I Can't Give My Children a 'Normal' Childhood. Here's What I Can Give Them.
If motherhood could be graded and tallied, I’m scoring 25 percent and losing three to one. I missed their first three days of school. I’m pretty sure I’m going to miss my son’s 6th birthday, too. A friend took my fourth-grader, second-grader and kindergartener to school because I was with my 3-year-old at the hospital. My heart sank when I looked at the calendar and realized I couldn’t be both places at once. We’d waited five months for the neuropsychology appointment, and it just happened to fall on the first three days of the other kids’ school. I hate having to choose like that. Who needs me most? Where do I absolutely have to be? Who can get by without me so I can take care of her… again?
It seemed so perfect, having four kids. We’d always dreamed of our family looking like this. We envisioned family portraits and vacations and camping trips, and it all seemed so perfect. After two miscarriages, our perfect family was born. A girl, two boys and then another girl. The day she was born, everyone hoped baby number four would be a girl so my oldest would have a sister. What a joyous moment to announce that indeed there was a perfectly balanced family!
There were sisters and brothers, and everything was right. For three years, everything was perfect. Then, it wasn’t. We discovered she had a structural brain abnormality that causes delays and seizures, and nearly a year later, we discovered she had genetic mutations. We do not yet know the consequences of her flawed genetic makeup — she may have a shortened lifespan, she may have a degenerative disorder, and the other kids may be carriers. Our perfect family and their perfect families are threatened. They won’t have the sister we thought they had, and the cherry on top of the sundae is that their future children may be affected.
Each of the kids has handled her disability differently. My 10-year-old daughter has been inspired. She is the biggest help and loves to attend therapies and doctor appointments, recounting her sister’s successes for everyone she encounters. She mimics what the therapists do and has decided she too wants to be a therapist when she grows up. She started a club at school to help children with special needs and wants to fundraise for the school, the community, for us. The power behind this child is incredible. She has always been old and wise for her age, but now, she’s a grown-up in a child’s body. Tears fall when she thinks about how unfair it is that her sister has a disability, but she wants to put her grief to work. She does not yet know about the genetics, and I don’t look forward to the day when I have to explain it.
My 8-year-old son has the most tender heart of all. He’s wild and impulsive and really gives me heartburn some days, but that child has the deepest thoughts and emotions. He and his youngest sister have the sweetest relationship. I think she loves him most of all, and he is always gentle with her. He tells her she’s beautiful and picks her up and spins her around until they’re both laughing so hard they fall to the ground, laughing harder. Lying in bed with him one evening he said, “Mom, I’m sad that her brain isn’t normal, but I know she was made this way because God doesn’t make mistakes, so it’s OK that her brain is different because she is supposed to be like this.” I was thankful it was dark so he couldn’t see the tears that quickly escaped my eyes. He has this ability to speak so much truth for an 8-year-old boy.
His little brother, nearly 6, is just young enough not to be overtly affected by her condition. He doesn’t have a lot of emotion about it, but he does wish I could be with him more. He fights with her just like any sibling would and doesn’t have quite as much grace for her as the other kids do. He struggles most with the words I have to say so often: “I can’t do ___ with you today because I have to do ____ with her.” Recently he suggested I drop her off “somewhere” so we can go to a movie and cuddle. I’m not sure what “somewhere” means, but I know he is hurting for me to have more time with him. Next week he will be 6, but I will be in the hospital with her doing another EEG study. He doesn’t know that yet, and I don’t know how to tell him. I want to cook him a big birthday breakfast, surprise him with a Happy Meal lunch at school and make him whatever he wants for dinner, but I’m not going to be home.
I feel like as a mom, I’m giving 100 percent to only one of my kids. I’m failing three so I can give one the best chance of success. I pray God put resilience in their genetic makeup to compensate for her genetic flaws and my flaws as a mother. I don’t know how many times they can hear me say, “I’m sorry” before they stop believing me.
I’m sorry I can’t go to your football game, she has hippotherapy at the same time.
I’m sorry I can’t go to your class party, she has an important doctor’s appointment.
I’m sorry I can’t go on your field trip, she has speech and occupational therapy that day.
I’m sorry I can’t go to the park today. I’m so, so, so tired.
I’m sorry. I can’t.
I’m sorry we have to move so she can have a better school.
I’m sorry you have to sleep in my office because she won’t sleep at night.
Right now, they have compassion for her. Right now they are understanding, but how long will it last? I see cracks in the façade of our perfect family, and I’m still grieving the loss of the little girl I thought I had. I’m not anxious to have the others slip through my grasp as well. It’s a juggling act of the worst kind. There is so much on the line, and I am incapable of keeping them all in the air. Who do I choose to let fall?
The wonderful thing about these siblings is their love for their sister. Maybe that’s enough to pull them beyond the disappointments, maybe their love is enough to bond them to each other, lean on each other, lift each other up and, some days, carry me, too. I see in each of them a strength, a gift of love and compassion and mercy and kindness. It breaks my heart that they have to endure losing the perfect sister, the perfect family vacation, the perfect first day of school and the perfect birthday. I can’t always give them those things.
I can and will give them my unending love and affection. I will give them each other. I will give them every last bit of myself I can muster and pray that it’s enough.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.