As My Daughter With Special Needs Celebrates Her Sweet 16, I'm Taking A Moment To Grieve

by Abby Kopf
Originally Published: 
Abby Kopf hugging her special needs daughter in the kitchen.
Abby Kopf

Today is a Wednesday. There is nothing special about today except that it is the eve of my oldest daughter’s birthday, her sweet sixteen. Tomorrow will be a day of celebration with family and friends. A day when we will reflect on her milestones and achievements no matter how big or small, and become nostalgic over how fast the time really flies. Like most sweet sixteens, we will have cake and ice cream and sing happy birthday. She will be bashful and a little embarrassed about it, but her beautiful smile will fill her face and we will know that she is secretly loving the attention.

Unlike most sixteen-year olds, she will not be receiving her driver’s license. It won’t be a day where she stands in front of her closet painstakingly trying to decide what outfit makes her look older, while shifting past the already worn formal dresses from high school dances. She will not stand in front of the mirror trying to perfect her hair and make-up before she rushes out of the house to meet up with her friends. We won’t have to schedule the party around any high school sporting events or her part time job.

For those reasons among many others, on the eve of her birthday, I am going to allow myself a rare moment of grief.

Maybe these feelings are a little selfish, a little shallow. After all, I have a beautiful girl who loves without fail and has a soul that is as pure as the day she was born. Sometimes, though, I feel cheated. I just need a moment to grieve for the daughter I had expected so I can go back to cherishing the one I was given.

When I see the homecoming pictures and prom pictures on Facebook, hear you complain about the high phone bills, the expensive taste in clothes, the cost of your teenager’s car insurance, there is this part of me that gets jealous. It probably sounds bananas that I would even think of wanting those things, but I am jealous that I will never have that — she will never have that. I want so badly to know what her blue eyes would look like with make-up on and how she would choose to dress if she had the ability to do so for herself. I want to know what kind of car she would want, what kind of boy she would date, what sports she would play.

Today I can acknowledge that I hate that I am still changing my teenage daughter’s diapers. I hate that I know what anti-epileptic meds she is allergic to, what vein works best for blood draws, and how to get her to swallow medicine even when she doesn’t want to.

Those are not the things I dreamed about when I was pregnant, and they are not things that I wish for any mother to have to know. So today I am going to cry a little, vent a little, maybe have an extra glass of wine for my pity party … because tomorrow my baby girl is sixteen.

Tomorrow I will wake up and remember to see the gift God has given me. My sweet sixteen-year-old who gives me lots of kisses and hugs and still requests that I tuck her in at night. The girl who still cuddles her 135 pounds on my lap so I can rub her back, like she did as a toddler. I can acknowledge how much special needs motherhood has changed me for the better.

I am more tolerant, patient, and compassionate. I have learned that I can dig deep and find more strength in myself even when I think there is nothing left. I have also learned that sometimes it’s okay to acknowledge that your life isn’t perfect. That you don’t always have to act or feel #blessed by the cards you were dealt. To give yourself a moment to grieve the loss of the child you expected, in order to allow yourself to truly celebrate and accept the one you were given.

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