My wonderful little boy, Adam, has PFFD. Not only is his femur short, but
also his hip and knee are not formed properly. I was fortunate to learn of
his condition before he was born, though. No parent wants to hear that their
sweet little baby will be born with problems, but knowing of it ahead of
time did give me time to adjust. Since Adam came into this world early, I
was mostly grateful that PFFD isn't life-threatening. But over the time since
then, I've run the gamut of other feelings too.
One of my first concerns was whether or not PFFD is hereditary. Did I do this to him? Is he going to suffer because of something wrong with me? Even after the doctors assured me that it wasn't genetic, it still took awhile for the guilt to go away.
PFFD is such a difficult thing to deal with. I heard such scary things from the doctors. I learned about amputation and Van Nes rotation. Since I had always believed his leg could be "fixed", these options the doctors were telling me about just didn't make sense. The logic escaped me: If it's too short, cut it off? No, surely that couldn't be right. I was confused. I was sad. And I was sure that the doctors were wrong. So I kept searching for the doctor who could offer us an option that made more sense to me. And in the meantime, if we had to, we would simply wait for technology to catch up to Adam's needs. And I prayed that I was right to wait.
Ultimately, I did find a doctor located in Baltimore, Maryland, who offered us some hope. He is Dr. Dror Paley with the Maryland Center for Limb Lengthening and Reconstruction, and he is a world-renowned expert in this field. The treatment he offered is taking a series of operations to accomplish what we want, and it required that we move 1200 miles away from family and friends to be here for the duration of the treatment. But when it's over, Adam's leg will be long and strong, and we all feel certain that the effort will have been worth it. We feel so relieved and grateful to have the opportunity to be here.
Deciding to do this was hard, though. My family didn't want me to leave, and until they met Dr. Paley, they didn't understand why I would even think of doing this. And the day we arrived in Maryland, I cried all the way in to Baltimore. I had no job waiting for me, no place to live, and no idea how I was going to make this all work. It was just me, Adam, and his older brother Daniel, here all alone, hoping this was the right thing after all. I was scared to death.
I have a great job now, and we have a comfortable place to live. We have acquired some really great friends. Mostly we're happy with our life here. But I'm still scared. We are only about half way through what we need to accomplish here, and there are no guarantees about the outcome. Adam is so strong and brave, but a little boy his age shouldn't have to be that strong or brave. Adam's care is sometimes painful for him, and that makes me so sad. And there are times in the course of his care when I've been the one to have to inflict pain on him. I'm the one who cleans the pin sites on his Ilizarov device with salt water each night. In the beginning it hurt him so much. But I knew it had to be done. Knowing that didn't keep my heart from aching though. There are times when I'm certain that God should have given Adam a stronger mom.
I am a woman of faith, and I draw great amounts of comfort and strength from a close relationship with my God. I am truly grateful for all that He has made possible in our lives. But there are times when I would like to have a flesh and blood person sitting with me, letting me take off my "brave face" and tell what's deep inside my heart, and holding me while I cry.
But so few people want to talk about the difficult feelings all this generates. Few in my family or any of my friends has ever opened the door for me to talk about how I feel. And I would hesitate anyway, I think, because I don't want to burden them, or worse yet, have them avoid me because I'm such a downer to be around. So I try to appear upbeat and positive. Many tell me that I'm doing a great job in all of this. I even had a 97 year old woman tell me that I'm the bravest woman she has ever known. But I wonder how many would think of me as Super Mom if they knew how scared I am ... or how tired I am....or how guilty I feel sometimes ....or how many times I'm angry that my little boy has to go through this. They might not think of me as so strong if they had seen me the night before Adam's first surgery. I was face down on the bathroom floor in a puddle of tears begging God to spare my son, to do something Godly to heal him so he wouldn't have to hurt. ....But not many want to talk about those kinds of things.
That's why I'm here now telling you this. I want you to know that all of this is okay. It's okay to have these feelings. It's okay to not be Super Mom or Super Dad. It's okay to be vulnerable. You must know, too, that you're not alone when you feel these things. It's normal, it's alright, and you will make it through this just fine. All that's ever required of you is that you do your best. There are lots of right answers out there, so find out which one is the best right answer for you and your child. Then just go for it. And don't be afraid to cry puddles of tears.
If you need someone to talk to or have questions I might be able to help
with, please contact me.
I'm at rabblebabble@hotmail.com
Peace to all of you!
For more thoughts and comments from Melissa, see The Best Right Answer.
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