So many people come up to me and tell me that I am strong, that they don’t know how I stay so positive through all that I’ve been through. I think it is so nice that people see me like that, like I am a super human of some kind. Super mom. Some days I do feel invincible. The truth is, I don’t have any super powers. I wish I did or none of this would be happening. I am just a good mother. I have a sick child who I would do anything for, no matter what, and I’m sure any good parent would do the same if they were in my shoes.
I think the hard part of trying to be positive is knowing that you can’t be all the time. I have moments that I have to convince myself that things are going to be ok, and moments that I know one day things will be far from it. Trying to be positive and realistic at the same time with what I am going through is difficult. Just knowing one day I will wake up and no longer be able to see, hold or kiss my child is something that I am scared to face. My heart sinks every time the thought crosses my mind. I try to shake it away so I can enjoy him while he is with us.
There is no way to prepare for this kind of thing, it doesn’t make anything easier knowing, it just gives us time to plan a bucket list. Hospice comes by twice a week to check on our little boy, as well as a social worker and a grief councilor. Our social worker came by last week and mentioned that we should start discussing funeral arrangements. I talked about it a little with her and tried to act like it wasn’t tearing my heart to tiny little pieces, but I know that it may be a good idea to arrange what we can now so we won’t have to worry about it when the time comes.
I look at Oliver looking up at me as we discuss this, and it kills me. Looking at him, you would never know he is terminally ill. Behind the cute little face is a baby who has known only a life of struggle and pain, yet he smiles. He smiles even when he was told he couldn’t. He will not leave this earth without showing how much fight he has in him, and I am so proud of how far he has made it. SEVEN months today. 7! Having Half of a heart, Feeding issues, Aortic regurgitation, Leaking Tricuspid Valve, blood clots, cardiac arrest, severe hydrocephalus, seizures, epilepsy, cerebral palsy… My little miracle.
Oliver goes through all that and his face says
“Screw you natural selection, I’m still here”