A sweet woman who spends time with us called me out this morning. I thought I was going to crawl into a hole and stay there forever. What she was saying was absolutely correct and she delivered her words with so much grace and kindness. I was a little (ok, a lot) embarrassed as my mind processed through her words, gleaning from her insight.
Bernadette is almost two. What a wild thought! I can remember this time two years ago being pregnant with her worried she wouldn’t even make it into this world. There were so many unknowns, so many unanswered questions, so many wait and sees. It was tough. But, she made it, maybe a little bluer than we all would have liked as she flew into world, but she made it. Her heart made it through delivery and through two major surgeries. And then she made it through RSV. Two cold and flu seasons. Through pneumonia and ear infections and two sisters. She is one tough kid.
I confessed this morning that I often feel like a first time mom with her. Most days I don’t feel equipped to raise her. Where would I have even started with feeding without someone coming into my home and working with us to show us all the tips and tricks, make suggestions, patiently try new things, and encourage us along the way. It’s been amazing to have people come in and give me so many pointers. As I sat there this morning and said how it’s felt so much like the first time I became a mom, this sweet woman kindly spoke words of wisdom into my heart.
She looked over at me and down at Bernadette and said “You’ve got to stop thinking of yourself like that.” I looked over at her, my eyes wide with shock, curious what she would say next.
She went on to remind me that I am not a first time mom, that I have two other girls. It’s time to stop saying that and get out of that mindset. Sure, things have felt foreign, starting out with so much trauma and chaos and hospital stays and illnesses and feeding issues. Each one, a completely new experience to me.
The circumstances we walked through in the beginning were all consuming. I brought home a medically fragile infant who was not so strong. Strong in the sense she had survived heart surgeries, but her system was so fragile, in need of time spent healing. Her lungs were weak, her body putting all of it’s energy into staying alive. She didn’t have any energy leftover to put into milestones or eating or anything really. At that point, it was merely a fact of survival.
That’s where all my time and energy went, keeping her safe, as best as I could as her mother. Giving her body the time and space to heal and to strengthen. And now? She is so much stronger than that tiny infant I brought home after heart surgeries and RSV. She is thriving. She is working on milestones in her own way and in her own timing. She has the capacity to give other areas attention that she couldn’t before. My job is shifting into giving her space and time to practice new skills, to teach her new things and give her opportunity to explore.
She continued on, saying it’s important for me to see her as one of the girls. Not the medically fragile infant I once brought home. Straight to the heart I felt her words go. I thought I was “treating her like one of the girls.”
I looked down at Bernadette, happily putting small objects into a container, something she has mastered in a short amount of time. I thought about her new skills of being up on her hands and feet in a downward dog position. I thought about her climbing into her sisters’ chair the other day. The more she’s babbling and interacting. All the food she eats. She’s not a baby anymore. She’s a toddler. A toddler with her own opinions, likes and dislikes, preferences. She throws a fit when her sisters take something from her and screams at them to get it back. She passes out the sweetest cuddles and gives a pat on the back. She blows kisses and waves goodbye. She is a little person with so much personality coming through. I began to question whether or not I see her, really truly see her as a toddler ready to explore the world in front of her.
I flashed back to a time someone told me she would never be able to communicate. Or the time someone else said she is Down syndrome without recognizing she actually is a person first, just like the other people in this family. I thought to all the unborn babies who were deemed unworthy of life because of a Down syndrome diagnosis. I flashed back to comments I have read on social media other mothers have heard regarding their child, such as “she’ll live with you forever.” Or, “She won’t be able to have a job.” So many comments from people who have possibly never had a person with Down syndrome in their live’s to love.
Tears formed in the corners of my eyes. The realization that society does not see these people as individuals but only as their diagnosis not understanding their ability for success, is holding them back. Something so many other mamas and people who love someone dearly with Down syndrome are fighting against.
I want to provide space for my daughter to be successful, however that looks for her. Whether that means she walks at three, lives at home with me the rest of her life, kisses me goodbye on her first day at college, whatever it may be, I want to fully support her in that. I want her to know she has God-given dreams. She too, has been created for a purpose.
She is one of my girls. I see her incredible strength, her deep set beauty, her fiery personality. Things may have felt foreign in the beginning of her life, but that will not hold us back. She is one of my girls, my budding third-born, ready to take on the world.
Her life is beautiful beyond words.