“Hope is important because it can make the present moment most difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” -Thich Nhat Hanh
I have never been a big fan of awareness bracelets — the kind that are made of rubber that have sayings and logos promoting a foundation or company. But over the past year I have been wearing one almost daily. It is simple, yet it says so much. And it is the word that is at the center of my heart.
When my 18-year-old son, Julian, was little I remember hearing about a second generation of factor that would be a smaller diluent size. Those 20cc syringes with such a little boy seemed huge! And then a next generation of factor did come and those 20cc syringes were no longer used. I had hoped and waited for something to improve and it actually happened.
Then the talk became about not having to infuse as often, “Wouldn’t it be amazing for our boys to have a longer lasting factor?” And all of these years later, there is a longer acting product available with even more new products on the cusp of being a reality.
Last October began a season that seemed endless as my 8-year-old, Caeleb, was suffering from a bleed in his right knee that would not stop. The hospital was truly our second home during those five months of constant pain and struggle. There were times I could not remember the day of the week or what I had eaten for lunch, but I knew every ounce of medication that my son was taking and at what time.
From time to time my hope would fade away, but I kept talking about how things would get better soon, how he would be walking and running again, how the inhibitor would eventually go away. I continued to talk about hope and kept it in the forefront of our minds, even if it was only in words that seemed to mean nothing; I was still holding on and refusing to let go.
The only thing that got me through those months was the fact that I knew it would not last forever. It would get better. I had a tremendous amount of hope that my son would walk again and that his inhibitor would eventually be eradicated.
Through those months I learned that the most important thing I could do was keep hope alive for my son despite how terrible things were. Some people believe that holding on to hope is dangerous because they are afraid that the outcome they wish for will not come true and they will be disappointed. I choose to focus on the best possible outcome. Even if my desired outcome does not happen, I would rather spend my time holding on to hope, being positive and making the most of an incredibly difficult situation.
Our children learn by example. One thing I can do is be hopeful and try to see the best in everything despite the roadblocks that seem to constantly be thrown in our way. When I am gone and my children talk about me I pray that one of the things at the top of their list is that “Mom never gave up. Her hope could move a mountain.”
Cazandra lives with her husband, Joe, and 17 year old son, Julian, and 7 year old son, Caeleb, in New Mexico.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers