A Wave of Gratitude

A special thanks to my husband for this beautiful post.

This season is very special in our family for a number of reasons. We look forward to time off work, to being together, to play in the snow. It is a very special time when we give thanks for the incredible gifts that the year has offered each of us. We can’t help but feel incredibly blessed.

Today, I was made aware of a special blessing. A year ago, my youngest son looked at me and assured me that he was ready to step out of his wheelchair and go to school on his own two feet. While he walked with a noticeable limp, he has yet to sit in that wheelchair again. It has been an amazing journey to be an eyewitness to his progress.

Flashback to Christmas 2013, two years ago. Caeleb was in the hospital struggling through a very difficult bleed. While it was awful to sit in a hospital room during the holiday, I am very grateful for my wife for making it a holiday to remember; complete with a tree (it was tiny), a projector to watch our holiday favorites, and presents from Santa. The goal was to preserve and celebrate our family traditions, in spite of where we might be.

All of these memories hit me as I took my son to the Carrie Tingley Rehabilitation Hospital to begin physical therapy. We had not done physical therapy in a year. This time would be different. There are no longer issues regarding how much weight he could put on his leg; we would truly be developing muscles that had suffered as a result of being in a wheelchair. This was a different ball game.

When I took Caeleb into the facility, I was overcome with emotions. I remembered that the last time that I brought him into the building, he was in a wheelchair. What a difference a year makes. He and I practically ran into the center as we played one of those daddy and son racing games. We play those well.

As a wall of emotions seemed to pour over me, I saw our physical therapist. To my surprise, I started to break down in tears at her reaction to Caeleb’ s progress. The impossible truly became the possible. My son, once confined to a wheelchair, walked without any assistance. I took this moment as a miracle.

This Christmas, I really didn’t need a present under a tree, because the gift of gratitude was so incredibly powerful that I wanted for nothing. I could only respond over and over again how blessed my family is this year. We are all healthy. We all slept in our beds without hospital monitors beeping in the middle of the night. My son went outside and played in the snow.

This is what I know, the situation in which we currently find ourselves can change at the drop of a hat. What matters is what we share in the moment, knowing that with each passing day life can change on a dime. This year, I am grateful for Caeleb’s health. Last year, I was grateful that we left the wheelchair. The year before that, I was grateful for being together, even in the worst of circumstances; and the year before that I was grateful…

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.

19 Months

January 2014

Dad and “Christian” go to the local Monster Truck Rally.  Do you notice his knee is bent?  That was looking good for that day.  He was not able to get anywhere without the wheelchair.

February 2015

I am walking with both of my boys through the streets of New York.  Maybe slower than most, but no wheelchair needed.

August 2015

At the NHF Annual Meeting, we had the opportunity to take in a Rangers game.  Christian had never been to a major league game, so we went.  Of course I did not read the email with the instructions on which side of the stadium to park so we ended up on the opposite side.  Then we climbed every, single stair to the top suites.  My Christian did not miss a step (or complain).  We grabbed our food, sat down and the first Ranger we saw come up to bat in the 3^rd inning hit a home run!  It was poetic.  My son has been through hell and back with his inhibitor and at that moment I sat and gave thanks to God in a way I don’t think that I ever have.  “Thanks, God…Wow.”

A homerun may not be exciting for some, but even for this mama (who doesn’t “follow the volleyball”) I was completely blown away!  When I heard the crack of the bat and watched the ball go out of the park, the fireworks went off, the girls carrying the flags went from one side of the outfield to the other…..it was as if that moment was made for my son.

Our family has traveled this crazy journey of living with an inhibitor and it has taken us to dark, horrible places.  The journey is not over, but we have seen the other side filled with light and hope.

Today Christian started 4th grade.  

God is good.

What is Normal?

A post from my hubby today :)

I am sitting beside my youngest son.  As I write this he is fiercely doing battle with a dragon; sword in hand.  Yes, it is a video game.  I look at the clock with a complete awareness that he should be in school in about 8 minutes.  All is normal.  He and I sitting beside one another.  Him giving me expert lessons on the latest video game.  He is waiting in the Children's Specialty Infusion Unit at the University of New Mexico Hospital.  He will have his usual dosage of Xolair to combat an allergic reaction to the clotting agent that he must take to ensure little if any break through bleeding into the joints.

