When Hayden was born and we found out that he had bleeding disorder, I went into protection mode. For his first 3 years of his life – I wanted NO ONE to know. That sounds silly doesn’t it. But I needed to figure out how to raise my son to be strong and brave and since this was a new world for me – I didn’t want people to feel sorry for us or worry about him. A typical fear that people have is that he would bleed to death. I also knew that it was human nature for people to want to gossip about other peoples hardships and it disgusted me. I didn’t want my son to be the subject of that type of gossip. I needed his life to be normal….or maybe I was just wishing my life would go back to normal. I remember calling Children Protective Service in tears. I had just read an article that said parents of children with hemophilia are normally seen as child abusers b.c of the bruising that the children have on them. In tears, I pleaded for them to put my name in a system that would say the Hayden had Hemophilia and that his mom would never hurt a single hair on his body – for he was her life. They didn’t do it…and I cried the entire day . I came up with different ideas that would allow Hayden to grow up in a world where he didn’t think he was sick. Against the dr. suggestions we had a port placed before his first bleed. They wanted to see how he would bleed first. I couldn’t understand what the point was. Wasn’t it my job to protect him from ALL bleeds. We call his medicine powerboost since I decided that if we called it medicine he would naturally think he was sick. While holding my breath – I let him climb those stairs to the slide and hoped that he wouldn’t fall. We don’t use the word Hemophiliac. I personally despise the word. Hayden is NOT a hemophiliac. He is a little boy, with BIG BROWN eyes and freckles… and he has hemophilia.I have kept my fears close to my heart.. and allowed Hayden to be Hayden ..skinned knees and all. Well, we are now 6 years into this journey and I can’t begin to tell you all that I have learned. With only small speed bumps in the road, we have been blessed. I am now confident that we have raised a strong boy who is not defined by anything other then his sweet nature, silly laugh, and love of legos. With that said, soon we will be entering a new phase of this journey. Today we had his port checked out and it looks like it is coming to the end of it life span.We will be soon be removing his port and we (my husband ) will start to learn how to infuse him through his veins. To say that we are scared – is a complete understatement. Lets put it this way, It took two of us to infuse him for 3 years b.c he wouldn’t sit still for a stick to his port. By keeping our journey such a private part of our lives it is hard for people to truly understand what we go through. I asked Hayden if I could take his pictures today as I am ready to start sharing this part of our lives with everyone. You have seen photos of my boy and have seen his love for life. Today his tears fell and as I held his hand and put my head on his head- I whispered that he was the bravest boy I know …and that he is – My little lego architect.
Photos were shot from the hip – so not perfectly composed. I didn’t want Hayden to think I was documenting his sadness and fear.
Amanda Stearns Garcia - thank you for sharing something so personal and so beautifully.
admin - Thank you Amanda! As a blog writer yourself – you know how difficult it is to be so vulnerable with your emotions.I appreciate your support and kind words!
Laura Elliott - Dearest LIz,
What a touching and heartfelt story. You are all so brave and such good parents. Bless you and Hayden. Love you – Laura
Melissa - Liz….My heart goes out to you. One of my best friend’s sons has hemophilia, but they didn’t know until he was older..I think he was 7 or 8. I know what she goes through and I know how hard it is. These pictures are amazing….Hugs to you.
Melissa
Morgan - Love you girl! Can you believe that God chose YOU to be sweet Hayden’s Mommy? He is such a gift! XOXO
admin - I loved seeing you yesterday! Something so special about our friendship that I treasure. Despite our different worlds we live in… and that we rarely see each other – when we do – I feel like we are the best of friends. can’t wait for our slumber party!!
Tisha Ward - Very well said. I hope that means something coming from a fellow hemo. mom. I read it to Brian while I cried. The pictures ripped at my heart. I remember watching my little brother go through it too. You are an amazing mom!!!! I am so blessed to have found our friendship through hemophilia. Please keep me updated one everything. Ya’ll are in my thoughts and prayers. HUGS!!!
Love,
Tisha
admin - Love you Tisha! We both are raising strong boys who will make an amazing impact on the hemophilia world. Living examples that hemophilia is small part of a BIG FANTASTIC Life!
