“To every person walking through a major life-changing situation, you need to allow this space in your life to exist.”
Jessica
Nourish your whole family.
“To every person walking through a major life-changing situation, you need to allow this space in your life to exist.”
This is Dani and her gorgeous two-year old daughter. Days before Dani was scheduled to undergo major brain surgery to remove a benign but growing tumor, Dani discovered she was pregnant. Faced with an unimaginable choice, she opted to continue with her pregnancy and put the brain surgery on hold. I hope you are as inspired by her determination, recovery, and healing in the face of (too many) massive obstacles as I am.
From Dani:
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This is Adi. She is a smart, bright, curious, and wonderful ray of sunshine to everyone who meets her. She was born with profound hearing loss, and even though technology is advancing, it is unlikely three year-old Adi will ever hear without an aid of some sort. In fact, recent hearing tests have concluded that her hearing is deteriorating in spite of the latest technological and medical advancements.
Even though genetics cause hearing loss about 50% of the time, the cause for Adi’s moderate to severe hearing loss is completely unknown.
Hearing aids are costly. The price for one aid is between $4,000. Imagine putting that on a toddler’s head. Imagine communicating to your child, who cannot hear, that the hearing aid is precious and needs to be cared for with gentleness and the utmost care. Imagine the anxiety and heavy burden of cost associated with the process of helping your child hear. Adi attends speech therapy twice a week, and gets her hearing tested once a month.
The kicker in all of this is insurance doesn’t cover a dime. Hearing aids are lumped together in the same category as vision, except there is no hearing aid “plan”. Adi’s parents get resourceful to cover her ever-changing needs, and continue to hope and search for a way for Adi to hear without a hearing aid.
Focusing on the small victories help keep Adi’s family’s spirits up, even while they face the monumental task of helping their daughter hear. The small sounds we take for granted? Adi discovers them, brand new, every day.
Adi’s mom shared this great moment with us.
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Do you have a #tinytriumph you want to share? Do you think your little moments of victory might inspire other families to keep going? Do you want to find out how to contribute? Click here to learn more.
This is my friend, Joey Papa, and his daughter, Canaan. Over the last 16 years, our lives have intersected at the most random and perfect places. He’s always full of laughter, exuberance, boundless creativity, and deep feelings. When E was born, Joey and his amazing wife, Nikki, prayed for and loved us well, even in the midst of their own daughter’s (often devastating) health crisis. I know we are not the only ones The Papas have encouraged over the years, and they serve as a beacon of hope in the midst of great unknowns.
The Papa family is a tribe of warriors. All SEVEN of them. Dedicated. Strong. Life-giving. Life-loving. Joyful. Fierce. Resilient. And this is one thing Joey won’t tell you, but I will: He lived in his daughter’s room for months. He set up his office next to her crib and cared for her every need.
Joey’s sweet little girl, Canaan, has been in and out of the hospital her whole life. She has some neurological complications, and her lungs have a hard time keeping up with the rest of her body, requiring frequent hospital stays.
From Joey: “This is Canaan and me waiting for discharge papers from Children’s Hospital of Wisconsin. She was in and out of the ICU for three weeks with a lung infection. There is nothing greater than jailbreaking my little girl from the hospital. She screams with joy the whole way home!” |
Do you have a #tinytriumph you want to share? Do you think your little moments of victory might inspire other families to keep going? Click here to find out how.
by Carrie 7 Comments
May is Food Allergy and Celiac Disease Awareness month. I’ve been avoiding the topic because it just feels too big and all-consuming. This is something I deal with every single minute of every day as a mom to a toddler with FPIES, which in short, makes my son allergic to food. He’s just a few weeks shy of his second birthday and has exactly 17 foods he can safely consume.
I mention his food allergies often on social media. I’ve written about it here and over on The Leaky Boob. I sometimes get lost in the specific restrictions and frustrations FPIES inflicts on our little family. I start to resent how profoundly our lives are marked by this disease.
