Dan's mom is in town and stayed with Averi last night so that Dan and I could go on a date. As we were driving home with Kaili in the backseat I leaned back and thought how nice it was to be out with the whole family. It took a minute or two before I realized that the three of us were not the whole family.
I felt like such a horrible mother. How could I forget my own child? I only have 2, it's not like I have too many to keep track of. It was really bothering me, so I spent the rest of the ride thinking it through.
I decided that I live a double life. I have one life where I sleep on an air mattress that has to be put away everyday and spend my days caring for my sweet baby girl. My days are filled with feeding, changing diapers, therapy, naps, occasional walks around the halls, IV's, feeding tubes, medicine, and medical personnel. This life sometimes allows me to take my baby home, where we stay until we return to the hospital. Averi never goes out, needs all of her toys cleaned, and is a good reason not to have people over.
My other weekend life is completely different. I spend it sleeping on a queen bed all alone while I wait for my four year old to come wake me. It consists of laundry, cleaning, playing pretend, paying bills, going to church, and getting caught up on 'real' life.
Neither one of these lives is normal or ideal. So the one time I'm actually allowed to go out into the world, my body refuses to acknowledge it as part of my life. In fact, I'm pretty sure that there are people who see our broken family coming to church and don't even know that we have an angel that is part of our lives. Does it matter? No. Does it hurt? Yes, because even I am starting to disassociate Averi with our family.
It makes me realize that I took so many things for granted. A simple trip to the grocery store with my girls. Getting to play with both girls, on the carpet, with no time restraints. Spending the night as a family, all 4 of us, and not worrying who will interrupt. Making dinner and entertaining the kids at the same time. It goes on and on.
I'm starting to ramble, but I guess my point is that I can't wait to have my life back, my life that consists of my husband and my two girls together on a regular basis. I hate feeling like Averi is only allowed to be in part of my life, and Kaili in the other, especially when my family IS my life.
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A journey through life with Down Syndrome
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5 comments:
Your life is intense and extreme. I continue to pray that you will all be reunited for good and that the cancer will leave little Averi's body forever.
I can't wait for your life to go back to "normal" again either and see all 4 of you on a regular basis! :) It's crazy the little things we take for granted in all aspects of our life.
You know who else lives a double life? A hero. Except in your case, you are a hero in both lives. :)
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Someday soon your life will go back to "normal" and this will be all be a distant memory. You won't remember what it was like to be apart. We are going to have a huge party when she gets to come home for good!!
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