This blog entry is for my fellow fathers, those that have had to suffer the pain of hearing that one or more of their beloved children is terminally ill. Our son Reed has Sanfilippo syndrome, which is a rare, terminal genetic disease with no known treatment. The disease causes nueeuodegeneration and a child that appears to grow normally for the first few years will slow developmentally, regress and finally die typically around fifteen.
As someone commented the other day, online communities like Facebook have brought together these rare disease communities. It is a mixed blessing. While I get the benefit of knowing parents in similar situations I also learn about all the poor children that die and see the pictures of where my sweet boy might end up. Reed, my son, is only three and almost no one would guess that anything is wrong with him. We got an early diagnosis. That gives us time to fight and gives purpose to my life. For that I am grateful. At the same time, it feels often like I am trying to lift a bus off of him.
While I have met a few MPS III dads, I know far more moms. The moms are more active in the forums. They constantly send prayers to one another and cherish the small victories that each other obtain. These moms are awesome, my hats off to them. I am in awe of their grace and strength.
I probably know less than ten Sanfilippo dads. For all you others, I feel like I know you because I have taken a few steps in your shoes. The experience of a dad may be different from the mom. We typically see ourselves as the providers and protectors of the family. Speaking for myself, the guilt of not being able to protect and help my son was overwhelming. My anguish reached a point where I could almost not function. I took medications, spoke to a therapist, anything I could think of to help. The meds did help...but I did one thing that helped even more.
I forgave myself. Stupid as that may sound, I sat down and told myself that I will do everything I can and that none of us are guaranteed a single day. I should be grateful for this day I just had and give praise to God.
I am a Christian and in my faith we believe that God sacrificied his only son to cleanse away our sin. I figured if God could forgive me I should try to forgive myself.
Over the last two weeks, my conscious effort to remain positive has opened doors that I would have never expected. Someday I will share these stories with you...but not yet.
One thing for sure has happened, people are more open to me. Having a very sick kid causes some people to move close and others to run away. No problem, I honestly shut down when I see really bad news about the older Sanfilppo kids too. It doesn't mean I don't love them, it is just that I can't deal with processing another loss right now.
My takeaway: whether you have sick kids or not, enjoy each moment with them. This life is short. Do your best, love God and forgive yourself.
All my best,