To be writing this post has me filled with so much emotion. The last time Hayden went in for surgery – he was a mere 15 months old. At that time of our lives- we were living in fear of the unknown. He hadn’t started to walk yet- a simple milestone for one year olds to accomplish- had my husband and I in a panic. Every time Hayden tried to stand up – we made him sit down…We were afraid of him falling down. Having his port placed was a decision that was not made lightly. We knew that it would allow us the freedom to infuse him on our own – Instead of heading to the hospital because he had a bleed. But it also came with a whole host of other issues – Having a direct line to the heart was a scary concept for new parents to grasp. Were we opening the door to infections??? What could happen if we didn’t catch an infection quick enough??? Ohhhh , how I will never forget the day the HUGE box of medical supplies arrived. It knocked the air right out of me and brought on a new set of tears and fears. Syringes filled with saline, heperin…needles.. BIG ONES and small ones and finally the precious vials – vials filled with the medicine that will replenish his body with factor 8 – the factor that allows us to clot. In a desperate attempt to relieve myself from the severity of our new reality – I quickly reminded myself of all the ladies throwing Botox parties – and how their houses were filled with syringes as well…just ones filled with silicone.
His port was placed and soon we realized how this decision had now opened the door to a newfound freedom . The freedom to travel – the freedom to play – the freedom to live.
It hasn’t been easy, It hasn’t been perfect but we have had solid family members and friends that have stood beside us and held us up when we both wanted to crumble. Trips to the ER as Hayden was battling a simple flu – for fear of blood infections. Two years of having to hold Hayden down while he screamed – I held him down and as tears streamed down my face – My husband learned the art of a steady hand and the precision of the perfect stick.
So today – as I write this post – My boy will be having his port removed. This is a monumentous day for our family. So while I was Blogging in my head … which is what I do more often then blogging on my website ( a resolution to be better is on my list) – It occured to me – how enriched my life has become because of his hemophilia. A diagnosis that was life-changing, but life-changing for some of the most amazing reasons.
Life Lesson #1:
Before Hayden was born – my husband and I got into a heated exchange A.K.A Argument. While driving down La Cienga in LA. He annouced that his future son will play football…. Those who know me – know that at 27 ,I came to terms with my complete DISDAIN for the sport that has men grunting like cavemen. To say that I despise football is putting it lightly. … Ok I guess – I don’t mind watching it if I am at a bar, a party or our friends suite at Cowboys Stadium…. anyway – back to the original topic. When the reality of Haydens diagnosis and what that meant for my husbands future football star sank in. It taught me a valuable lesson. I gave life to a beautiful son and I am here to guide him but I am not here to mold him into who I want him to be. I will teach him to be kind, I will teach him to believe in himself, in his dreams and he will never doubt the amazing amount of love his dad and I have for him. BUT Hayden will follow his own heart, his own love and his own passion to be who HE wants to be.
Life Lesson #2
In the world we live in we tend to look for other people worse off than ourselves to make ourselves feel better. As I struggled with my sons diagnosis – I searched the internet for stories worse than mine … someone who had a “harder” life , a more “devestating” diagnosis. A couple of months later some close friends newborn son had to go in for a hernia surgery – and like a ton of bricks it hit me – I soon realized that they in turn looked at our beautiful boy and said…”Well at least it isn’t hemophilia” . I felt physically sick – and immediately changed my mentality. The reality is we got a dealt a crappy card… and it was hard… and it was ok to be sad…no longer did I look at other peoples lives to try and feel better about my own. I owned my crappy card… and soon realized – that my “hard” wasn’t the end of the world it was just the beginning of a different and better world.
Life Lesson #3 –
What do they say – “Laughter is the best medicine” – When Hayden was in the hospital getting poked and prodded – I remember thinking my only job as his mom was to get him to smile as soon as the needle poke was done. In the beginning – I was so afraid – that if Hayden cried a lot because of the hospital visits – that it would change who he was destined to become. Maybe those tears would make him sadder, make him depressed. I was determined to make sure that his hemophilia wouldn’t define who he was. So as soon as the doctors finished their “job”.. I started mine.. Erase the memory of the tears with the sound of laughter. I did what I could to make my boy smile..to get a chuckle.. or better yet – get that laugh.. the one that even today – melts my heart. I have carried this lesson over to my daughter. Born with a different temperment then Hayden – Emerson – is a little … how would you say…moodily stubborn. I am doing my best to get her to laugh ALOT – I am doing my best to laugh with her…I truly believe a person who knows how to laugh from their soul will live a happier life.
Life Lesson #4:
Finally – I have learned not to borrow tomorrows bad .. when today is so good. Simple concept but it has allowed my life to feel peace and happiness. How quickly our lives were turned upside down when the doctor walked into the NICU and said one word …Hemophilia. Upon Haydens diagnosis and having the internet just a fingertip away – we did research……. ALOT of it. Soon the fears of inhibitors, blood infections, brain bleeds was streamed into our conciousness. Our bellies were filled daily with anxiety as we struggled to take it all in. Two years into the diagnosis – my beautiful mother-in-law was visiting us in California and again in a blink of an eye and a ring of a phone and our lives changed when we found out her Cancer had returned. On that day- I got it… and decided to walk away from the fear. Our lives are simple and good and how easily you can lose sight of that if you worry about what tomorrow may bring. We will all have hard days, We will all be faced with struggles that seem almost impossible to recover from. That is everyones truth. But today – is good… and I will take today in all of its simple glory.
Today – I realize that I am the mom that I am , the friend that I am , and I am the wife that I am… because of Hemophilia. Hemophilia took my perspective on life and changed it and made it better.
Thanks to the people who sent gifts, e-mails, and words of support. We continue to be blown away by the love we have received.
We surprised Hayden with a new Star Wars themed room when he got home from the Hospital. Poor little guy has been sleeping under a birds comforter since we moved the guestroom bed into his room months ago. Thanks to Kelly Alvarez, the best assistant EVER, for picking up the balloons and putting together his room… and for snapping the photo of me taking a nap with my favorite little man.
Renee - One of the most gorgeous sets of pictures I have ever seen…not just because the photography is so amazing..but so it the boy, the mom and the beauty of your story!
Sam Sarsilmaz - That was absolutely a beautiful post. Thanks for sharing Liz. What an amazing family you are. (teary eyed)
Wendy Rakvica - absolutely heart wrenching and beautiful at the same time. my eyes filling up with tears as i look at these beautiful photos and the story behind it all. i cannot imagine all of the heartache, tears and anxiety you’ve had to deal with all of these years. but like you said it has turned you into the amazing Mom that you are and eventhough Hayden was born with this awful disease like you said today is good and you have to look for that in everyday cause you never know what tomorrow will bring! XOXO!
christy linden - wow! beautiful! Thank you
Amy Flint Catherwood - Beautiful story Liz. It sounds like surgery went well for Hayden, but I can only imagine the initial shock of his condition when you first heard the news. It is crazy how the beginning of a new, beautiful family can be so amazing, yet so scary all at once. I had Dylan and wad blessed with a healthy boy. Two months later, my brain tumor was diagnosed and turned my whole world upside down. We live, we learn, we love. It is all we can do. For Those of us who go through a family health crisis at an early age, it transforms us forever.
Blessings for Hayden and your family.
Love,
Amy
Laura Elliott - Liz,
It is inevitable that good and bad will happen in all our lives. You and your husband are a powerful, shining example of the life question – how do we react to what is given to us? I am in awe of your insight. You have such amazing gifts, not only in your photography, but in your writing. You should consider sharing this story with many others that have felt your pain and joy of a child’s suffering and recovery. I am honored to have watched you grow from a child to a teenager, then to witness this metamorphosis into a beautiful mother, wife, and talented artist (even tho’ I missed the years in between). I feel blessed to be a distant observer of your achingly touching, love-filled life. Thank you so much for sharing….Love you, Laura
Charisse - Liz,
Thank you for sharing your inspiration, your story with us. Your attitude is beautiful. Our children look to us and our reaction often times tells them to be happy, scared, concerned….Even in the darkest hour, the hardest moments, you put a shining light in your son’s life. The way you described making him laugh right after he was getting poked on my the medical staff was amazing and took such strength!
“MAY THE FORCE be with you Hayden”, always.
Merry Christmas,
Charisse
Heather Cisler - Hi Liz, I had no idea this was your story. The hardest journey a mother can ever embark upon is the one that begins with a sick child. It is beautiful to see your ability to recognize the good hiding in all that bad and to maintain a generally positive spirit. Here’s hoping for many years of health for your family!! God bless you, Liz!
Kathy - You are amazing! And your children are beautiful. Thanks for sharing Hayden with us.