I bought every ridiculous and completely unnecessary gadget available. I actually liked going to Babies R Us and browsing this unknown territory of all things soft and fuzzy (or Buy Buy Baby, even better). Did I really think that the PeePee TeePees I purchased for $11 were going to spare me from getting pee’ed on once in a while? I poured over every single thing that went in his mouth, and I beamed with pride over how he just loved his peas and carrots, I must be doing something right! (I didn’t realize that pretty much all babies eat their vegetables when they’re only six months old). Every tiny little thing Ty did prompted a phone call to my mom, and my husband, and whoever else wanted to hear about the amazing milestone reached like when I was sure he gave me an intentional “thumbs up” at six weeks, or when I could swear he said “boob” when he was hungry almost one year before we actually documented his first word. He was a genius!
When my second son, Gavin, was born, I became the “second-time” mom, which is totally different than the “new mom.” New mom would never let her infant cry without running to see what was wrong. Scooping him up. Making everything alright. The second-time mom has another toddler or little kid to tend to, and they make themselves much more known than they ever did as an infant. If Ty wanted my attention, he might throw his tractor at the television, or find a way to escape from the house. Second-time mom knows that the baby can cry, it won’t scar him for life, but if I leave that toddler alone for another minute he might just put a fork in the microwave. Second-time mom also lets her youngest do things at a drastically earlier age than she ever would have allowed her first child. Lollipops are a great example. I never, ever gave Ty lollipops when he was a baby. I feared for his teeth! But by the time he was three, it happened. Lollipops are everywhere and I had never even realized it! So that meant Gavin was getting a lollipop, too – at 18 months – because you try prying that thing from his Viking grip when he comes across his brother’s leftovers.
I was a “stay at home” mom on extended maternity leave with Ty, then a “working mom,” then a “stay at home” mom again until Gavin was four months old. When I was home all day, there were times I wanted to scratch my eyes out when I looked around the house to find nothing but messes with seemingly endless screaming crying in the background. I yearned to take a ½ hour shower, wear heels, and grab coffee with the girls at work. Then there were times at work I wanted to scratch my eyes out when I was on my laptop at 1 in the morning, trying to make deadline after an especially difficult night with the babies There wasn’t much time in the morning or the evening for them to make a big mess because our lives were so incredibly rushed all the time. There was never enough time to get ready in the morning and out the door on time, then in the evening it was a rushed “dinner/bath/bed” routine so I could get back on my computer and work some more once they were asleep.
And, then, unfortunately, I became a “cancer mom.” Or, momcologist. I watched the nurses like a hawk. I learned every detail about every medication and a doctor couldn’t enter my room without being asked at least 5 questions. I know acronyms for chemotherapy and the side effects of each. I had a puke bucket on every table in the house and under each seat in my car. I could help Ty as he got sick in the backseat without even missing a beat on the highway. I knew when to worry and when not to worry – and cancer mom worry is totally different than “I think the poor little guy might be catching a cold” kind of worry. It’s more like, “he’s been sleeping too long, it might be hydrocephalus.” And I never had more guilt in my life. I felt guilty for letting it happen. Guilty for having to put Ty before Gavin. Guilty for the inability to take away his pain. Guilty that it was him and not me. At the same time I was never more empowered. We will beat this! FU cancer, you will lose! Superheroes, boxing gloves and gold ribbons filled my diaper bag alongside belly tubes, syringes, sanitary wipes, and about 30 different bottles of medication. I never gave up hope because that would mean giving up on him. Despite how painful those days were on multiple levels, we also made some of our most beautiful memories there and I long to go back with every ounce of my being.
I became a “special needs” mom. Not just because Ty was sick, but because he became severely disabled as a result of his treatment. For two years he couldn’t walk. His speech was compromised. He ate from a tube in his belly and he needed around-the-clock care. For almost a year he could barely move his arms or hold his head up. I fought for better treatment options. I fought for therapy and for his education. I felt the stares on the street and I used to prepare myself with what I would say if someone questioned me about pulling into a handicapped spot. I can’t believe I used to worry about that, but I did. I stressed over it because I knew to the average person it might look like I was just being lazy because I had a toddler in a stroller. They wouldn’t know he was a disabled boy who preferred a stroller over a wheelchair. I felt like I was constantly on the defensive and that is a terrible way to feel. To all the special needs moms out there – you are incredible. You are doing everything right and you don’t have to explain anything to anybody.
Now, I’m forever a bereaved mom, which in turns brings out “crazy mom” sometimes. We all know her, but for a bereaved parent “crazy mom” can be really bad. No sleep (like, none). Or, do nothing BUT sleep. I don’t want to talk to anyone. My anxiety gets so high I chew the skin off my fingers until they bleed and have psoriasis of the scalp, which feels like my skin is literally crawling. Crazy mom can’t listen to music because somehow every song is directed toward her and only her, making her either sad or mad. I have a therapist and a psychiatrist and I’ve been diagnosed with post-traumatic stress syndrome, but they can’t help me. Nothing helps but time. And nothing will ever fill this void.
Which brings me to “mom on a mission.” The only way I can cope with how much I miss my son is by throwing myself into the cause. I need to do this to keep “crazy mom” at bay. I need to do this because when I see a picture of my son in pain, I want so desperately for the chance to fix him again. And I can’t. The other day I pulled up one of his pictures after he just came out of one of 20 surgeries he endured in 2 years. He was crying and he looked terrified and he had bandages on his head and chest. I wrapped my arms around my computer screen and screamed out loud, over and over again. “I want to fix you!!! Why couldn’t I fix you!! Feel better, baby, don’t cry, I can make it all better.” I put my face next to the computer screen and tried to comfort him. It is sad and it is desperate and it is my reality. So I have to throw all of that energy into trying to fix him by fixing others like him instead. This just can’t keep happening. Someone, somewhere has to find a cure for these kids.
Today I often refer to myself as the “grandma” mom. The warm, mushy, cheek-pinching grandma mom. That’s because I parent with more love than ever before. I am weathered. I am worn out. But I am also wiser. My emotional weight may rob me of the energy to chase after my son with vigor, but I watch every single thing he does with love and pride. The way he props his head up on his hand when he’s getting full at the dinner table. The way he listens so intently when we read a book. The way he hates to be interrupted even if I know what he’s about to say. The way he says “wee-memba” and “fwee-get” instead of “remember” and “forget.” I can’t hug him and kiss him enough. When he is totally wild and crazy, I refrain from scolding and instead open my arms wider like a loving grandma. “Get over here and give me a hug you, crazy boy!”
Tonight I put him to bed because my husband was working late. I always lay with him until he falls sound asleep because that’s what grandma moms do. We coddle. After a few minutes he pulled me in closer for a snuggle until we were nose to nose so I whispered, “I love you.”
“I love you too. More than anything.” He said.
Then, a little quieter, he reiterated, “Yeah. More than anything.” Within seconds his breath changed into the rhythm of deep sleep. “Me too” I whispered.
Because above all and despite everything, I am a “lucky mom”.