Picture Story: Forever Baby

I recently made a silly little post on Facebook bragging about the fact that, even though I would give the world to have my daughter Brooke live a normal life, I was so lucky she would always be my sweet, cuddly baby girl.

Brooke is now three years old, but at six weeks of age, she was diagnosed with a devastating condition called Aicardi syndrome, as well as cerebral palsy, epilepsy and partial blindness. These last three years have been full of trials, grieving, desperation but also love, hope, miracles and acceptance.

A friend of mine, whose precious little daughter passed on recently, called our Aicardi girls “Forever Babies.” I love that nickname. and have thought a lot about Brooke being my “Forever Baby.” And while I cannot help but feel sad when my friends’ two and three-year-old little girls are signing up for dance or getting into preschool, I look at my little Brooke and am so glad she is my “Forever Baby.” I am in no rush for her to grow up, for the older she gets, the less time we know we have with her.

I’ve realized how lucky we are to have such a special child. While much of her life is full of doctors appointments, therapies, late nights, seizures, and other hard heartbreaking realities, Brooke faces this all with her cute little grin and is so brave. There is nothing like holding her and patting her back, feeling her little hand pat me back. Or playing “Piggy Market” on her little toes and hearing her giggle. Or reading to her and having her reach up to touch my face or smile with gratitude. There truly is nothing better than that. Being her mother is the greatest honor of my life.

For the moms out there hurting with accepting their child’s diagnosis, the moms who grieve and worry about the limited time they have with their little one, for the moms who don’t know where else to turn, I have been there. I have been the one wishing my child could have a normal life and experience the happy and simple joys we all get to enjoy. But I have realized that having a special needs child can be such a blessing. And while I have my days of sorrows, mostly my life is filled with joy. Brooke has made me the mother I have always wanted to be, and while my imperfections are there, she accepts me and trusts me to take care of her the best I can. That is such a privilege. So take heart, know your efforts are remembered and that you are part of a special group of women who get to mother pure, innocent little spirits. It can be hard but it can be amazing. Life does not have to be perfect to be wonderful.

Photo submitted by Brittany Miller

About Brittany Miller

Brittany Miller is a stay at home mother to three wonderful little girls, Juliette, Audrey and Brooke. She lives in Mesa, Arizona with her devoted husband Ryan, where they are just taking it a day at a time with their three sassy princesses! Brittany is a native Arizonan and loves that Ryan is too, for there is a great family support system and lots of fun for the girls to have their cousins and grandparents live close by. Brittany has found so much joy in making memories with her children. She loves to run, bake, read, do craft projects and scrapbook, go on dates with her husband and occasional girl’s nights with her friends. Life is busy, full of the normal stresses and adventures of motherhood and family life but, it comes with a twist for Brittany. Her youngest, Brooke, has a devastating disease called Aicardi Syndrome. Brooke is her “forever baby”, as she likes to call her; she is extremely developmentally delayed and always will be. Much of Brittany’s days are filled with doctors appointments, taking Brooke to therapy, researching new treatments and medications, and fighting with insurance companies. Mix all that in with volunteering at school for Juliette and Audrey, running them to choir or soccer practice and managing to maintain a household and squeeze in a stress relieving run somewhere, often in the wee hours of the morning. She also serves in her church and loves to plan parties and organize her house. It is an adventure but she finds herself blessed, even with the hardships of having a special needs child. Her motto is “Life does not have to be perfect to be wonderful.”