That's right.  That is my normal.  It may not sound like anything you may do in your routine, but it is what I know.  I smile when I hear that dirty "n" (normal) word thrown around, because I believe that it is all relative to our own unique situations.  What you may consider ordinary may stress me out.  Likewise, what I consider an average part of my day may lead others into a frenzied state.

Our journeys are all unique.  How we interpret and experience life is based on our own stories and paths.  We must be sensitive to each other's stories.  What may lead one person down one road may frighten another person.  We make choices based on the information that we have in the moment.  We may look back later and realize that our lives may have been a little less "complicated" had we chosen another path.

As for my son, he views these visits to the hospital (along with daily infusions) as a part of his life.  This is his normal.  He as no other frame of reference to the contrary.  This is what it means to be human for him.  It may not be for anyone else.  We should respect each other's paths.  Whatever that path may be.

Today, I give thanks for what I call "normal."  It means that life has been restored back to routine, and in that routine we experience life in its traditional form; whatever traditional means to us.  Our path is life giving and life sustaining.  It allows us to recognize the times when life is not "normal," but that is another blog post for another time.

May you live into your "normal" and celebrate it, for it is in the richness of tradition that you may be able to gather strength for those times when life is not so predictable and ordinary.  

Blessings,

Joe

Towards the Light or the Shadow

I try my best to keep hope alive through living with hemophilia.

Join me at the Hemophilia Federation's Infusing Love Blog today.....bit.ly/1HbzDtU

My Boy Is In a Band!

My youngest son “Christian” is in the percussion ensemble at his school.  He just recently had his end of the year concert, and I must say, I was impressed.  There were at least twenty students on the stage playing some difficult rhythms.  I can’t even imagine teaching that many elementary aged children how to play instruments.  I admire the teachers and their incredible patience.

What I saw in my son’s eyes amazed me.  There was a joy that I saw in him that seemed to light up the entire building.  Of course I am prejudiced, but my son was taken away by being able to participate in a group outside of the hospital setting.  He was just one of the many other children on the stage, and he loved it.  He enjoyed his “new normal” in a way that touched me.

I thought, while watching him with the other students, that there was nothing to indicate that he was any different than the other children.  His bleeding disorder was not a factor in his participation.  The idea that we could suspend thoughts of hemophilia for just a brief time was very liberating.  My son has been reclaiming his own identity in the world, and it was amazing.  Of course I got emotional, because his struggles involve the whole family.  His sense of freedom is linked to our own freedom. 

Those of us with children who have chronic bleeding disorders never take for granted what many others seem to accept as expectations.  Our thanks for the simple mundane tasks of an ordinary day remind us that our children’s health can change at the drop of a hat.  Through it all, we will give extra thanks to participate in the things that bring our family joy.  

Today, I am grateful that my boy is in a band; playing to his heart’s delight.

Joe

World Hemophilia Day

What I Want You to Know

Here are a few things that I want those of you not affected by a bleeding disorder to know:

My boys are tough!

• They have been poked with needles more in their 9 year and 18 year existence than most people ever will. 
• They have experienced excruciating pain in their lives from bleeds and manage to laugh and smile more than most people, because a day without a bleed is precious.

My boys are fearless!

• They stare down hemophilia every day and because they do that, not much can rattle them. 
• Their hearts and spirits are some of the most beautiful I have ever seen. 
• They have great compassion because they have experienced crazy pain.  And when they see another person suffering they relate in a way that others cannot understand.

Their dad is amazing!

• He can calm their fear and anxiety in the midst of a yucky situation with laughter, silliness and crazy songs galore!
• Even when he is scared he is calm under pressure and can help make critical decisions about their treatment.
• He loves more than any other human being I have ever met and he would go to the ends of the earth for his boys.

As for me….

• I have done things I never dreamed I would do while advocating for my sons and there is plenty left to do. 
• There is always an answer and just because a doctor does not have it, I’ll find someone who does. 

I never give up. 

I believe in hope. 

A mother’s love and passion for her children is fierce!  When they struggle or hurt it makes her fight harder than ever.  

This crazy, unpredictable, debilitating, expensive, painful condition that ties us together makes us stronger.  

