Hi everyone! I hope you are well and had a great week. Today I have another huge treat for you all. This week's guest writer is Tina Beauvais, an amazing mom and advocate for people and families with disabilities. Tina has a Tik Tok account with 925.5k followers (@tinab_noel_lily) and an Instagram with 13.k followers (@disabilityinclusioneducator). With these numbers she has made an incredible impact and I am so grateful to her for agreeing to write an entry for us today. Then, next week, Tina's daughter, Lily, who is around my age, will write an entry for next week. This is one amazing family, so please enjoy. Thank you for reading and have an amazing week.
"Isolation, loneliness and fear are three words I would use at times to describe my life as a mother. There are times when I have felt like I am the only one going through my brand of motherhood struggles. The saying about making the decision to have a chid is choosing to let a piece of your heart forever walk outside of you is so true. You just want to love, protect and care for that piece or pieces of your heart so much. For me I don’t know motherhood without tubes and trials. My first baby was born with a disability and this only added to those challenging feelings. I’ll be honest the road I have walked as a mother of a child with a disability has been dark, challenging and oh so lonely at times.
I was just a baby myself when I gave birth to a very fragile baby.
I was forced to grow up quickly.
My journey of motherhood started when I gave birth to a medially complex child. The day Noel was born was when the trials started. She was air flighted the day after she was born to a larger Children’s Hospital. We came home two weeks later. There I was all alone with a two week old baby, with a feeding tube in her nose, on oxygen and with hundreds of unanswered question.
I was planning a trip to Italy and I woke up in Holland. “Holland” a term I like to use from a poem I read early on in our journey. “Welcome to Holland” is a poem the relates the journey of raising a child with a disability to that of having landed in Holland instead of the sought after destination of Italy. It goes on to explain that Holland is a beautiful place it’s just different than Italy; less flashy.
A little less “crowded” than Italy I would say. Not as many people share the experience of raising a child with special needs and it’s even harder to find someone with the same diagnosis. You feel as though you’re walking down uncharted territory.
This journey through Holland inspite of the hard emotions has also taught me so much; how to love deeply, how to appreciate the moment, and how to not worry about anything but to pray about everything.
As Noel grew so did her medical complications. She received a diagnosis of Muscular Dystrophy at 5 months old. With that diagnosis brought many new medical devices and interventions. As I sit here and write this today Noel is 14 and has had everything from a ventilator to a Central line, and everything in between. She has seen countless therapists and specialist and yet she’s also been to the tops of Mountains and had her toes in the sand on beaches.
I am stronger now than I even knew possible, but that strength was acquired through fire. The Lord knew what he was doing when He blessed me with Noel; He knew my journey with her would draw me closer to Him.
I am thankful for every step I’ve gone through on this journey with Noel.
It’s enabled me to love my other 4 children even more. I think all of our stories of motherhood look far different from anything we had ever planned. But I read this quote once that has really stuck with me; “Sometimes you have to let go of the picture of what you thought life would be like and learn to find joy in the story that you are living.” I’ve learned to enjoy this story of Motherhood that was written for me, no matter how challenging it can be at times. I have reached out and sought out community to battle the feeling of isolation and loneliness and I have learned to battle my fears and what if’s through prayer.
This is how I can simply sum it up, You can’t have the rainbows without the rain, and even if it’s raining you can still choose to dance in the rain. "