I feel that we all hold up pretty well dealing with Atticus’s LM. We are fully aware that things could always be a lot worse and we are grateful every single day that we basically won the big tongue lottery – meaning that for all of the reasons that one could be born with an enlarged tongue, I would have given anything for it to be an isolated event and not associated with some severe syndrome or disorder – and we were given that gift. With a diagnosis of Lymphatic Malformation came the sigh of relief that Atticus would lead a normal life, with a normal life span, and no cognitive impairments. But that is not to say that a life with LM is easy.
Two weeks ago, Atticus had his 10th surgery. He is not even three years old yet. In many ways, a diagnosis of LM provided us with comfort in knowing that Atticus is really just like every other kid – he just happens to have a big tongue and lower lip. But a diagnosis of LM also means a lifetime of surgeries, in order to have a more normal appearance, but also to maintain proper functionality of the affected areas.
We honestly did not know what to expect when we left St. Louis with our newborn back in May 2012. I am so grateful that Atticus is thriving and doing so well. Even when his tongue was massive, he found ways to eat and drink without needing a feeding tube. He is the smartest, happiest, silliest child I could have ever asked for. But, let me tell you, having a child with LM is not easy.
We have been through a lot, which became more apparent to me during our last hospital stay at Arkansas Children’s Hospital. Atticus had his 10th surgery, which was his 2nd tongue debulking (his last tongue reduction was when he was 6 months old). The surgery and recovery have not been easy. The night of his surgery, his pain was so bad that morphine could not even control it. He was awake all night whimpering and crying and the only relief came a couple minutes after receiving morphine – and the relief was very short-lived. I ‘slept’ in his hospital bed with him that night, and for the remainder of his hospital stay, listening to him cry and not able to do anything about it. What could I do? What could I say? I certainly do not understand what kind of pain he is feeling, nor will I ever truly understand, since I will probably never need to have a portion of my tongue cut out.
On top of the tongue excision, he also had a small wedge on the inner side of his bottom lip removed, and he had bleomycin injections into his tongue, and laser done on his lip. The surgery took over three hours and Atticus received a blood transfusion, mainly to help him heal afterwards. Since his malformation is highly vascular, blood loss is always a concern. Atticus spent only three nights in the hospital – he just needed to show that he could keep liquids down, which we were getting into him by syringe. By the fifth day, he was drinking milk willingly from his sippy cup – but we are now two weeks out and he is still not eating properly nor is he back to being his normal self (although he is getting there). He will willingly eat ice cream, but everything else is being fed to him (somewhat forcefully) by syringe. We are mostly giving him baby food and pureed fruits for now until his tongue is less sore.
I think this surgery and recovery have been harder than others because Atticus is now a little person with a huge personality. After this surgery he was just not himself – not talking and not getting off the couch. That is hard to see and I miss my little man. I want to see him running around again and talking and asking questions. But I do realize that it’ll take time. It’s only been two weeks and he had a lot done.
It’s hard seeing him have to go through all of this. I have seen my child cry in extreme pain much more than I ever thought I would. Brian and I have spent more nights sleeping on hospital couches than we ever thought we would. And, at times, I feel much older and more tired than I probably should at age 32. It’s certainly an interesting life – traveling to Arkansas every few months, staying in Ronald McDonald House, sleeping in countless hospital rooms, and learning more about nursing and medicine than I ever thought I would. It takes its toll on all of us but it is the hand we’ve been dealt. And even when I’m sleep deprived, cranky, and nursing my child back to health, I need to remember that we won the big tongue lottery.
“Tears will dry if you give them time. Life’s a roller coaster, keep your arms inside.” Conor Oberst. “You Are Your Mother’s Child.” Upside Down Mountain.