It’s a great honor to introduce you to Dawn who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Dawn’s daughter, Taryn, has a rare genetic abnormality which has resulted in severe neurological issues, severe intellectual/developmental disabilities, neuromuscular issues, G.I. issues, common variable immune deficiency, vision issues, and cardiac concerns. Dawn is a strong mama with a big, tender heart. She loves her daughter mightily and has fought to the ends of the earth advocating on her behalf. Dawn hopes that she is “a good enough mom for this precious girl.” I don’t know Dawn, but I can tell you with certainty that when I received this photograph of her with Taryn, I was convinced from the warmth in her eyes and her calm, but confident demeanor, that this is one amazing, incredible woman, one amazing, incredible mama. This is the first time Dawn is telling her story in written form. Thank you, Dawn, for sharing with us. May you be blessed in the sharing. 

Every year, Mother’s Day affects me differently. Some years I embrace the celebration and I love to do all the traditional things – brunch and time together with extended family (mainly my husband’s side) – and other times I struggle with the whole idea and just want low key and no pressure. I think it comes from the fact that I don’t have my own Mom to celebrate, or even the memories of a loving relationship with a Mom to reflect back on. As Mom to my beautiful daughter, Taryn, who has so many complicated medical conditions and intellectual delays, the rollercoaster we are on literally takes me up and down day after day. This year has been a hard year, and I find myself not wanting to celebrate much.

When my husband and I were ready to start a family, I felt excited at embracing the idea of being a Mom, and hopefully to be a more loving and caring one than I had. Our journey took quite a turn though. At 26 weeks gestation, we learned during the ultrasound that our baby was extremely small, had several heart defects and some sort of mass in her abdomen. I was also surprised to learn I had begun preterm labor which resulted in many visits to the ER, a lot of terbutaline shots to stop the labor and eventually an admission to the hospital at 34 weeks for complete bed rest and an emergency delivery at 35 weeks. I realize what a whirlwind it was between the time we found out about our baby’s issues in utero to the delivery that I think I was numb throughout that whole time. I’m not really sure I ever had a chance to process what was happening or what we were about to have before us.

Taryn Joy, our beautiful 3 pound 12 ounce bundle of Joy was here! Due to Taryn’s medical needs, she was assessed in the OR and I was able to see her for just a moment before they took her straight to the NICU. I had already made Chris promise to go with her so he could be there with her and of course report every single detail back to me. Once I was moved to recovery, it felt like forever before Chris returned with the Neonatologist for an update. Taryn was doing well, but they were waiting and watching a lot so we would know more as time went on. My room was three floors down from the NICU and the next morning I was so impatient to get up and see her. I hadn’t even had a chance to hold her yet and it felt like so much might have happened overnight. When I finally got up there, there was a moment of pause. She was so tiny and she had all these tubes and wires, I had no idea how to even pick her up or hold her. When the nurse got her out of the isolette and laid her in my arms for the first time, I felt love I never knew before. Having to learn how to feed her and do the temperature, weight, and diaper change became my new normal every three hours for the next few weeks. We were so thankful that her heart defects did not present as significant of an issue as they had expected, and no open heart surgery was needed. We were mainly focused on her feeding and gaining weight. After spending five weeks in the NICU, we were finally able to bring her home. Little did I know how scary and real it would soon become.

Without monitors to tell me she was ok, I found myself panicked all the time if she was breathing, if she was eating ok, if she was eating enough, if I was able to care for this tiny little person. I also realized how alone I felt. Sure, Chris was amazing. But this is the time new moms have their moms to turn to for advice, support or even just reassurance, and without that someone to turn to I began to doubt if I could be the mom this baby needed. Nobody showed me how to do this, how to be a Mom, much less a Mom to a baby who needs even more love and care than we were expecting. All the books I read throughout my pregnancy did not cover this scenario. This is where I had to turn to Faith and I had to work on my belief that I was given this child because I could do this, or at the very least I could learn how to do this.

