My Rants

People always say “God doesn’t give you more than you can handle”. Well, sure…. I can handle it. Doesn’t mean I want to. I’m sorry but I just don’t find comfort in that saying. I don’t find comfort in many of the trite but well meaning things people often say to me. Yes, I’m a strong person. But at what cost? I’m exhausted. I’m depressed. I’m emotionally fragile. I feel like I’m living my life at a fraction of its full potential.

I worry about the past: what could I have done differently? Maybe it would have been enough to just have one healthy child. Maybe I hadn’t gotten pregnant the first month we tried. Maybe genetics would have worked out better in our favor if we got pregnant a month later or a month earlier.

I worry about the present: is Tobin going to grow up with our attention so focused on his brother all the time? How much longer can we go on going through the routine of our lives when it is mostly time consuming exhausting work? How are we going to afford all the time off we have to take from our jobs? What therapies are out there that Oliver would benefit from that we can’t afford and that insurance won’t pay for because they are “alternate” therapies? When will we stop feeling guilty for wanting just one day to not be parents and to get a break from it all?

I worry mostly about the future: What will Oliver be like 5 years from now? 30 years from now? Who will take care of him when we’re gone? We don’t have the money to set aside for his future care and I feel awful thinking that he will be a burden on Tobin and that Tobin will resent him or us. How many years of diaper changes am I going to have to do? Where should we live to ensure the best medical care and special needs services? Most of all I worry that Oliver will still be suffering from seizures and developmentally 3 months old for the rest of his life. I know he won’t know any different, and that if we can keep him comfortable and happy 90% of the time that it will still be a “good life” without excessive suffering. But the suffering comes on our parts. We suffer to watch a child that could have been so different if it weren’t for dozens of things we can’t change. We suffer because we might not be able to go on vacations and do the traveling we thought we’d be able to do with two able bodied kids. Everything will be that much more complicated to schedule and arrange.

Some days I just want to give up trying to fight these stupid seizures. It seems that no matter what we do, the seizures remain and are on their own timetable. I am just so tired trying to stay one step ahead of our treatment plan and always have a next option ready to go? What happens when we run out of options? I am curious how many seizures Oliver would have without all of this medication and this diet. Would it be the same or would he have more? I also wonder just what his development would be. I was expecting him to be better overnight once we started the diet and I’m disappointed that he’s not. I wasn’t expecting complete seizure control but I was hoping to experience the developmental surge that everyone talks about. It’s so exhausting pushing through each day looking forward to a brighter future but not seeing the path to get there. I could push through the exhausting routine of our days and do this for another few years if I knew there was an end in sight. If one day he’d be able to sit in a high chair at a restaurant or be mobile enough to crawl around the house and play with toys. If the seizures would go away or he’d start developing and we could look back on this and talk about how much progress he’s made. But when I face reality….that this is pretty much our future…. I just want to crawl under the covers and stay there. It’s certainly not the worst possible life for the child. When he’s not having his daily crying fits (which could be gas, reflux, teething or just baby crankiness) he is generally pretty happy and content. He’s small and portable and easy to tote around most of the time. But as he gets older, bigger and more difficult to handle….what will our life be like?

I try, everyday, to embrace the person he is rather than mourn the person he’s not. But it’s hard for me. I sometimes imagine that there is an alternate universe out there where my boys are running around together, fighting over toys and driving me crazy because they are both so active. I feel like all of this is happening simultaneously while I’m preparing meals, putting meds into syringes, and scheduling doctor’s appointments. I wake up every morning hoping I’ve transferred over into the world with two healthy boys and I feel a surge of sadness when I realize that I haven’t….and then I scoop up that adorable sleeping baby and cuddle him awake for his meds and I instantly feel more centered and peaceful. He is the grounding force in my life as well as the cause of all my worries. How strange that if this one person were gone from my world my life would be so much more calm yet at the same time I can’t imagine life without him? Some days, when Oliver is feeling good and the seizures aren’t coming we do enjoy a bit of peace. There are some advantages to a 12 month old who is more like a 2 month old: He stays where you put him. He eats whatever you feed him. He doesn't argue with you. He takes lots of long naps throughout the day, anywhere you go (stroller, car, living room couch). He doesn’t fight with his brother. We don’t have to baby proof the house.

I would gladly trade it all for a tantrum-ing toddler who tries to turn the oven knobs and throws bowl of pasta out of the high chair. If this experience is teaching me anything, it’s to be SO grateful for behaviors most parents complain about. On those really rough days with Tobin I just keep reminding myself how lucky I am that he has opinions and voices them, and is growing up to be smart enough to try and wheel and deal for 10 more minutes of tv or an extra ice cream sandwich. He is such a funny, smart and sweet little kid. He surprises us every day with all he’s learning to do and say and we try to celebrate those moments rather than feeling sad that Oliver will never have them. I hope that in time, this gets easier for us. And I hope that in time, Oliver proves us all wrong and shows us that underneath all of the medical issues….there is a happy little boy who will wake up every morning and greet me with a grin.