It’s a great honor to introduce you to Kathleen who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Kathleen is a wife and mama of two sweet girls. Her oldest daughter, Teagan, received an incredibly rare genetic diagnosis of Trisomy 12p just before her first birthday. Teagan’s diagnosis has been incredibly life changing and has made life incredibly challenging. Kathleen loves her daughter fiercely and will fight to the ends of the earth advocating on her behalf, but this journey has also caused Kathleen to question her faith like never before. Friends, this post is ridiculously moving. I cried the first time I read it, and continue to be deeply moved with every subsequent read. When Kathleen submitted her post, she offered to tone down the anger and uncertainty given the spirit of my blog. I reassured her, “This is so good. So beautiful. I don’t even have words. It’s okay to question. It’s okay.” You must read Kathleen’s story. You simply must. This post embodies everything I ever envisioned this series to be. Thank you, Kathleen.
My daughter was six months old when we first suspected something was wrong. It started innocently enough – our daycare provider mentioned that Teagan ought to be sitting up by now. We knew she had low muscle tone, but every doctor we’d spoken with had either brushed it off or attributed it to her difficult birth (her lungs were blocked and she didn’t get air for a few minutes). We figured it stemmed from that, and made an appointment with a physical therapist. Not incredibly worried.
As the months passed since that first appointment, the developmental delays began to pile up. My husband kept a positive outlook, our parents kept a positive outlook, and our friends would say things like “But she’ll be fine, right?” Call it mother’s intuition – I knew bad news was coming.
We began an onslaught of appointments to try and figure out what this elusive issue was. We visited neurologists, therapists, and early childhood specialists; we ran MRIs, EEGs and every test under the sun.
And we prayed constantly. I had a strong Catholic upbringing, and God was whom I had turned to with every hope, every fear, every gratitude for as long as I can remember. I prayed it was something we could overcome. Prayed it was something that would still allow her to have a normal life. Prayed that God would NOT let something be wrong with my perfect, sweet, lovely baby girl.
It was our second neurologist who suggested we do genetic testing. I will never forget that phone call, just before Teagan turned one, with the diagnosis: Trisomy 12p, the mosaic version. A portion of Teagan’s cells had extra material on the P arm of the 12th chromosome. That teeny tiny, itty bitty blip of material was causing – and would continue to cause – enormous problems. Our diagnosis was incredibly rare. Incredibly life changing. Incredibly limiting.
The days after the diagnosis were a blur of tears, snuggles, confusion and anger. Tears because I couldn’t believe I was being told that this wonderful little being in my arms had something “wrong” with her. Snuggles because I loved her so much and wasn’t going to let her down. Confusion because no one would give me a straight answer…will she be able to walk? We don’t know. Will she go to normal school? We don’t know. Will she have a good quality of life? We’ll have to wait and see. And anger because I didn’t understand how this could have happened. I thought God was watching out for me! I’m not perfect, but I’m a good person…and forget about me, what about HER?! She is 100% innocent! I was furious. And there was no one to be mad at. Except God.
I would head to work in the morning and scream at God for the entire drive. I would feel better during the day; when I was at work I actually knew what to do with myself. I would spend my evenings and days off with my sweet baby and decide the doctors and therapists were nuts, because my daughter was PERFECT, and they had to be mistaken.
My husband would research, which often times made us feel more confused and alone. The most complete study we found on Trisomy 12p was thirty years old, and listed forty confirmed cases. Forty. Of all the people in the world now, and of all the people who have ever been…forty.
And together, the three of us would progress. To the next doctor’s appointment. To the next brain scan. To the next therapy session. To the next developmental milestone. They came late. They came slowly. But when they did come, we would rejoice. This is still the way we operate today.
Needless to say, parenting has not been what I had expected. I didn’t expect to be a special mama. I didn’t expect to forego music and dance classes in lieu of physical therapy and speech sessions. I didn’t expect I would purposely use sign language in public so it was clear to everyone that something is different. I didn’t expect my daughter would ask me to sing Row Row twenty times a day because it is one of the few things she can communicate and it makes her feel connected. I didn’t expect to worry she would spend her school years eating lunch by herself. I didn’t expect to fear that someday she’ll live in a home and no one will come to visit her on Christmas. I didn’t expect to find it so hard to talk to my children about God. I didn’t expect I could be in a room full of friends and laughing children and feel completely alone.
I also didn’t expect to find out so much about myself. That I would be able to work so hard and love so fiercely. That I would become a unique kind of leader. That I would know when to fight for my daughter. That I would develop a level of compassion deeper than I knew possible. And I didn’t expect that the hardest worker I’ve ever known would be my own tiny child. It took five months to teach Teagan to roll over, something most babies don’t have to be taught. But she did it. It took three different physical therapists and inserts in her shoes to teach Teagan to walk. But she did it. She signs. She is working on talking. She is smart and stubborn and wonderful. And she loves. Oh how she loves, with her huge smiles and gentle touches, her sweet kisses and full body hugs.
There is a lot of confusion in my life, which you’ve probably gathered by now (warning: here is the part where I sound like a self-righteous brat). I feel incredibly lucky to have the determined, loving man I chose to partner with for life. And I know that were the bonds with some of my family members and friends not as strong as they are, I would feel more alone and less supported than I do. But I don’t give God credit for that. I did that. I feel very much self reliant. Maybe someday I’ll look back and see his hand in these “blessings” – but not yet. I’m still pissed.
I can go from hating God, to begging him for help, to deciding I don’t believe in him, to thanking him for my daughters, in the span of about five minutes. If I will ever believe the way I used to remains to be seen. I’m working on it.
The mantra I repeat to myself for my own broken faith, and for my role as a special mama, is a quote from Rudyard Kipling:
“God could not be everywhere, and therefore he made mothers.”
Well. I don’t know if it’s true. It doesn’t give any clarity as to why God would allow my daughter to have such a challenging life. But it does sum up how I feel about my duties as Teagan’s mom, now and as she grows older.
To protect her from harm.
To fight for her and the rights she deserves.
To be proactive about anything that will help her progress.
To push her to try harder.
To teach her to be an advocate for herself.
To let her know there is always someone behind her.
To make her possibilities limitless.
To create an environment where she feels completely surrounded in love.
I don’t know if this feeling came from God. My faith is completely broken, and at this moment, I can’t say whether or not I believe in him. But I’m not going to stop praying…hopefully that counts for something. And I’m not going to stop working, relentlessly, with my sweet little girl.
Kathleen is an Iowa transplant with a passion for wine, the Cyclones, Harry Potter, and most of all, her family. She lives in the Twin Cities suburbs where she enjoys getting outside with her husband and two daughters as often as possible, the way good Minnesotans do. She began blogging shortly after her oldest daughter’s rare genetic disability diagnosis in 2012 as a way to cope with a roller coaster of emotions and share her family’s story. You can read more about the Trisomy 12p diagnosis on her blog at rockinglion.wordpress.com.
This post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 13 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. At the bottom of the post, you’ll find all guest posts listed and linked for easy reading!