“May we believe that our broken vessels of motherhood could offer our children things that perfect motherhood could never give them.” – Katherine Wolf – Hope Heals
Just like YOU mama.
As I lay here in bed at 3am, my mind wanders and it races. I think about my boys, I think about their near future and their past and I just cry. My heart is shattered because we are connected. My boys and I are connected on a level that costs so much. I have so much to be thankful for in the life of my children and yet I deal with new losses frequently. I am torn between those two places often, tossed around sometimes by the guilt that I should feel differently.
I was just like YOU mama. I dreamt of motherhood as a child when I played house and dreamt of the man of my dreams that I’d hopefully find someday. I found him, and like all other couples, we started a family. That precious life entered the world and I finally received the title ‘Mother’.
Just like YOU mama. Our parenting journey was fairly normal and exciting (aside from multiple ear infections), for the first year. Ultrasounds, a baby shower, pictures, a birthday, stories, bath time, teething, nursing – all the normal things. Then, suddenly, the baby we had and knew changed, but our love for him did not. We were plummeted into a whirlwind of testing and doctor appointments. Followed by endless research. Even after a diagnosis, our determination grew stronger. My pain and grief as a mother became my fuel. The sweet, loving, hopping, happy, sometimes tantrum throwing, chronically ill toddler continued to grow.
With each passing year there was an urgency to meet milestones, get the correct intervention and therapies before “windows closed”, give treatments and become more educated on the latest things. We fumbled through, with little time to grieve, and we adapted.
In the midst of this whirlwind, we were given the news that we were expecting another baby. Another precious life, and dare I say, a hope for some light. I was relieved at the thought that Luke would likely have someone to watch over him as he aged, someone to protect him. We’d get to experience normal parenting. I was worried about how I’d have space to love another little person with so many demands. Just like you mama, I began dreaming of holding that baby, dreaming about the sporting events, possible grandchildren, joy, conversations between me and my child and so many other things that I hadn’t been able to experience.
One day, in a follow up ultrasound, I saw all those things disappear before my very eyes and our hearts were shattered once again. We discovered that our second baby had severe brain damage from an unknown virus that attacked his brain in the womb. This was even bigger than Autism. I fell into a depression, but couldn’t stay there. There was no time for grief, only time to suit up! There is rarely time for grief, rest, anger, or much else in the life of a special needs mother and father. There is barely time to bandage yourself before the next obstacle! You have to do it on the run.
So, just like YOU mama, the time came and I labored and cried and worked to bring that sweet little life into this world. He was strong and independent of help even though he had been through so much in what was supposed to be a safe place (the womb). He lacked color, but quickly gained momentum on his own. They quickly took him to the NICU. Our love and excitement for him was so strong. He wanted to be here, he deserved to be here. We hit the ground running-encountering one diagnosis after another. Milestones missed, surgeries performed, tears poured out and then quickly wiped away.
Just like YOU mama, I was too busy loving and raising my little ones to get carried away with what was “normal” around me. Just like YOU mama, I still had parties, celebrated milestones we did hit, connections we made, made cakes, had Christmas, wiped tears, read books, tended to sick babies (only to a much higher degree), enrolled them in school, went for walks in the park, pushed them on a swing (for as long as we could), even went on a couple of trips. The difference is that, as I have done these things, they have grown harder, not easier. My babies will not leave the nest and I will continue to age. The sacrifice of a mother knows no age, time or limit of energy.
That once small gap, that I barely noticed between my boys and their peers or us and other couples, was now growing. It was small at first and could be brushed aside or overlooked. Not now. Not anymore. It’s been years since that gap was small. Years that I’ve watched other children learn to walk, speak, learn to read, write, tell time, go to school, make friends, play in sports, get a driver’s license and enroll in college. I will have to shut my heart off for the ones coming- the weddings, the babies, the careers.
My children’s success has a different measuring stick. It’s a measuring stick that considers standards set by them and those who know them, but ultimately by God. He determines their accomplishments and my husband and I facilitate them. The community and our friends and family are the cheering section. Luke and Matthew (our sons) are two of the most amazing people I’ve ever met. They endure because they have to – and do it with joy.
In people’s ignorance they say “they don’t know any different, it’s always been this way”. They say that to bring relief to themselves. Our boys know they are different, they know when people are afraid, they know when children avoid them, they know their physical pain, surgeries and seizures. They are “unintentional missionaries”.
As we have endured unsolicited advice, judgment, piercing stares, and whispers…I have thought “I was just like YOU mama. I had two babies. These big boys that you or your children stare at, – were my babies once. Still are. I too have dreams and hopes for my children.” I was just like YOU, but didn’t know what my journey was going to be. I loved them anyway without a second thought. I give it my all.
With each transition I try digging in my heals to hold on to where they are presently. I squint my eyes and try to avoid the forced movement forward. I cry inside thinking “just let them be”! Elementary meant other kids and separation, training staff, letting go. Jr high meant no more music, sitting in with normal peers for story time, recess, library and music, being treated his developmental age, no playground equipment. I have watched the gap grow, but LOVE is a bridge beyond any age, culture or amount of suffering. High school has meant facing a huge developmental gap, but being the same size as typical peers and we’ve found an amazing teacher who has given me so much relief. Now comes the adult program, guardianship, loss of pediatric specialists who’ve held or hands, graduation (which looks different), no friends at school, just a work program, no parties, dances, cupcakes or special equipment that brings joy.
I have felt at times like a watermelon being pushed through a straw. There’s just no way. So, 4:30 am and lady in bed while the tears flood. I try to keep holding on so the gap doesn’t widen anymore and so my boys can remain in a place they understand.
The term “special” used to frustrate me. It came from a heart usually of pity. Now, I love it! They are special! It’s unlike anything else and transcends culture, age, status. Their impact in this world has reached far and continues to. It has reached far to many people giving inspiration and creating gratitude. In a more permanent and impactful way, it has also reached deeply into my heart and soul and changed me and my husband. With that change has come a passion to speak up for them and those like them, a scarred heart, a stronger person, less blind spots…but still a Mama. ❤
We all long for something different don’t we. The restlessness in us, I know, is an eternal thing. I have a mysterious aching joy. We all must wrestle to find contentment in our journey and when we find it- what a treasure it is. We have each been equipped for our unique purpose. No more and no less. Live it out, do it well, and build it all with LOVE.