It is amazing what your children can teach you. Natalie is the only one in Cara’s life that sees only Cara. She doesn’t look at her with a sad heart and tearful eyes. She doesn’t think about the future when she looks at Cara’s face. She doesn’t see the things she can’t do. Natalie looks at Cara and just sees her sister.
Today Natalie, Cara and myself were sitting on the couch watching television. Cara was sitting between Natalie and I leaning against me. I looked down and noticed that Natalie was holding Cara’s hand. Then she roughly nuzzled her sister’s cheek with her own and kissed her. I smiled.
Natalie cuddles Cara a little too rough, smashes her face into Cara’s when she kisses her, gets her hair in her face when she hugs her, holds Cara’s little hand tight and doesn’t let go, tries to force Cara to play with toys and makes a lot of noise when Cara wants to sleep. She is not careful and quiet. She treats Cara perfectly. In the moments where Natalie is interacting with her baby sister, Cara is just Cara. It is two normal sisters playing. In those moments Cara’s brain is totally healed, there is no possible disease, no developmental delay, no future of tests and results, no future disability, there is just Natalie and Cara, just sisters. It is so beautiful and there is no better therapy for Cara. It warms my heart so deeply. Only Natalie can have these moments with Cara and I feel blessed and privileged every time I witness it. In those moments I see a normal happy baby playing with her big sister. I can’t even describe what that feels like and only another parent with a special needs child could understand. A very close family friend shared with me how a psychologist described what parents with special needs children go through. It is grieving. You grieve your normal child. The big difference is that when you grieve the lost of a loved one you come to peace with the fact that they are gone and you move on. There is no “moving on” with a disabled or chronically ill child. Something can happen that triggers the grieving process to start again from the beginning. There is something they can’t do, you see other parents with normal babies, someone says the wrong thing etc…and you find yourself back at the beginning feeling denial, sadness and anger. The best way to describe how it feels for me to see moments of Cara as a normal baby is for someone to get a few minutes with a loved one after they have passed away. When the minutes are gone the ache sweeps back in and the pain is greater but those minutes make any amount of pain worth it. Don’t get me wrong, I love my daughter exactly the way she is and it is because I love her that the pain, anger and longing for her to live something as simple as a normal life is so great. Natalie only has moments with her normal baby sister, she doesn’t see her as anything else. I wish it could stay that way.
Here is a quick update:
We are still waiting to get an appointment with the neurometabolic team at OHSU. In the back of our minds is the possibility of taking Cara to Seattle Children’s Hospital. I no longer feel the need for patience. Patience is only a virtue when it does not involve the lives of your children. Hopefully we will hear something in the next couple days.