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!

Everyone is Different

Several people in the bleeding disorder community don't understand why some people are hospitalized so often for bleeds.  "Why can't you treat the bleed at home?  Why do you go to the hospital so often?"  Honestly, those kind of comments make me doubt my instincts.  They upset me a bit.

Often times my "Christian", who is a frequent guest on the 6th floor at UNM Children's Hospital, has to be admitted for bleeds.  It's not just the bleed that is being treated, but the pain.  We cannot control the pain at home and the only way to give him relief is by IV Morphine that can be administered at the hospital. 

There is nothing worse than hearing your child scream in pain and not being able to help him.

If you were to look at him lying in bed playing the iPad, you would never know he was hurt.  But when you pull the covers down and look at his knee and you realize he has not moved positions on the bed for hours on end, you begin to understand.

People don't understand what our children go through.  They assume that if you can't "see" the condition, it really can't be all that bad.  A cancer patient who has lost their hair is a visual testimony to what they are battling.  The same for a person with a missing limb or someone with an oxygen tank by their side.

Truth is, I can't imagine what my son feels when he has a bleed.  It's a pain that takes him to a different place. Sometimes I think he is out of his mind for a brief few moments, and it is heartbreaking.

If it means coming to the hospital to treat bleeds and pain, then that's what we will do.

Everyone with a bleeding disorder is unique in how their bleeding disorder "shows up".  As a community, we need to remember that we are all different and sometimes what works for one person does not work for the other.  Let's continue to be passionate about the care we give and receive for our loves ones...and be passionate by reaching out and offering a lifeline of support to each other.

It Never Fails

Our family is preparing to travel to Chicago for the National Hemophilia Foundation's Annual Meeting. And what happens? "Christian" is having a bleed in his left foot and is starting a nasty cough. It never fails that something happens as we are about to leave town.

But we do the best we can and move through it. It may take some extra infusing and cough medicines, but we forge ahead.

This is a huge opportunity for my children to be involved with others who have the same struggles and make friends in the community.

If you ever have the opportunity to attend the NHF Conference, go! It is a wonderful experience for the entre family.

I'm Just Amazed

I have a Facebook account. I normally check in during the evenings, but sometimes I get messages during the day when someone posts to a couple of the groups I belong to. One of those groups is "Living With Hemophilia and Inhibitors." I was reading through a few posts the other day and was just blown away at how amazingly smart these caregivers are! When you look at the comments, often you would think that "these must be healthcare professionals."

No, most of us who parent children with a bleeding disorder are not clinicians, but we do know what is best for our children. Sometimes it's that good old "intuition" that kicks in and leads us to making the best decisions about the care of our children. I tend to believe that God has a big hand in the "intuition" department, but call it what you like, it's an important part of caring for our children.

Full Circle

I love seeing things come "full circle." You know, when something generous or kind comes back to you.

I have a sweet friend in Texas, "M". When her son was diagnosed with hemophilia, she reached out to me and my husband and we became regulars in their home. Those bleeds early on for her son would bring us to her home for support. I did the best I could to reassure her that hemophilia could be dealt with and that her son could live a very full life. He is now a very active baseball player with no joint bleeds to date! M and her husband are avid workers in the local hemophilia community and have helped numerous people in their same circumstances.

Knowing they are big baseball folks, I called her and asked her advice on tee-ball. I am clueless when it comes to sports and my "Christian" is going to be a big sports kid. She talked me through the basics and I feel much better.

She came back and shared her experience with me, reassured me, and left me feeling as if I was not alone.

I think that is what it is all about in this community. Not feeling alone.

We must reach out to others. We need to stay "in the loop" with our local chapters and meet others who may need our help, but also meet those who may help us when we least expect it.