To all of the mom’s and dad’s out there protecting, fighting and advocating for their children, remember that you are not alone.

The Brother I Never Knew

In honor of "National Siblings Day," I wrote a post that originally appeared on the Infusing Love blog hosted by the Hemophilia Federation of America.  

This is about my brother.  He lives in my heart.

I have always felt my brother's presence in my life.  He was born in May of 1962.  There are no pictures of him or any stories about him.  He only lived for five days.  I was born, 6 years later, in October of 1968.

I remember going to the cemetery to visit the family graves when I was a kid.  My brother, Ronnie, was buried with my grandfather.  He did not have a headstone and my parents never talked about him.  I was curious, I wanted to know more about him, but they always shut me out.  His death was a taboo subject in our home.  I can't imagine the pain my parents experienced losing a child.

I often wonder, “How in the world, even as a teenager, could I feel his presence in my life?”  Looking back I believe Ronnie was trying to tell me something that would change my life forever.  To read the rest of this post visit http://bit.ly/1Gxbdz6

Energy in the Air

I am attending the Hemophilia Federation of America's Symposium in St. Louis and let me tell you something, I feel energy like I've not felt in a very, long time! The symposium has grown over the years and being in the presence of 1,000 people who are affected by a bleeding disorder is just amazing.

You don't have to know everyone because what you do know is that the people who are walking the halls with you, the people who are sitting in sessions making connections and learning about things that may enhance their way of life, are the people who have walked in your shoes.

They know what excessive bruising and bleeds look and feel like.

They know what it is like to sit in the emergency for hours and live in a hopsital room for days and weeks on end.

They know that sometimes pain medications don't work and all that does work in holding someone's hand when you are both in tears.

These are the people whose energy and passion for life help fill those parts of me that are often empty.

They share their stories openly with passion.

These are the people who help me see that there is a bright future in store for my boys.

I absolutely adore them all.

 

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You are Zero!: My Letter to the Inhibitor

One of my new favorite sites is "The Mighty."  They are encouraging people to write letters to the disease/disorder that affects the ones they love.  Here's mine.

Dear Hemophilia with an Inhibitor,

I didn't know you could be so vicious.  You destroyed my son's ankle and knee.  You put him in pain that was unimaginable and almost uncontrollable.  You took away his ability to walk.  You even had him at the point where he almost did not wake up after a series of medications.  You put him in the hospital for weeks and months at a time and you made him miss more days of school in one year than most miss in a lifetime.  You kept us from holiday's and birthday's at home and even made us cancel vacations as we were about to walk out of the door.

You caused our entire family pain and we shed many tears.  You threw in an extra bonus by making sure the factor replacement he needed did not work with an extremely rare allergy.  You made us travel out of state for more medical advice and fight for several doctors to work together for the good of my son.

For eight years we were in a constant war with you.  And now, the war is over.  We won.  You aren't even registering anymore...you are zero!  Remember that rare allergy?  What you didn't know was that my husband and I traveled many miles to find a doctor who tried something new.  We fought for this treatment and it worked.  Now that we can use factor VIII, it did its job and annihilated you.  You are zero.

I know people tell me to be ready because you can come back.  But I refuse to live in fear of you.  I know who you are and how to fight you.

I know you are wondering about a few things so let me get you up to speed.  My son's knee and ankle are damaged but healing.  He doesn't need a wheelchair anymore. The hospital?  He hasn't been admitted in six months.  School?  He is there every, single day and loves recess.  Oh and by the way, we went to New York on vacation and he walked everywhere.  He has not had a bleed in months.  Did you hear that?  Months.

You tested my family and inflicted pain on all of us, but you also taught us how to fight.  We are warriors.  Every single one of us. 

And tell your inhibitor friends that when they mess with the family of someone with hemophilia that they will be in for the fight of their life! 

If you dare to come back, we'll be ready to fight again.

Sincerely,

"Christian's" Family

Life is Good

I love Sunday's.  I spend the morning in worship at my church, usually followed by lunch with friends then a nap or binge watching a show on Netflix.  The evening is filled with making sure that clothes are ready for the week, lunch is packed, homework completed (and a little reality television must be watched in order to start the week) :)

But this afternoon was exceptional. I almost took a picture of the sky because it was so perfect, but it would not have done it justice.  My "Christian" and I went on a walk with our little dog, Betty Suarez MacDonald. 

