“There’s only one address anyone lives at and it’s always a duplex: Joy and pain always co-habit every season of life.” ~ Ann Voskamp

Even in the midst of my large, crazy family I manage to read quite a bit. It used to be whole books in large chunks of time. Now it’s snippets wherever and whenever I can grab them. Sometimes it’s those snippets that I remember that sustain me in times when reading just isn’t going to happen.

As we have walked this painful journey over the past few years, the above quote has been one of those snippets that resonates in my mind on a regular basis. It’s crazy to me how the pain can be so deep and yet the joy can be profound all at the same time.

As we’ve walked this road of raising special needs children, I’ve noticed another “pair” that parallels right alongside this one. I don’t have a fancy quote to go along with it, but suffice it to say that just like joy and pain live in a duplex, hope and reality live in a special needs duplex.

Every day, we as parents walk this perilous line of balancing hope and reality. Whether it’s a child with physical, mental or medical disability we must constantly have the realities of our child’s situation in our minds-eye, but we are also ever hopeful of what the future holds for them. We have hopes and dreams for them just like we do for our “normal” children. It’s just that we have to adjust those dreams a bit with what is realistic. As much as Little E has come a million miles, she also has a million more miles to go. I am hopeful that she will one day work herself off of the autism spectrum. In the meantime, I will work my rear off to advocate for her so she gets every type of intervention service available. However, I am also every mindful that she may grow up to be an adult with autism. And she may never leave our home…and I’m okay with that.

In the same way, I look at how far DOP has come and am grateful that at first glace, she can blend in with everyone else…for a little while. Until they spend more time with her and discover the “swiss cheese” of the way her brain works. Most of the research I do for her on FASD, tells me that her “invisible disability” will always be that way and there is not much I can do. But you know what? Despite that reality, I will still fight just as hard to understand the way her brain works and to get every type of intervention service that I can find for her because I have hope. I have seen her learn-albeit slowly, but it is progress–and I believe that if I continue to choose hope in the midst of her reality day after day, her future can turn out differently than if I just give up. Will she ever be a rocket scientist?  Probably not. Will she finish high school and get into college? I don’t know. Maybe not, but I can choose to hope that she will instead of settling for less that what her fullest potential is.

Time and again, as I advocate for my girls, I hear people say that I work so hard for them, like they are surprised because this is not normal. This shocks me. Why would I not work hard at advocating for my children? Should I give up? Is it culturally expected that I would settle for less than their best just so I can be comfortable and pursue my own desires? They are my daughters who deserve every opportunity life can offer them no matter where they came from or what life has dealt them.

Although I am very clear on the reality of their disabilities, I will choose hope every single day.