I was so grateful I was able to be a stay at home mom because soon our lives became dictated by doctors’ appointments, therapies and surgeries. The first few years we focused on trying to address her medical needs all the while giving her the early interventions to get her development on track. We were heartbroken when it became clear her development was not catching up. We soon learned that there were more issues with Taryn’s brain structure and that her cognitive and developmental outlook were now in question. We intensified her physical therapy, occupational therapy and speech therapy, hoping we could help her learn whatever skills are possible. Despite the struggles, Taryn managed to surprise us along the way and we seized every opportunity to celebrate her achievements – her first steps at age three, trick or treating with neighborhood families and Taryn using a switch device to say “trick or treat,” to her having an augmentative communication device to make choices. When we think about how much is working against her medically, to see her grow, even if it’s small at times, is the Joy that reminds us of the beauty this child brings to the world.

As Taryn grew, we learned that her medical conditions were far greater than we ever could have imagined. We found that Taryn has a rare genetic abnormality which has resulted in severe neurological issues including epilepsy, severe intellectual/developmental disabilities, neuromuscular issues, G.I. issues, common variable immune deficiency, vision issues, and cardiac concerns. We balance visits among 13 doctors, immunoglobulin IV treatments every 3 weeks, several major surgeries and more questions than answers. I have had to learn how to be a strong advocate for her, learning how to talk with medical professionals, navigate insurance companies, manage many medications, find the right school environment, all while trying to make sure I appreciate each precious moment and that in addition to being her caregiver, that I can also just be her Mom. Taryn will need full-time caregiving each and every day for the rest of her life, so we are constantly adjusting our world and life to ensure her needs are met and she has the best life possible.

When I sat down to write this post, it made me take a pause and realize just how much this beautiful angel has tapped into a part of my heart and soul I didn’t realize was there. Her laughter and the love she shows inspires and grows my heart day after day, and without question there is nothing I wouldn’t do for her. There is something so incredibly powerful about her ability to communicate without words. Her touch, her smile, and her beautiful eyes say so much.

I am often told that from the outside, I look like I have this all down and that I make this look easy. I think sometimes that makes it hard for those on the outside to really understand just how hard and challenging our world is. Most of the time I love that I am someone people count on to get things done, to organize everything and who can help problem solve, but sometimes, some days, I just can’t. It’s hard to feel warm and fuzzy all the time when you know in reality that given all the medical conditions my daughter faces, I will most likely have to say goodbye to her. With every new medical problem, that reality comes full force at me and I am reminded every day of the fragility before me. Each day I have to work so hard internally to put forth a strong, happy and resilient front so that we can continue to tackle the hardships before us, while also taking each and every moment of joy and grace that Taryn gives us. Let me just say how exhausting it is to constantly be switching between fear, sadness, anger, joy, gratitude and love every hour of every day. I struggle with having Faith that whatever God’s plan is, that it will be ok. I struggle with understanding how my own mother couldn’t find a love in me like I have with Taryn. And every day I hope that I am a good enough Mom for this precious girl.

But then, like I have most of my life, I pick myself up and I use my hurt, anger, fear and LOVE to drive me to do everything I can for Taryn. Because the truth is, Taryn has given me more in her 11 years than I ever could have imagined. She has given me purpose, taught me a level of patience and perseverance I had no idea I possessed, and opened my heart and soul up to a love I have never experienced. I watch her struggle every day to do basic functions and adapt because there are a lot of functions she cannot do. She endures pain beyond what we can imagine, and more medical interventions than most people do in ten lifetimes. Yet she is so happy and loving and she touches those around her in so many ways. I am constantly in awe of her. I truly am grateful to have her and for every moment, the good and the hard. My husband has been a huge blessing and support in his unwavering commitment to our family, his love for Taryn; his Faith is what I turn to in order to draw strength and comfort. I often wonder if God knew I needed Taryn more than she perhaps needed me, and I try to hold on to that feeling when I am faced with the worry of a life without Taryn.

So this Mothers Day, I relished in Taryn’s giggles, savored the hugs and kisses and embraced the rare day of calm.

 

 

 

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 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!