Wham! Our lives can change in an instant.
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When the phone rings, the news on the other end could be a terminal diagnosis or a family member could have lost their life.
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You drive to the local grocery store to get a gallon of milk and be involved in an accident.
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You get a promotion at work and you are truly working at your full potential.
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You stop and help someone in need and your day never gets back on schedule.
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A little boy with hemophilia spontaneously starts to bleed and is bedridden and on pain medication for days on end…and mom and dad have to rearrange their worlds until he heals.
It can happen so fast with no explanation.
I often wonder why people have to suffer; especially children. The only way I can make sense of it is to believe that when a child suffers they have an amazing purpose in this world. It may be that they grow up to do amazing things; or if their life is short they are here to help pull those around them together and heal them in a way they never dreamed.
Maybe it sounds too simple. But what I do know is that through my son’s suffering, I have become a changed woman. I am not the same person I was before he was born in January 2006.
I just thought my son was just an answer to my prayer for having another child (after years of infertility). I didn’t know what God was doing at the time.
I had no idea that his hemophilia would change me into a stronger more resilient woman.
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I know what it is like to hear my son scream in pain for hours on end with IV pain meds not working.
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I know what it is like to see my son not be able to “keep up” with his friends on the playground because his ankle and knee are in constant pain.
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I know what it is like to see people stare at my son because he is in a wheelchair and he “looks okay”…they have no idea that two of his joints are shot.
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I know all too well the horror in watching my son be overmedicated in the hospital and a team of clinicians surround him to wake him up.
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And I know the fear that races through my body when my son is heavily medicated and I stay up all night counting his breaths.
My heart has stopped more times than I can count with my little one, and the crazy part of it all is that I never knew I had it in me to love as intensely as I do. It’s almost too much to comprehend sometimes.
I can’t take his pain away because I would in an instant.
What I can do is advocate for my children, always ask questions, demand “out of the box” thinking on treatments, and never give up on finding the treatment that works best.
Hemophilia is awful…but it is part of our lives. We do what we have to do to the best of our ability.
I’ll never give up.