Helen - Hayden is an absolute jewel of a child. You and Dan are even more amazing than I already knew you were. Your family is so precious. What a beautiful story of a life to share with others! Love you.
admin - Helen – I love ya girl! You are an amazing friend to me – you always have been. So fortunate to have someone like you to lean on.
much love – Liz
Monica - Hayden you are my hero! Such a brave boy and so blessed to have such a caring Mother and Father to love you.
admin - Such kind words Monica! Thank you so very much!!!
xoxoliz
Amy Fogle - Liz, thank YOU for being so brave, and sharing your/his story with us. We adore Hayden (& your family) and feel so fortunate to have met you all thru FASST. You are an incredible mother, you and Dan are wonderful parents and Hayden is lucky to be surrounded by so much love!
The photos are beautiful and heart-wrenching at the same time. As a mother, we want to prevent any and all pain…..but you are teaching something extremely important, b/c pain is inevitable. You are teaching Hayden coping skills & those lessons will carry him thru & keep him strong.
admin - Amy – thank you so much for taking the time to read our story. Being a part of FASST for the last two years has been an amazing experience. We have made an effort to expose Hayden to swimming – as it is the sport of choice for kids who have hemophilia. Hiring your son this summer to teach Hayden was such a positive experience for Hayden. You have raised an amazing young man. Thanks for all of your love and support for my family!
much love – Liz
kelly - Oh Liz, what an amazing mom you are! I know some of the most accomplished men who have hemophilia and I think they are so strong because they end up being more compassionate, able to handle any of life’s situations, and are tough as nails! Can I share this blog at our next company meeting? God bless you, your family, and your gorgeous superhero son Hayden!
admin - Thank you so much Kelly! Given your profession – you see parents handle this diagnosis day in and day out. I would love to be a voice to any mom who is struggling through the diagnosis.I am here – Always. Feel free to use my share my blog with anyone.
Traci - My dear friend, you and your entire family are an inspiration. I love you for being you, for sharing your life and love for your family with the world (and not to mention, for being the vehicle to allow other families to share themselves & their love for each other with the world). Much love. ox
admin - Thanks T!!!!! Love ya lady and appreciate all of your support!
Amber Lussier - I’m in tears. Hayden is so brave (not to mention, extremely handsome). I’m so proud of you Liz! You are an amazing mama with an amazing family. I can only hope to be as caring, nurturing and strong as you.
admin - Thank you so much Amber. Parenthood can be tough… just gotta keep trekking. Hayden will make it through this next chapter – it just might be a tough couple of years.
Kelly S - Oh Liz….That broke my heart. I so feel for you. I could have written the first part about Pierce, but as you know, for very different reasons. We also kept Pierce’s diagnosis a secret to protect him….we don’t any more, and that is partly because I *needed* friends to lean on.
You are truly a phenomenal woman and mother. Hayden is so lucky to have you. He is a BEAUTIFUL, strong boy!!! Sending love <3
Kelly T S
admin - Hugs Kelly to you and your sweet family. We have been handed a card that challenges us every day. It challenges us to be better parents, better friends, and inevitably allows us to be more empathetic to other people who are faced with challenges. You my friend, are an amazing mom as I see you hold your son up with all of the love that you have. Our boys are blessed!
Much Love!Liz
Carl-Fredrik - Dear Liz & Labi,
You’re very brave to share this and it is heartbreaking to read and see. Hayden seems soo strong and so are you. You’ll all make this through and my prayers are with you. Please send my love to the rest of you family.
Love Carl-Fredrik
Ann - Thank you for sharing such a personal story. A year ago, my husband and I got custody of his then, 3 year old grandson. The first six months were great – and then he became very very ill. He was diagnosised with a rare but hereditary and chronic issue.
Between April 2011 and August 2011 – he spent 87 days at Childrens. Endless radiology procedures, four endoscopic procedures and one major surgery later – he came home with a PICC (cardiac catheter) for us to provide nutrition to him at night and an NJ tube for day feeding. I was absolutely terrified that we would make a mistake and cause him more serious concerns of an infection going into the bloodstream, etc. The doctor told me he was confident we could do it primarily because of the fear. The fear is what will make you good at it.
And in the end, he was right – the first couple of times, we were terrified but with each day it got easier…..and he got healthier.
He had his PICC removed last week and today he officially started his pre-Kindergarten. He gets to be a little boy again and run and play – with no worries of tubes or anything – we are so blessed
Ken S - Hi,
My sister shared this site with me. We just learned our son has severe factor 9 deficiency. It is a ray of hope to see you and your family living though this with heads held high. Thanks for sharing!
Ken and Family
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