Today is February 6, 2020. Fifteen years ago, I was wigging our about our son’s third open-heart surgery, scheduled for February 8th. It was bumped to February 9th. That is another story – a story half told in my first book. It is a story I will finish telling when I re-release the book with insights from the past ten years since I wrote that book.
Tonight, that child who almost died three different times, who has over 30 significant scars on his body, most of them surgical, some of them more than 12 inches long, that child told me something astonishing.
Before I tell you what he said, let me tell you other parts of the story, besides the surgeries. There were the first three months of kindergarten when he had to be watched like a hawk watches its prey at recess because he was on extreme blood thinners and a bump to the head could mean a brain bleed. Then at age 10 when he was trapped by a flood on a mountain top with no heart medicine left and evacuation at 12,000 feet imminent when a pulmonary embolism could have happened in a National Guard transport (we fortunately were guided down the mountain not over it).
Three neuropsych evaluations to determine how much frontal lobe damage and of what variety at ages nine, twelve, and fifteen. 504 plans at every grade. Extraordinary work to help him organize himself and get his homework turned in. Finding the right A.D.D. meds to help him reach his potential. The braces he wore on his tiny feet when he was three because his toes were atrophying from the way he walked because his spine was malformed. The many double pairs of shoes we bought in two sizes, two sizes apart because his feet were so very different, not a half size, but two full sizes. Finally, orthopedic inserts to help him not fall.
Now, tonight, this child who lived through so much tells me, “Hey, I can graduate early.” And he can. He can graduate half way through his senior year (which starts in August) with a light load of classes. He might just do that. Or he might take a couple of college classes in high school that will take him to May and save us some cash, but HEY – my child has all As and Bs and can graduate early even though several doctors didn’t think he would live to be two months old, much less sixteen. My kid can graduate in December, this calendar year, the same kid who was a candidate for hospice care the morning after he was born. It’s kind of a big deal.
So, tonight, I’m going to beam a little bit. I’m going to brag a little bit. I’m going to not worry about my incomplete sentences above because they are legitimately excited utterances. I don’t want to jinx anything, because as much as I’ve healed and don’t like to be superstitious I still am, but look how far he’s come! Look how far we’ve all come! We deserve to celebrate this moment. Celebrate it with us. So many of you have been here for the ride.
What an awesome blog to read, Amanda. It took me back in memory lane also, with all the ups and downs of Liam’s life, my hours spent with him when he was a bit of a lad – those were precious times for me. Thank you for giving me those hours with him. I am so pleased and proud to read about his accomplishments so far in his young years. I hope to be there the day he graduates, if not as his No. 1 fan, at least in the top five. So much love to you all.
This makes me smile so much! You have all fought like crazy and have so much to be proud of. Thank you for sharing!
Amanda, I still follow your every post because both of our sons have the same diagnosis and are the same age. My sons name is Jason Reed. I love the way you write and can’t wait for your book to be released. I really hope we can connect again one day. Betsy.firstname.lastname@example.org