I’ve been reading a lot of blogs over a lot of years. Blogs about being a single mom, going through divorce, being a parent of children with special needs, and now about Down syndrome. And I’ve noticed some things that a lot of blogs about life have in common. The tough stuff is discussed and you get a sense of what they are going through, but it’s not often I see posts about the real feelings that are going on at that moment. It’s more “Yes, this is tough and I am having a tough time, but I will get through it and all will be well.” I’m guilty of the same thing. We want the people coming to these blogs looking for support or advice to know that it will all be ok. But, as I read many of these Down syndrome blogs, part of me wonders if they felt what I am feeling right now? Did they have these internal struggles like I do? Do they have good days and bad days when thinking about what the future may hold? Do they have the same kind of thoughts that are running through my head? So here are my honest and real feelings.
There really are good days and bad days. On the good days, I know I can do this and that we will be ok. I read blogs and I look up Down syndrome on Pinterest for any ideas that I can save for later. I think about what plans need to get put into place over the next couple of years to make sure my daughter has the best chances possible. I research and reach out. I feel ready for this new normal.
Some days, I don’t even think about it. I make plans for things to do with Alex before Mary arrives and how we can continue to do those things after she arrives. I organize my binders to add a section for her (I love my binder organization!). I think about and jot down ideas for my wedding. There are days where Down syndrome doesn’t even make it to the front of the line of thought. It’s easy to feel guilty about it, but I also know that I still have a life to live. I have a son that needs his mom in the moment. I have a fiancé that needs to be more than just mom 100% of the time. I need to be me and not lose who I am in all of this.
On the bad days, I cry a lot (Bryan says this is an understatement……). I wonder why this happened to our daughter, to our family. What purpose is there for her to have this genetic abnormality that can lead to any number of health issues and developmental delays? I try to find a greater purpose in it, something more than just a genetic accident. I wonder why I am being given two children who will have special needs. Will I be able to handle it? Can I do the therapies she will need me to do with her? Will I still be able to give Alex the help and attention he needs as well as her? At first, Bryan would reassure me and tell me it would all be ok. Now, he just holds me and lets me cry while telling me that we will do this together.
I look forward to the day when I look back on these feelings and see them as naïve and silly for even worrying. I want that feeling of everything being ok, not of worry. I look forward to when this is no longer an unknown to me.