But here’s the thing about being a parent to a remarkable kid with special challenges: it has made me a better mom, and on a larger scale, a better human.
After nearly losing my son to a stroke 36 hours after he was born, I am keenly aware that his presence on this earth is a gift. When his first foods made him vomit to shock, and he was restricted to only breastmilk and a little organic coconut oil for the first 12 months of his life, I wept with relief when he passed spinach at 13 months with flying colors. It never occurred to me to be thankful for every breath, every bite of food that passes my lips, but he reminds me. His breaths, his bites, his life all serve as a reminder to be grateful.
I’ve always been fairly compassionate and empathetic, but having a son with chronic allergies has given me a sense of empathy I never knew existed. Any parent who has walked a rocky road with their kids can agree: You never look at a kid or family with special challenges the same way again. It’s no longer a detached empathy. It becomes personal to you, too.
It’s counter-intuitive. My son is allergic to food. And guess what? Food is everywhere. Play dates, people’s houses, playgrounds, toddler music class, dog food dishes, restaurant high chairs and booster seats, trash cans, floors, walls, ceilings, shopping carts, faces, hands, mouths, toys…you can’t escape it. I have to be a helicopter parent in social situations, especially when other kids are present. He has so many restrictions, and when I have the opportunity to let my guard down in a food-safe place, I do. I let my son roam within my eyesight, climb and test his limits, and explore to his heart’s desire. I encourage him to play on his own and have age-appropriate adventures and only intervene when absolutely necessary. After seeing him suffer more in two years than many will suffer in a lifetime, the minor bumps, bruises, and messes don’t seem to bother my son, so I don’t let them bother me, either.
Before becoming a parent, I often felt nervous expressing an opposing view point, or challenging authority. I feared losing friends (and even family) by becoming too opinionated or outspoken. Having a child with severe allergies makes it impossible to not offend people. I feel zero hesitation telling strangers not to touch or offer food to my son. I wipe my friends’ kids down with a wet paper towel before they play together. I speak often and loudly about respecting parents and their choices, allergies or not. I openly advocate for causes I believe in without apologizing, even when I know it will turn some people away. Most surprisingly, I don’t really care.
I call food companies and inquire about any hidden, unspecified ingredients. I inspect every space that has been deemed “safe” for my son. I question every test, procedure, medication, and diagnosis my son’s doctors try to administer, and generally annoy the crap out of them. And I have no problem educating doctors about the specifics of FPIES because most don’t know about the syndrome, and if they do, it typically isn’t much. It’s not their fault. FPIES is relatively unknown, and until this month, didn’t even have a medical diagnosis code. Considering I’ve spent the last 18 months immersed in research, and am an expert when it comes to my son, I don’t expect the doctors to have a firm grasp on his condition. I listen, I stay open, and I respect their training. Then I weigh the potential benefit and the potential harm and advocate for what is best for him.
I pumped every single day for 21 months. I fought post partum depression and PTSD while figuring out my baby’s food allergies and dealing with insurance and doctors and mounting medical bills. I went on a Total Elimination Diet and stuck to it for a year in order to keep my milk safe and allow my son’s gut to heal, even though I dreamed about Eggs Benedict and wanted to submerge myself in a vat of guacamole. I had to be disciplined. My son’s life depended on it. I also fought to keep my marriage intact, even when the pressure of that first year nearly shattered us. Owning the hardship and vulnerable places allowed me to own my strength, too.
I feel my feelings, and I can get stuck in FeelingLand. Humor is one way for me to deal with the overwhelm. I have fully embraced my snark and wit and unladylike bathroom humor. Remember that quote “the only way out is through”? I choose to get through it with laughter and sarcasm. Because it doesn’t matter HOW you get through it, it just matters that you do.
Gratitude.
Empathy.
Trust.
Tenacity.
Curiosity.
Strength.
Humor.
These are the ways FPIES and my son have made me a better mom and human. I’ll take it.
Eff you, Fpies.
Carrie