I Wonder...

Yesterday was WorldAIDS Day.  It is a day set apart to remember those who are living with HIV.

During the late 70's and early 80's, "The CDC report provided strong evidence that AIDS wasspread by blood. Altogether, almost 5000 hemophiliacs were to become infectedwith HIV before concentrates were rendered safe, and more than 4000 of the estimated10,000 hemophiliacs in the US would eventually die of AIDS." 

Every time I read that statistic my heart hurts for all of the people affected…the individuals that passed away and their loved ones.

My brother was born in 1962.  When the AIDS epidemic hit the hemophilia population he would have been about 18 years old.  I often wonder what his life would have been like.

Would he have been infected and already passed away?

Would he have been infected and still be here?

If he was still here, would he have been an active member of the bleeding disorder community?

What would he have taught my sons?

How would my parents have handled it all?

There are so many questions I have.  At the top of my list would be a question to my mom…"Why didn't you tell me?"

I don't think it would have mattered if I had known about hemophilia or not because I wanted to have children.  It may have been best that I didn't know so that I wasn't afraid of what "might" happen.  I enjoyed being pregnant with both of my sons.

All I can say is that I am a blessed woman to have two amazing sons.  And I am filled with gratitude that their factor products were not compromised. 

And for those who were victim to the tainted blood supply…my heart will always be with you.

I will never forget.

To the Newly Diagnosed Parent

Last week I had the privilege of talking to a mom with a newly diagnosed baby boy with hemophilia.  Hearing her pain, grief and devastation over the phone was heart wrenching.  I wanted to reach through the line and give her a hug to reassure her that things would be okay.  Our conversation brought back those memories of what it was like when both Julian and Caeleb were diagnosed.

"What did I do wrong?"

"Where did this come from?"

"Will he survive?"

"What won't he be able to do?"

"Will I know when the first bleed happens?"

"Am I going to always be afraid?"

These are some of the questions that raced through my mind when Julian (now 19) was newly diagnosed.  I had no idea what hemophilia meant and could not grasp the reality of what seemed to be this huge "thing" in my life.  I almost forgot to enjoy my beautiful baby boy.

You are not alone.

When you are newly diagnosed I think one of the hardest things to do is remember to love your child in the moment.  Sometimes you can only think about life in days, hours, moments and even breaths.

One thing never changes…the love you have for your child.

You will figure out the rest…one breath at a time.

One Year Ago

One year ago yesterday (October 17th) Caeleb had his 6th port placed.  It has been the best port he has ever had.  His daily infusions are going well, his inhibitor is in the process of being tolerized and the best news is that he has not been in the hospital since then.

Life has been good.

Who knew that almost a year later I would give a TEDxABQ talk on living with chronic illness and holding on to hope!

It was one of the most difficult and rewarding experiences of my life.  I had always hoped that one day I would have an "idea worth spreading" and didn't realize that living with hemophilia would place this talk on my heart.

The realization I had while working on this talk was that my message is not just about hemophilia, it's about living with chronic illness.  Old, young, rare disease or one more common than others, being the caregiver and the one affected.

When you are a caregiver your life often centers around the other person's illness.  You are put on hold and finding your way back to a 'normal' place is difficult.

When you are the person with a chronic illness you often think, "How can I go on?  Will I ever get better?  I just want to live a 'normal' life."  You have to find the best in every day, sometimes every moment, and keep hope alive so that you can get to the "other side" of the bad days.

I want to live a life filled with passion and purpose and I think it's "such a time like this" for me to spread that message wherever I am able.  Hemophilia is yucky and painful at times and I hope my sons are learning that it is part of who they are.  Not all of who they are, just part.

I love them the way they are and I wouldn't change a thing.  They have taught me so much and I am a better person because of the struggles.  It sure looks like having this bleeding disorder has already made my 19 and 9 year old sons more compassionate than I ever dreamed possible.

Keeping hope alive while having a chronic illness is not easy.  You can let the illness get the best of you but the important thing is to move forward and give your illness the best you have to offer.  A chronic illness can destroy a lot of things but holding on to what is important in your heart and soul is something that can't be taken away.

During some of the rougher seasons of living with hemophilia, especially with Caeleb, I felt like life was crashing down around me. Fighting my way back to finding hope was some of the hardest times I have ever experienced.  Deciding that despair and hopelessness were no longer in my vocabulary was life changing.

Won't you join me?

Let's all become prisoners of hope!

My Bead of Courage Boy

I absolutely love the Beads of Courage program.  My son Caeleb "aka Christian" has participated in the program for the past few years at the University of New Mexico Children's Hospital.  He was selected as the 2015 Honored Bead Member for New Mexico!  This past weekend locations across the country were holding events to make beads and honor children.  Family and friends could watch the glassblowers make beads, children could pick up their "Dream Bead" that they requested before the event….it was fantastic.

Caeleb requested a "Sonic the Hedgehog" bead because "he is fast, mom."

The artists at High Desert Flameworks are just amazing.  They are doing wonderful work for our children with chronic illnesses.

When you struggle with illness and are in and out of the hospital as much as our chronic kids are, sometimes it's the little things that make a big difference during a hospital stay.  Caeleb would often be in tremendous pain or want to go home so badly but we had days left before we could leave.  His strands of beads signified his strength and courage.  We would hang his beads on his IV pole and they were always a talking point when someone would enter his room.

Thank you, Beads of Courage.  Your program made my son's journey a tangible beautiful process despite the circumstances.

A Red Ribbon

I made a red awareness ribbon and pinned it on my jacket.  I've worn ribbons for causes before, but this time it's different; more meaningful.  The red awareness ribbon represents many different causes but this weekend I will be wearing it for Hemophilia/Bleeding Disorders and AIDS/HIV. 

In early June I was selected as a speaker for TEDxABQ and my talk is about having hope in the midst of chronic illness.  One thing I have learned in the TED process is definitely how to cut a story down to the important points and Saturday I will deliver an 8 - 9 minute talk on the journey of my family with hemophilia and inhibitors, but one thing I had to make sure I mentioned, while I have this amazing platform, is our lost generation to HIV/AIDS.  I didn't realize how important it would be for me personally.

I had an older brother who only lived for five days after losing his life to complications from a head bleed.  I don't know if my parents or the doctors in that small, South Texas town knew what was happening to him but maybe if they did my brother would still be here today.  Perhaps he would have been infected with HIV, developed AIDS and been one of the many who lost their lives, or he may still be here today, living with HIV and joints that are a terrible mess.  Regardless of the possibilities I hold this generation of men with hemophilia close to my heart in a way I never understood when my now 19 year old son was little.

It is our responsibility as a bleeding disorders community to keep this legacy of the1980's alive.  No, we don't want to "dwell" on terrible things, but this was real and vicious and affected many, many lives.  I am so grateful that both of my sons are doing well.  We have definitely had some horrific times with hemophilia and inhibitors but on the other side of the nightmare is hope.

I know many who are affected and reading this may be in the middle of the nightmare and know that there are many who have been where you are.  My hope is that the "other side" of the nightmare comes soon.  I have learned to not take the smallest of things for granted and when big, wonderful things come my way, it's just amazing.

Saturday I am taking the entire bleeding disorder community on stage with me as I deliver a message of hope and awareness.  I will make sure you are not forgotten.