Our Head & Heart Became Friends
Katherine Dobbs, a fellow special needs mom, shares her journey through the Unknown and her bravery to accept the gift of more!
Written by, Katherine Dobbs
“Certainly, sons are a gift from the LORD, the fruit of the womb, a reward. Like arrows in the hand of a warrior are the sons born in one’s youth. Blessed is the man who has filled his quiver with them.” Psalm 127:3-5
My husband is the youngest of eight, and I flew solo. Our families of origin looked very different, and through dating, engagement, and marriage we solidified our understanding of what we wanted the home we created together to look like. My husband tempered our eagerness to conceive with a steady reassurance that children were a gift and not a guarantee. We can make plans, but ultimately God will lead the way. We celebrated a winter wedding, and soon after returning from our honeymoon we joyfully discovered we were pregnant!
The next nine months were spent gushing about hopes of what the future would hold, and reading every book possible to make sure we were ready to bring those seeds of hope to full bloom. However, those seeds remained dormant for quite some time after the birth of our son Fulton, as we transferred to multiple hospitals, endured gut wrenching medical trauma watching our screaming child need IV’s in his forehead when no other veins would cooperate, standing over him while hooked up to a ventilator waiting for his airway to open, and watch him thrash in absolute agony after breaking both femurs from a brittle bone disease. The medical landmines were constant, and each day I treaded with hypervigilance and emotional eating.
After four years the medical terrain became more predictable as Fulton's list of symptoms started to stay at a constant and not continue to take up more reams of paper. We began to catch our breath and dream again. We wanted more children, but as parents of medically complex children know, this isn't an easy discernment. For starters, our son was undiagnosed, so we didn't know if we were carriers of this mystery. It was so hard to stomach the idea of watching another child held down for multiple blood draws and bone castings if our DNA paved the way for this. We were open to adoption and pregnancy, and decided to really discern deeply pregnancy, since my window for this was closing sooner than adoption.
I asked my circle of friends if they could introduce us to anyone, they knew who continued to have children after having a medically complex child, and none could be found. However, I noticed on social media over a handful of families that matched this quest, and hope started to fill my heart. It was crucial to vocalize our concerns, the thought of another child stirred viscerally up in our minds, hearts and bodies. A constant question was: "How can we manage so many ER visits, the lifestyle and medical needs of Fulton, while also retraining our bandwidth for loving another?" "Could we emotionally endure more trauma?" We knew we needed more help and made small steps weekly to open our home and hearts to love at a greater capacity.
Digging in the soil of our heart to find answers, led me to discover some ickiness that I needed to root out, for the desires He planted in me, to grow. That yuck was the root sin of vanity. Oh, what a shock it is to look at your life after realizing these were the lenses I'd been wearing for so long. I began to see this vanity had me stuck in burdening myself in how I thought others would judge me if I had another child. I felt so much shame and guilt that was fueled by the lies of the culture of death, we forget, we are daily breathing in.
Through prayer and spiritual direction, I began to seek after the Lord's heart and not the world. My need to please is fierce, and both learning to advocate for my family and discern more children was my refiner's fire. The more I sought His heart, the more He showed me He was championing mine. My heart began to open in trust to Him more as I asked for His provision. He is a Father of abundance, and His provision greeted my husband and I both at our head and heart like a Christmas feast. Our son's geneticist emailed that two gene mutations were found, and both are De Novo (unique to Fulton, and not found in his parents), and match his symptoms. We were not used to getting answers, so we waited in awe, pinching ourselves to make sure this was not a mirage, and waiting for our hearts to catch up to speed.
A few weeks later, we invited a friend over with his girlfriend for lunch. In the middle of our meal, this delightful young woman declared " I don't know if you know this, but I was a pediatric ER nurse for 15 years, if you'd ever like help with your son." My jaw dropped, and I immediately leaned over to Fulton and giggled " Fulton, you've just met your new best friend!". That week we met to discuss details, and she started as his PCA (personal care assistant). Her loving presence in our home was the wind our sails needed for our head and heart to kiss and decide it is time.
All glory to God, this November we joyfully discovered we are pregnant! Yes, fear has knocked at the door of my heart, but I have decided to greet gratitude instead, and leave fear out in the cold. I'm done making far reaching plans. I'm not sure what our future holds, but I trust Him and will continue to meet Him in the present moment. I do hope for a healthy child, but I am absolutely delighted in whoever God has blessed us with. Our son's journey instead of intimidating me, is reminding me of our strength and tools we have now for the journey ahead. I delight in the thought of him sitting in his wheelchair holding our new little one, while he sits with a look of awe and wonder at this new companion that just entered his life!
—Katherine Dobbs