My son is so beautiful that it breaks my heart. It breaks my heart that he’s not walking. It breaks my heart that he isn’t talking. It breaks my heart that he can’t eat. It breaks my heart that he feels broken and there is nothing I can do to fix him.
Most days it isn’t very hard. I don’t have to see him compared to other children his age. But it really gets to me when I see other 1 and half year olds sitting up in their parents shopping cart or walking to the car holding their parents hand. George is a wonderful, adorable little guy with a great personality. But if he didn’t have such a bad chiari malformation he would be saying mommy right now and eating cheerios.
Usually I am able to have a really good outlook, and I would never go moping around, wallowing in the grief of the loss of a normal life for my son, but the past few weeks have been hard. Between the cold and teething, George has had such an awful time. Other children don’t need oxygen to help them breath, they don’t choke every day on the extra saliva from teething, and they don’t need mucus suctioned out of their throat when they have a cold. So I have been feeling extra down.
So if you are another mom out there and you feel so alone and guilty about what your child goes through, know you aren’t alone. We all grieve for our children even when they are right in front of us. We grieve for the dreams we had for them. We grieve for the moments they miss out on due to their disability. It kills me that George won’t enjoy lunch with his friends at school, play little kid soccer, or sing his favorite songs. I know we are still blessed and so many have it worse but some days I just have to be selfish and cry. As long as I don’t burst out in tears at every doctor’s visit or every time I see a child in the store, I think I am doing okay.
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