When Nicholas and I left the RIAO a couple weeks ago after discussing the surgical plan Dr. Standard had for him I said “Nick it really sounds like this is the rainbow at the end of the pot”. I have a knack for mixing up such phrases but this one had me thinking.
The rainbow at the end of the pot as a phrase works for me because surely my son has been my pot of gold since the day he was born. His existence, his Nick-ness is golden. He’s a gift. All children are.
The fibular hemimelia journey as the rainbow might not seem as clear but it works too. Nicholas has had a lot of surgery yes but in the midst of it there are triumphs, laughter and joy. You’d probably be surprised how much we laugh in the hospital. Even in the rough moments there is tenderness, kindness and love like no other. I might whine or vent about my stress and my worry but in the grand scheme… 12 years of Nicks leg working for him with only a few exceptions is the rainbow and the pot of gold really.
Nick’s path has not been a straight one in terms of fibular hemimelia treatment but with each surgery his leg is more functional. It has always functioned. Now my hope is that it can function without daily pain. That’s is the rainbow we are hoping for.
At the moment my boy is doing really well. We are spreading apart his pain medication doses as he is virtually pain free when he’s not moving but rather sleepy. Ambulating is still difficult and painful but he gets up and does it. His strength is inspiring on so many levels.
We will all need strength for removing bandages today. At the hospital we talked about creating buttons that say “I hate tape!”. We really hate it. So many pains can be managed or lessened but tape just sucks. It’s a necessary evil. No rainbow. No pot. Just evil.