“Give thanks in all circumstances…” Sounds easy, right? Nope. That doesn’t sound easy at all. I don’t care who you are. Even if you are a lucky soul who is mindful of their thankfulness every day. I think it would be fair to say that very few of us are truly thankful in all circumstances. ALL is a pretty big word when you get down to brass tacks. Yes, indeed—three letters that carry a powerful punch. Here…let me throw some examples your way just to get the ball rolling. I love my kids but I am far from thankful for them when they are tugging at my sweater, screaming in my ear, taking toys away from one another just to make the other cry, and letting the dog lick their hands while I’m trying to cook dinner. I love my husband but I am not thankful when he comes home late from work (mind you, it is my husband’s job that allows me to stay home and care for our children. It is my husband’s job that gives us great insurance. It is my husband’s job that relocated us to Boston so Mac could be treated at one of the best hospitals in the nation. It provides a roof over our head, food on our plate, and money in the bank account but all that seems to go out the window of thankfulness when coming home 15 minutes later than he said he would.). I’m thankful for the roof over our heads (funded by tax dollars, no less) but I tend to be ungrateful when downstairs in 65’ and upstairs in 89’ (I wish I was exaggerating), the lights turn on / off for no apparent reason, and the playing of TAPS every night at 9pm makes me do a momma-pucker and pray that it doesn’t wake one, if not both, of my children. I could go on all day but I’m sure there is an article (or a thousand articles) that restricts the length of an effective blog.
I’m not going to lie. I had every intention of publishing a different blog last Saturday. One that was upbeat. Positive. A real “go get-em’” attitude piece. But then, a droopy eye decided to invade my cherub of a son and give him the appearance of Quasimodo’s first cousin on Thursday. A “let’s wait and see” mode of attack ensued only to be followed by a Friday of a working husband and a sleep-deprived, I-think-it’s-a-good-idea-to-do-a-cleanse-before-Thanksgiving-momma lugging two toddlers to a pediatrician visit, which ultimately led to a fun-filled afternoon at the packed ophthalmologist office into the wee-hours of early evening. Breath. It’s just a day. A day in the life. Your life, Amanda. The chaos. The chaos which is the normalcy of your “new” life. So…at 559pm, I finally loaded by two, no-napping toddlers into the car (one which had been up since 4am—cue the violins). So what do the little Howards start doing. They started singing, of course. And laughing. Bless their little Howard hearts. They bend me until I want to break and then they love me like no other. This is the motherhood you hear about and don’t understand until you are a parent. In this, I give thanks.
Sadly, our chaotic Friday only led to a chaotic Saturday ER visit to Boston Children’s first thing in the morning. They recognize you. They see the bright orange tag. You’ve been flagged: Oncology patient. You settle into the cramped room knowing there will be hours of waiting. Hours of doctors telling you they think it is just an “infection.” I love our doctors. I love Boston Children’s (truly, I do). But you reach a certain point as a parent of a chronically-ill child that you just know. You just know it’s not an “infection.” You know that something is “just not right.” You can’t put your finger on it. You don’t have a doctoral degree and you don’t know the medical term, but you know the child you are holding in your arms is NOT your child.
Then the order for the MRI with contrast comes. For any of those of you who may not have much experience with testing, MRI’s are usually not a source of relief; they are merely a confirmation of things that are suspected to be. Mac has had numerous scans but this is the first where he has been on the table and cried out, “MOMMA!!! MOM—MA!!!” BREAK MY HEART. Why can’t they learn to say “daddy” first?!! I mean, really. It has been hard enough in the past when Mac has fought sedation but the fact he is being restrained (by people who truly want to help him) and he still cries out for “momma,” is a feeling of hurt I never knew existed. How do you explain to a baby that the pain you are putting him through is in effort—not in vain—to make his life better?! Salt in the wound, my friends. Salt in the wound.
So we go back to our home away from home. The ER doctor comes to say he will be back momentarily to discuss the results. He keeps his promise but this time, he brings a friend (again, never a good sign). Dr. Andrews* comes in from the oncology team. A seemingly familiar buzzing sound comes into play…”soft-tissue mass and lesion on his orbital bone (more buzzing) in addition to more lesion(s) on the back of his skull…(buzz…buzz…tears…buzz). We have to seek a more aggressive chemotherapy regiment.” SILENCE. I want to leave. I want to leave this room. Leave this hospital. The state. The country. This life. We (#teammachoward) have officially been punched in the gut. We are no longer half way through Mac’s chemotherapy protocol. We are starting at ground-zero. So…how am I suppose to give thanks in this moment? Am I thankful for our nine-hour ER visit? Am I thankful for new lesions? Am I thankful that my 18-month old son has to pursue a chemotherapy regiment that has a “minimal” side-effect of secondary-leukemia? Where is the “thanks” in all of this darkness? I will tell you: We will give thanks in this moment because there was such a TREMENDOUS outpouring of love and support for our family (from Christians, Atheists, Jews, friends, strangers, cancer-survivors, etc.). Our inbox at one point reached 700+ emails of people reaching out to us from around the world letting us know they were praying for us, sending us love, and wanted to know what they could do to help us. Histio is ugly. Histio does not play fair. But what I can say about histio is it has brought new people into our lives. Histio has reconnected us with people we have lost contact with over the years. Histio has cemented our existing relationships with a strength that is impenetrable. There is beauty to be found among all this ugliness that has completely altered our lives and for that, I will give thanks. Histio has challenged the faith of the faithful and challenged the faith of the unbelieving…For this, I will give thanks. I can’t believe these words are coming out of my mind onto paper but “thank you histio.” You are a rotten, evil, no-cure-in-sight disease but you breed hope, love, and faith and for that, I will give thanks.