isn't a new treatment. In a way this is a bit unexpected for us, we thought you'd have access to a trial or to a new approved treatment. The reality is innovation is moving at the pace of a turtle, and there is nothing new, yet, for a variety of reasons. When you were diagnosed we focused on getting available treatment right away, some proactive surgeries that were really difficult. Maybe though we should have made it our lives' mission to fundraise because there is nothing new to help treat you. You are amazing and you are doing as well as we could hope for, but there might have been more had we known that nothing would be here for you six years later. Every day you show us that you are still there, working to optimize your life and not let us give up. You send us direct and deliberate signals that you are here. What you have access to helps you and sustains you but you need more.

We spent the holidays this year vacillating between being thankful and happy, but sadness that another year passes without a new way to help you. The hardest thing this year was when you celebrated your birthday but then days later seemed to not even know it's Christmas. Could we have worked on a picture schedule?  Yes but it was noticeable that you seemed to not want to engage in presents. You are there and we know it. You are brilliant, and your brain seems not to be effected yet other than being able to produce words, allow you to verbalize your thoughts.  We see your creative ways to make your needs known, and your amazing ability to put a puzzle together in mere seconds.  This year we begin the struggle again with your hearing. We see your skills they are still there, and they are growing. All is not lost yet.  Beyond those pools of blue, you're still there and that is glorious but we need to do our part and even better this year.

Many remark about how great you look but that's only one indicator of how you are still fighting for your life.  Time is still a gift, and time with you is our greatest gift. We must work to make every moment count, and work to help you because you are working so hard to help yourself.

Happy Birthday! Wishes for happiness and the healthiest year ever with more hope and action toward healing you! We love you, and admire every bit of your strength and perseverance. Let's fight even harder this year.  We feel so much love from you our blue-eyed boy! You are the best hugger!


Your Family

Sunday, December 18, 2016

On Your Birthday

Dear Nicholas,

You are fantastic and fabulous! We love the brightness you bring to our lives, and the enrichment you bring to our family. Every day we're inspired by you. You're so young and little but so brave and somehow so tough at such a vulnerable, sweet age. We know that your battles are too much and are starting to take a toll on you. You are never alone. We are always here with you. We know that better treatments or a cure would be so much better than anything you face today. It's hard to face your sadness every week when you find out it's treatment day. We too wish better for you.

The boy who loves his grandma, friends, nurses, teachers and neighbors deserves so much better. It isn't uncommon for you to be sad over the weekend missing one of your friends, your teacher, your bus driver or wondering what he or she is doing at the exact moment you're thinking of the person. You're just so sweet like that and if Nick loves you, you certainly will know it. Your heart is so full of love. Love for everyone. That love will carry you through. We just know it. Someone who loves so deeply cannot always have tragedy or sadness, you can't, not with that much love and hope.

The gift you give all of us is love and hope. This year is your year. We know it will be your best. We have the gift of seeing, hearing, feeling all that you have to give for you still have your skills. We have you. Hunter Syndrome has not taken these things from you. The gift is that we know all of you, and this really is a gift.  We get to know your personality, hear your words and see you flourish. This is the gift you give us; your family, your friends, all who know you.

For now, tell us when you're sad, and let us wipe your tears but spend most of your time like the happy, little boy you have become. Sometimes there isn't enough bacon to make the sadness go away but you always find a way to make us smile. Better will come with time. That is our job to make better come true. This is your year. Have the best one for you.

We love you dearly, sweet Nick, dearly.


Your Family