Before we decided to have another child, we always questioned on whether or not we should expand our family. At the time Hayden was constantly in and out of the hospital, her epilepsy was out of control, sometimes exceeding 80 seizures in a given day. The level of care and attention she required was extreme. Not to mention we tried for so long to conceive Hayden, and ended up having to go through IVF treatments to have her. The thought of pursuing that road again seemed utterly exhausting. It was heartbreaking as well, because before ever having children Shaun and I would fantasize about our future together and the family we always wanted to have. For us we wanted a large family with lots of children that would all come over for family dinners on Sundays in our elder years. That’s the thing though, you never consider the notion that you might have a child with a disability.
When we found out about Haydens condition and what we could expect for her future it was devastating to listen to the doctors grim description. When you are handed news like that you enter into a grieving process. You start at denial and work your way through the stages. One of those for me was grieving the family that we always hoped we would have. The family where the notion of disability and grief was unheard of. The desire to have more children has never faded but as time went on my thoughts and hopes of wanting more children started to feel selfish and I started to feel guilty. I felt that if I chose to have more children then it would deprive Hayden of the attention she needed and deserved from me. I felt that if I chose to have more children that in some crazy way that Hayden would resent me for wanting to try and have a another child and that she would feel like she wasn’t enough.
I beat myself up mentally for a long time before we took the leap and started trying for number two. At the end of the day, our reasoning for wanting another child wasn’t to fulfill some long lost desire of wanting a typical child. Our reasoning was because we learned first hand with raising any child, especially one with disabilities, that it takes a village. We knew that there will be the very possible likelihood that one day, God willing, that we will outlive Hayden. The thought of who will be in her corner if and when that time came was unsettling. We wanted to make sure that Hayden will never have to worry about being alone, especially considering she is non verbal and cannot advocate for herself. Now I’m not saying that this is the right decision for every family, as every family is different. But for us, I’m so glad we decided to have our second daughter.
I’m not going to lie, all of the fears I had before Norah came along all resurfaced during my pregnancy. I worried constantly about managing a newborn and Hayden, especially considering right before I gave birth Haydens seizures flared up again. Those first few months after delivery were so very hard, but I was very thankful to have a lot of help in the beginning. I look back over the past year and a half and I see just what a profoundly positive affect having a sibling has had on Hayden. Watching the two of them interact and giggle together is an extraordinary thing to watch. It is hard sometimes watching Norah surpass Hayden in a lot of milestones, but at the same time I see Hayden learning to follow and copy her sister which is helping further her development.
There are times where I do have mom guilt about my time commitments with each child. I felt guilty in the beginning when I had to pay more attention to Norah and feeding. Every time we have to go to a doctors appointment I feel guilty that Norah is missing out on a typical childhood. But then something always manages to happen that helps to reaffirm me that its all going to be OK.
The other morning I was getting the girls up as usual and changing and dressing them. With Hayden every morning she needs to be given medication for her seizures and we just administer it all through her g-tube. I never really thought about it too much, its just one of those daily routines that happens that I don’t usually think twice about. I never really thought about just how closely Norah was watching as she’s only 18 months old. I had Hayden laid out in front of me as I just finished changing her. Out of the blue, Norah who was standing beside the bed crawls up and grabs the empty syringe and proceeds to yank up Haydens shirt and puts it into her belly button. It may not seem like a huge deal to most, but in that moment I smiled and knew in my heart that we made the right decision and that Hayden will always have Norah and that Norah will always have Hayden.