A letter to my daughter

Someone on the FH forum I'm a part of recently posted this abstract summarizing a study done by doctors from Shriners Hospitals comparing adult outcomes of FH patients treated with amputation vs. limb lengthening. I was very encouraged by the abstract- amputees spent significantly less of their childhood in treatment, hospitals, and surgeries yet reported equal or higher satisfaction on all quality of life areas including:  pain or use of pain medicine, sports participation, activity restriction, comfort wearing shorts, dislike of limb appearance, satisfaction with treatment, employment, income, and education. This was positive information for the treatment option Anna will be receiving. Even better, amputees reported a quality of life that was equal to or greater than the "normal" adult population in all areas like jobs, self-esteem, relationships, happiness, etc. And not one of the 64 showed any signs of depression. How encouraging! When people's tendency is to feel sorry for Anna, I know how unnecessary that is because in my heart I believe she will thrive.

I'm already starting to realize how being different/having a child with a difference can bring a richness to life that being normal often misses out on. A few people with physical differences told me this in the beginning, but I sort of glossed over it. It really is true.

I already feel different than I used to in so many good ways. I feel connected to other parents who have kids with health problems or disabilities, or even another unusual circumstance in their family. I feel compassion and love for them that I never came close to having before. I am now quick to realize when I am judging someone by their outward appearance or making assumptions about a person, and I see potential in people like I never used to. Before Anna, I felt very disconnected from others in these types of situations because I had no idea how to relate to them. I realize now how I was missing out on this whole world of love, compassion, courage, and joy.

And I would never have experienced it if I had been given only perfectly healthy children.

I've met so many amazing people from all over the world who feel like family. One of them, Katie, writes how even if she could change the way things were, she wouldn't. When I first read that I admired her attitude but wondered if I could ever feel the same. It was clear in this post how much I grieved our loss of normalcy and Anna's future challenges. All I had ever known was to be normal. A normal husband, normal family, normal life.

Now, I'm not so sure I would return to normal even if I could. My life is not as I expected it, but I'm starting to wonder if it's actually better this way. I feel so blessed in how much I've changed and experienced life through Anna already, and I believe she will not only have this deep joy that comes from truly learning to love life, but that she will touch other people in the same way. Would I really want to change that just so she can look like everyone else? Is normal really better? Does normal necessarily = happier?

A comment I get frequently: "Oh look, her leg is stuck in her pants!"

My Dear Anna, you are my hero. You have shown yourself to be such a little fighter. I pray that you never let go of that tenacity, and that you channel it to be a fighter for God's kingdom.

Sometimes you will have questions that your Daddy and I can't answer. That's ok. Ask your Heavenly Father, he likes to whisper to us right when we need it most. He longs to talk to you about the things on your heart. There may be times when you wish you could be like everyone else. He understands most of all. He will never let you down.

Never let anybody tell you what you can and cannot do. We are only limited by others' expectations and our own fear.

If people are rude or ignorant in their words or actions, love them. Love them fiercely. Often times it is the ones who express harshness that are in need of love the most. Be the one to reach out when others least expect it. The way you treat others will take you much farther in life than any two feet could.

And as one wise mother of a little boy once said,
A loser is not the one who runs last in the race. It is the one who sits and watches and has never tried to run.

I love you my dear, and I wouldn't change a thing about you. "All together beautiful you are, my darling, there is no flaw in you."

Your Mama