I often question how it is that I’m handling things so well these days. I was a walking ball of anxiety for the first few months after Connor was born, and now I just feel so…normal — an adapted sort of normal — but normal nonetheless. At one point I even started questioning whether I was in denial, rather than just being adjusted. It probably helps that the second year of Connor’s life has been much smoother than the first. But I’ve seen a lot of online dialogue regarding birth and diagnosis stories. Some people have developed PTSD from the traumatic circumstances. Years later the thought of those circumstances still has a traumatizing effect on them. I don’t really think about it that much. Connor’s seizures started hours after birth, leading to a five-week stay in the NICU, so it was definitely traumatizing, but why is it that I’m able to just block all that out and not think about it, while others find themselves seeking therapy or suffering at the very thought. That’s actually what led to me wondering if I was in denial. I even Googled it (haha), but I think I’m too functional to qualify (of course, I found about eight other unrelated disorders I might have).
Chris recently spent some time going through some stuff in the office. When I went to bed that night, he had placed the buttons that Northside Hospital gives out to families when a baby is born on the table next to the bed.
And suddenly, I was crying. I used to be a big cryer, but I hardly ever cry anymore. So I was surprised by my reaction to the buttons. They made me sad that we didn’t get to have a normal start and it brought back the feelings of fear. I remembered asking for something to help me sleep –which they wouldn’t give me — and lying awake bitter that I could hear other people’s babies on the maternity ward crying in their parents’ rooms. I remembered how cruel I thought it was that I had to stay on the maternity ward at all. I remembered how I didn’t quite know what to do with the buttons at the time. I don’t even remember if I wore one. But I knew how excited I would have been about them had everything gone normally. I love cheesy stuff like that.
Acceptance or denial? I guess I’m somewhere in between.
Mixed Up Mommy 
becky , i didnt find find out stacia was not perfect until she was almost 9 mos old and slowly began acting different and then having infantile spasms … I often womdered if it wouldve been easier to find out at birth she had tsc or was it more cruel to love her as a perfectly healthy baby and then find out she wasnt . I remember feeling like that perfect baby had died even tho she hadnt and it took me about a year to accept It and stop greiving over the loss of a dream i guess and come to accceptance and love her for her as she was .. Imperfect. It takes some parents much longer and some years or never , but the sooner you do the easier it is to help your child as you are doing so very well. It helped me to have anothe child but then i believed for a time what the drs told me … That she would die if her seizures werent controlled. .. I thi k we parents of special needs kids or ill kids have to just accept this is thehand weve been dealt but use all our strength to find ways for our child to fit in this world with whatever disabilities they may have … We become warriors for them i think and some of us make a difference for others along the way as you are with this blog. connors a lucky boy . Be kind to yourself .. You will have several periods when you cry for what might have been And then you fortify yourself for the next part of their life and how you will learn tomdeal with it . Having lived it for a lifetime , i can tell you the grief doesnt ever go completely away but the unconditional love you will receive from connor and the gift of being able to see the world thru his eys and withnhumor eventually is sortof magical.. And altho id have given anything including my life to have taken tsc away and given Stacia a normal development and life .. Im not sure there is a normal anymore and im not sorry i got to raise her . It sounds corny i guess , but she made me a better person .That was her gift to me .
Thank you! Such a great message. I definitely think he’s made me a better person. And as much as it sucks that I didn’t get to enjoy the beginning I do think that was better (for me, anyway) than finding out later.