I’ve had a slew of emotional days this past week. It’s been a constant battle of “what ifs”, worrying about the future, and trying to appreciate today. Lately, I’ve just had this feeling that our lives have turned into a ticking time bomb and perhaps this is going to be as good as it gets. Let’s face it, Lissencephaly sucks. It’s not curable and it never really “gets better”. In fact, it might get better for a while but eventually it will get worse. At least, that’s what all the literature and personal stories I’ve heard from other families say. Maybe not in those words, but you know that’s what they are saying. I’ve been thinking a lot about the future and that is not a good place for my mind to wander…
When will seizures start? What equipment are we going to need to make our lives easier? When should we move into a new house? Will I have to miss out on Will’s activities in the future? Is he going to feel slighted? Will he be resentful? Will we ever get to go on vacations? Are we going to be able to make enough memories for him?
…and these questions are just the tip of the iceberg.
I haven’t talked a whole lot about, my two year old son, Will, a lot in this blog but I worry about how this will affect him constantly. Luckily, this is all he ever really knows! He probably doesn’t remember life before Paige and to him this is just his life… his childhood! I was talking to Andrew today on his lunch break and voicing some of my concerns (he hears new ones, daily). Today, I told him I was worried about making memories with Will. I don’t want him to look back when he’s older and remember us being stressed or crying. While we are going to be very honest with him about the realness of everything, I don’t want this to be his definition of our family. Actually, I don’t want this to define our family at all! Sure, he has a sister with disabilities, but he’ll know that she’s more than that. She’s an undeniable, ultimate being of joy and she loves her big brother more than anything. One day, he might see his sister have a seizure and other various health problems. I hope it helps mold him into being a more compassionate, mindful, and helpful person. Being different, to him, will just be normal. For being two-and-a-half years old, he’s already very intuitive of other’s feelings and especially his sister’s. When Paige cries, he runs and gets a pacifier. If that doesn’t work, he strokes her head and says, “It’s ok, Sissy” and gives her the biggest kiss. He’s tried to feed her bottles when he can tell she’s hungry and he washes her hair in the bath tub. I can already see the love he has. I know that one day, he’ll ask questions and I’m still trying to think about what I’m going to say to him. Andrew is much better with words and explanations so that’s a conversation we’ll have when it’s time. I make it a daily goal to show Will how I feel about him, make a memory or two, and give him extra hugs, kisses, and time. He is one loved little boy!
Another saving grace is knowing that we’re not alone. Along with our wonderful families and friends that have offered their love, support, and time, we got the privilege to meet four other families in the Pittsburgh area who have children of varying ages (7 months to 18 years!!) with Lissencephaly. This past Sunday, all of us met in a back room at a Panera Bread and talked, advised, exchanged stories, ate, laughed, and cried (ok, I was probably the only one who cried) and every family was different and inspiring. Most of all, they were all GOOD people with absolutely wonderful outlooks on life and family! I got a lot of useful information and pep talks from the two veteran moms (I will always have bad days, they won’t go away, but things WILL get better and brighter) and compared notes with the other two newbie moms. I already knew one of the other mom’s and we’ve gotten to be really good friends so it was awesome to see her again! There were also other men there which was good for Andrew to have people to talk to, as well. It was sooo nice to talk to people who understand what we are going through and didn’t look at us like we were a wounded animals. Yay, for new friends!
No emotion lasts forever and happier days are always ahead.