Did you catch that?  We went on a walk.

My Christian walks (with the occasional hop in his gait) and runs and jumps everywhere he goes.  Our recent trip to New York was filled with walking from one place to the other and he did it all.

We are six months out of being in the hospital for his last port placement and I still am having a bit of a difficult time accepting that things are going so well.

Living in crisis can bring out the best and worst in people.  In crisis, I am darn good.  I can handle the yucky stuff, put all of my needs aside and focus on my son and family with every ounce of my being.  I can manage my home from the hospital and get my work done for my job without an issue.  But, I don't focus on myself at all.

Now that I have time to focus on my health and well-being I find that I am pretty lost.  I know what I need to do in order to eat right and move every day, but it's almost as if the energy and strength I once had is completely gone.  My reserves are empty, my spirit is struggling and my focus is, well, out of focus.

It is time to find the things in my life that are important to me again. 

I just never thought it would take such a long time.

A Dad’s Point of View

My name is Joe MacDonald and I am Cazandra’s husband and partner in the management and care of both of our sons and their unique challenges related to having severe hemophilia.  Actually, we all know that there is way much more to raising children than just hemophilia.  We are much more than our bleeding disorders.  Hemophilia, while a major part of our lives, does not define us.

With that said, I am excited about sharing my journey from a dad’s perspective.  I am a pastor in the United Methodist tradition.  With my call to ministry, I bring a viewpoint that I think is unique.  Those of us who face the challenges and joys that bleeding disorders bring have a slightly altered view of the world.  We know what it is like to question the very basic parts of who we are and how we process some of life’s greatest challenges.  My hope is that I might write something that inspires or enlightens those who journey on our path.  In return, and totally for selfish reasons, I am hoping that I may develop a deeper clarity and understanding of my children and the lives of those who are touched by bleeding disorders.

And now, a little about myself.  I was raised in Houston, Texas and spent the first forty-two years of my life in Houston before relocating to the great state of New Mexico.  I performed in musical theater and opera professionally, taught choral music at the high school level, and am now in the middle of my third career.  I have a Bachelor of Arts from Houston Baptist University, a Master of Divinity from theIliff School of Theology, and am currently working on my Doctorate of Ministry at Austin Presbyterian Seminary in Austin, Texas.  If you would like to read more of my pastoral writings, please feel free to read my blog relating to spiritual issues.

So, it is with absolute joy and gratitude that I begin this new adventure into writing on the issues that bleeding disorders brings into my family.  It is an exciting and inspiring journey that we take both as parents and care providers.  We step out hoping that we will make the best and most informed decisions for our children.  It is with confidence in what can be shared that I take the first step down this unique path.

Welcome to My New Bloggy Buddy!

Actually, my new bloggy buddy is my hubby, Joe!  Joe is a fantastic writer and has great perspective on raising our sons with hemophilia.  I asked him if he would like to share his stories and insights on the blog and he actually agreed :)

We have a series in mind and it will be coming soon. 

Joe is off at Austin Presbyterian through the rest of the week as he works on his doctorate and once he settles down and gets back into routine he will be on 2Brothers regularly.

We will be back soon!

Not Yet!

Last week I received an email from the physician who is "corralling" all of the doctors involved in my "Christian's" care.  He wanted to know how my husband and I felt about discussing adjusting Christian's treatment and lowering his frequency of Xolair.

Yikes! No!  We have been in such a great season with hemophilia, even registering a zero titer, that we do not want to change a thing just yet.

When I reached out to him and told him how we felt he completely understood.  He just has the big picture in mind.

All I know is that my son is walking.  He's not using the wheelchair, and I don't miss loading and unloading that chair every day.  He even fractured his wrist right before Christmas!

Now if you are wondering why in the world I put an exclamation mark after the fact that he broke his wrist, you have to understand that was that signified was that he was out playing with his friends doing what other boys often do…they break things :)

The beautiful part was that he did not bleed.

I know it won't always be this easy. But having "just" hemophilia is not too bad these days.

I am grateful.