Death of Dreams

Letting dreams die is hard. And, dare I say it, it takes courage. Courage to admit that letting it go isn't failure. That conceding that this life that you're living doesn't look the way you always imagined it would doesn't mean that it's less. It doesn't mean that you're doing something wrong.

We're living in a social media era. One in which everyone wants to see #blessed on every post, every time. So we try. I try. Until we can't anymore.

The truth is. I pictured a very different life for myself. For my family. I loved, and still do love, hiking, cycling, long walks--just about anything active, really. Given my degree, music lessons were going to be given, starting about the age of five. Not only is music something I'm passionate about, but there's a fair amount of research showing how wonderful it is for brain development. Oh, and good food--I love that, too. Cooking it and eating it. 

Then I had children with motor delays. The first three have taken awhile (they walked between 16 and 21 months), but I figured they would get it eventually. We worked hard at it. Then we had Pip. Pip who has defied early expectations, and yet still struggles.

Right after starting to walk.

I'm a member of Facebook groups for nature exploration with young children, but the truth of the matter is, I can't go on a hike with Pip. Not during the winter in particular. Though I recently acquired something called "The Freeloader" that will hopefully make this possible during warmer weather, I haven't been brave enough to bundle up my full sized 4 year old, strap him on my back, and then venture out. I'd rather try this new thing when we at least have a normal amount of clothing on. Then we'll have to see how long a hike I can work up to--and how far my other kids, who still have some delays and stamina issues, can work up to. This isn't what I pictured.

We used to walk 3-5 miles a day. We can finally push our older three about a mile on their bikes and scooters. But Pip? Well, that's why we need his adaptive stroller. Walks are dead in the water. Thankfully, in the meantime, we've been given one to borrow, but that isn't a long term solution.

And food. Pip is making terrific progress with feeding therapy. We're really so pleased. But what does that actually look like? It means that I'm cutting his rice macaroni into three pieces. Then encouraging him to chew them with his back teeth (and celebrating when he does!). The same is true with pretty much all of the foods he can eat--which isn't many. I think we're up to 11. Or maybe 13. At 4 years old. We're not only cutting his food into pieces the size most people are cutting food into for their 8 month olds, but we're also having to remember to feed him on the kind of a schedule people do with their infants. In fact, because he's 4, and life is busy, we often have to set the kitchen timer so that we don't forget a feeding--particularly the 3pm one. He still doesn't have enough for a nutritionally balanced diet. Nor does enough go down to sustain him. He's still 99% feeding tube dependent.

I'm often reminded by well meaning others that these are things that they're doing for their toddlers or infants, but the key difference is that I no longer have an infant or toddler. This is a game I've been in for years--and my youngest is 4. It's also something we don't have a visible end to. The same goes for our "adventure" status. We're not just waiting for the baby to get a little older. This is our life. Indefinitely. We're having to reinvent our dreams.

We have two children on the autism spectrum and one with probable mitochondrial cytopathy. Actually, they're all likely to have mito, it's just that Pip got the shortest end of that stick. But explaining that to people is difficult. I can watch foreheads try to puzzle it out, and I stop trying.

And it's hard.

I don't like park days. I don't get to visit with the moms. I'm the "helicopter parent," making sure my child isn't tumbling off the equipment, and helping him up the steps and the ladder. I don't like fielding questions about why he has AFOs when he looks so perfect. In fact, I asked about going to a lesser brace this last week, and was told he isn't ready yet. It isn't the questions so much as the feeling that people just really don't get it. I leave feeling like the impression is that I'm just making it all up, when the reality is, I'm the mom who didn't get him fitted for new braces, and pulled him out of physical therapy last summer. I was that desperate for everything to be normal. So I pretended it was, until he started falling so often I couldn't anymore.

Those music lessons that were always going to be non-negotiable? Well, the plan is now for Mercy to get to start next year, at twice the age I originally planned. Hopefully. I'm having to learn that plans are always changing, though.

This is a serious work of sanctification. In so many ways. No only because I'm watching my life turn out in so many shades of different colors than I imagined, but because I'm having to learn to set aside my tendency to want to please others, and be what everyone else thinks I should be. That is probably the hardest part.
If I'm being entirely honest, I have a hard time seeing these colors as beautiful right now. I watched my son try to get onto a chair at church yesterday, arms quivering, and then fall off. That wasn't beautiful. It made my heart hurt. I don't see a reason behind that. I don't see beauty. I want a cure. I want strength. 

We managed our first family camping trip this summer. There was no hiking involved. The kids loved it. Note Pip's lack of AFOs. We were living the "everything is perfectly normal" dream. And it was fun!

I want them to jump and climb and race with other children, and keep up. I want to relate to other parents. To have friends and belong. As it is, I don't fit with the parents of disabled children, because mine are so high functioning, but I also don't connect well with parents of typical children. And it's a lonely and confusing place.

But as winter melts into spring, maybe we'll take that Freeloader out for a hike, and the borrowed stroller out for more walks. Hopefully we'll start some music lessons, and my children will be introduced to the arts in more thorough ways. We'll find our new dreams, our new adventures, and maybe we'll even find some families we can connect with along the way.

These dreams that have died will hopefully bring the birth of new ones, like seeds that have been planted in the ground, then burst forth as seedlings from the soil in the spring, full of hope and life. Growing stronger each day.