Biblically speaking, I think we could say that this would fall under the realm of "mourn with those who mourn" (Romans 12:15). It is relatively easy to rejoice with others, but most of us likely need to work on mourning with others. Coming into another's pain is a difficult thing to do.
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| Pip's first day with a feeding tube at 9 months old. |
The past couple of years, this time of year, I'm again struck with an overwhelming feeling of isolation. This year a couple of other things have compounded that. However, overall, we come to about November, and cold and flu season hits. We can have been sailing merrily along through late spring , summer, and early fall making terrific progress with feeding, occupational, and physical therapy, only to have everything come to an utter stop in November.
Starting in November we struggle to simply maintain at our house. Every virus that comes in is a potential battle to keep Pip out of the hospital. It often means weeks without going to church. We see all of that work, particularly with feeding, regress. I start to wonder if I'm being overly optimistic about his future when I envision him without a feeding tube, and if I should resign myself to the reality of him having it forever, which we're told is the most likely possibility.
And, this time of year, more than any other, we get more "words of wisdom." Because I don't know what it's like from any other vantage point, I don't know those realities. However, I can't help but wonder if things would be any different if we had a diagnosis that was better understood. That wasn't still so heavily in the research phase--if we weren't waiting for a cure, or even a treatment with solid promise of slowing the progress of mito. If people could knowingly say "ah, an extra chromosome. Not your fault." Or "there's nothing you could have done to prevent that cord around the neck." However, in our world, the one I know, outcomes are unsure and the condition is poorly understand by most. We hear "you can't trust the doctors" when we've been told the condition might be degenerative. This is meant to be hopeful, but when you're trying to wrap your mind around this possibility, it feels dismissive. Or "this must be the result of a vaccine injury," especially since we also have two children on the autism spectrum. What do we hear? "Too bad you weren't as smart as we were."
I've actually heard people tell those with autistic children "we were planning on vaccinating, but then we educated ourselves." I'd like to make one thing very, very clear here. There are more than likely many causes of autism, but regardless of that fact, not one of our children is a "bad result." That may not be how it's intended, but that's certainly the way it sounds. Also, don't assume others haven't done their research or prayed about their decisions, either. It is possible for educated, thinking, Bible believing, Jesus following adults to come to different conclusions, and we must, must be able to walk with one another in love and not assume that another's suffering isn't our own because we knew better.
We've had the pink drink, essential oils, fermented vegetables, and any number of diets suggested.
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| Pip taking his first steps with the help of AFOs and a walker. Such a happy day, and oh, how far he's come! |
When you have children with medical complications--particularly ones that are potentially degenerative, believe me, parents are capable of stunning amounts of research. If we haven't actually tried it, we've read extensively enough to know why we haven't. In many of our cases, prayer has been coupled with that reading.
Mitochondrial disease, like many other conditions, is complex. There are no easy answers. And it really boils down to this--only God knows why. So what do we, and so many others walking similar journeys need? We need a friend. Someone who can understand why we're not scheduling a million play dates--or even one or two, though we desperately want to. Someone we can call. Someone to "hold space" for us. Those days when Pip hasn't eaten anything orally...again? Someone I can talk to who won't say "don't be discouraged." Because really? It's discouraging. It is. I know that there's always tomorrow, or next week. But he's almost three, and I want to leave the house with a regular snack and not a medical arsenal, and plan a play date, and be seen. Be known.
I think that's what most of us really want, ultimately. To simply be seen. Through the managing all of the stuff so well, because we have to, because you would to if your child's life depended on it.
I like to think, I truly believe, that if Jesus walked into my home, and any other with children like mine, that, apart from healing these precious ones, he would weep with us, as he did with Mary over Lazarus. He would know this is hard, and not ask us to pretend otherwise. He would see us, and know us. To be known and loved. That, in itself, is a balm to the soul, and a kind of healing that no other offered remedy can come close to touching.
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| This was over a year ago now, and no, we don't always look this put together. |
