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.