I remember the first baby item I bought--an adorable set including a tiny bib, bonnet, and set of socks. The white and pink floral pattern was perfect for the little girl I was sure would one day make me a Mom. I had only recently graduated college and had just started dating a new guy. However, I was already fairly certain he was “the one” and since I had dreamed about becoming a Mama for as long as I could remember I decided that this was the perfect first purchase to build my (our) fairy-tales on.
I was right about some of this. As fate would have it, I would go on to marry “that” guy and he and I would go on to create our own fairytale. But our fairytale played out much differently than I ever could have imagined. I remember so clearly the moments when we found out we were expecting each of you--days that will be etched in my mind for all of my life as 3 of my happiest days. Those days were the start of many things, including frequent and vivid dreams of me holding and rocking my sweet baby girl--clothed in that pink floral bonnet and bib, no less, dreams of rocking you each and cuddling you to no end, dreams of excited Christmas mornings and late games of basketball in the backyard. It was the start of constant worry and praying for, above all else, healthy babies. As both Daddy and I loved great surprises and felt there were few “good surprises” left in the world, with each pregnancy we decided we would not find out your gender until you each were born. With each pregnancy, in my heart I was so certain you all were girls. I had so many beautiful dreams about my babies and as I watched our beautiful family grow those dreams became our reality. Kind of.
So much of what has become our reality I never could have dreamed of. For starters--you all were boys! While I have no idea why, I just never thought I would end up with all boys. All girls? Maybe. Mostly, I thought I would have a couple of each, but never did I think I would have all boys. Now, I can’t picture it any other way. Secondly, I never--not in a million years--could have fathomed how wildly I would love you all--a love that is so deep it literally, physically, hurts. Growing up Maama and Gumpy would always tell me “You have no idea...one day you will, but right now you have no idea” regarding how much they loved me. And like most things in life, boy were they right. One day, when you each become a Dad (if you choose) you will get it, but for now...you have absolutely no idea! You each are Daddy's and my greatest blessings. And some of what has become our reality I just never would have dreamed of, because, let’s be honest, who dreams about having chronically ill or medically-complicated kids?
And so here I stand today, a “boy-mom” forced to play nurse and doctor and therapist in our house for each of you. Forced to strictly tell you to take your medicine that makes you nauseous and gag first thing every morning and last thing every night. Forced to watch you try so hard to be so BRAVE (and all three of you are, SO incredibly brave) for blood work, infusions, feeding tubes, therapy sessions...the list goes on. Forced to listen to ignorant adults make silly comments and forced to not pummel them for it. Forced to play chauffeur, but instead of shuffling you and your buddies around to movies and play dates, forced to drive you all around to endless doctors appointments, therapy sessions, infusions and pharmacy runs. Forced to fight with insurance companies so you can see the doctors you deserve and get the treatments that you need. Forced to be the one to stick you for your subcutaneous infusions at home because we thought they would make you less sick than the intravenous ones at the hospital. Forced to hold you down while they wove the feeding tube back up through your nose, down your throat and into your belly time and time again. Forced to listen to you scream out of fear and discomfort while they did so. Forced to point out to you that there are children much sicker than you, so that you remain grateful for all of the blessings we do have and never feel sorry for yourself. Forced to remind myself the same. Forced to pretend that I don’t feel sorry for you, so you remain optimistic and upbeat with a grateful heart. Forced to live with the fact that I can’t fix this, that I can’t make you each better, that I can’t trade places with you. Forced to make sure you know and believe in the deepest parts of your heart and soul that you are a wonderful, special gift despite the rage born from PANDAS. Forced to make sure you believe you are heard and understood--that you have a strong voice that everyone wants to listen to despite your Childhood Apraxia of Speech. Forced to keep my brave face on, as we wait for lab work, test results or MRI readings which could have told us a story much too scary to even fathom. Forced to reach to the depths of my soul to be strong and patient with you after the longest of days. Forced to learn so much more about bravery, resilience and courage from my young children--from the three of you--than I’ve learned from nearly all adults (save Auntie Jessie).
And here I stand with you--my three sons--ages 8, 5, and 3, quite simply, as my heroes, my inspiration, and my purpose. No, my dear boys, you are not what I thought you would be...but oh, my loves, you each are so much better.
And so, today, in honor of you--my three boys--and your extraordinary bravery, we launch Brave Comfort as a way of helping other families who have been forced to deal with a life that is not what they thought it would be. That has been forced to deal with significant or chronic medical conditions, or disAbilities. And who have made the choice to be BRAVE and thrive in the face of their reality. For all of these families, may Brave Comfort provide you the COMFORT you need so that you or the one you love can continue to be BRAVE!