The Life I Never Expected....

When I was pregnant with Ethan there were several other women in our church who were also expecting and/or already parenting young children so it was decided to bring MOPS to our church. After Ethan's birth and diagnosis I only attended a few meetings before I simply couldn't put myself through it anymore. My experience as a new mom of a medically complex, severely disabled child due to a rare genetic disease and the overwhelming grief that accompanies this "journey" made it too difficult to be surrounded by so much "normal."

As time passed I connected with a couple of other moms in my area who had children with special needs. This small group of women became a lifeline and their children became some of Ethan's first "friends." A few of us even participating in a panel discussion for the MOPS group, that I had previously dropped out of, where we shared our stories and answered questions.

Over the last six years I have removed myself from most "normal" parent activities. It is an act of survival. Things like helping out with Vacation Bible School, attending storytime at the library, even trips to the zoo and park, aren't nearly as fun when your child can't participate and/or enjoy it and you know he'd much rather just be at home with his lights and sounds toys. The "normal" stuff is extra hard on my emotions sometimes, it is impossible to not think of all the things that PBD has and continues to steal from Ethan and us as a family. The longing for Ethan to be healed has never gone away. We love him, but we hate PBD.

Fast forward to this summer. We are currently fostering two beautiful little girls. Although each have their own unique set of challenges due to what they have experienced in their young lives they are much more typically developing than Ethan and so we are for the first time doing a lot of the "normal" parenting stuff. I even had the insane idea that in the Fall I should try out the moms group at our church.

I don't know what I was thinking. It was a disaster. I didn't make it through the opening getting to know you activity before I exited stage left in a mess of ugly tears. I was embarrassed, upset, and hurt. A couple of ladies that I didn't know tried to comfort me, but I wasn't ready. I'm not sure I'll ever be ready for being around so much "normal."

A week or two after the "incident" I came across the book, "The Life We Never Expected: Hopeful Reflections on the Challenges of Parenting Children with Special Needs" by Andrew & Rachel Wilson in our church library. I wasn't looking for it, but when I saw it on display it just sort of popped out at me. I'm not completely finished yet, but I have to say that I really like this book and I wish that all the "normal" parents out there would read this book (or something similar) to get a glimpse into the world of parenting a child who is disabled.

The chapter, The Unresolved Why?, is particularly powerful. After providing three different insights that have helped him (Andrew) cope with the unanswered questions he concludes:

"I don't know why God permits so many bad things to happen, but then I wouldn't expect to -- I live in the confident hope that he will one day renew the world, so that even the darkest and most terrible evils of this world will be undone and swallowed up in victory. And I can look at the face of Jesus and remember that, whatever the reason for suffering, it certainly isn't because he doesn't care. Questions still linger, and tears still fall. They probably always will. In the meantime, though, I trust, and hope and wait." (pg. 81).

Additionally, the authors of the book happen to be from England, which adds a bit of a different perspective to the book than those written and likely read by the majority of Evangelical American Christians, because their country is so different than ours when it comes to services for individuals with disabilities and their families as well as public education and healthcare in general.

"We are hugely grateful to live in a nation with a welfare state, one that has poured literally tens of thousands of pounds into the health care, education, and therapy into our children already, and will pour in many times that over the coming years......We count it an enormous blessing to live in a society with welfare and benefits and special schools and blue badges (parking passes for those with mobility challenges) -- especially since we have friends with autistic children in nations that don't have any of these things -- and we think it's just good sense to get whatever help in available. I apply for whatever I might think might help my children thrive, and that means I've filled out more forms than a Soviet bureaucrat. But as soon as I start thinking of those things as rights, which I deserve (rather than, say, thinking of them as gifts, since I could easily have been born in Turkmenistan), I open the door in my soul to bitterness, irritation, and frustration. And that kills thankfulness. And when thankfulness dies, so do I." (pgs. 68, 84)

I have a lot of the bitterness, irritation, and frustration. Afterall, I do live in the state of Illinois. When you live in a state that is as bad as mine when it comes to almost everything and is number 1 in all the wrong things (such as having the most governors sent to prison, having the most unfair public school funding system in the nation,  having the highest property taxes in the country) it can be pretty hard not to be bitter, irritated and frustrated most of the time. According to "The Case for Inclusion 2016," an annual report which ranks how well State Medicaid programs serve Americans with intellectual and developmental disabilities (ID/DD), Illinois ranks 47th out of 51.

Living in Illinois aside, the majority of my bitterness, irritation, and frustration is because of PBD and the impact that it has on our son, our family, and so many others. Andrew Wilson states that, "Finding out your children have special needs is kind of like being given an orange" when everyone else is given chocolate (pg. 33). Andrew spends three pages on this analogy to ends with this:

"So there are times when we're wiping the citric acid out of our eyes and watching our friends enjoying their chocolate, when it feels spectacularly unfair, when we wish we could retreat to a place where everyone had oranges, so we wouldn't have to fight so hard against the temptation to comparison shop and wallow in self-pity. We know that oranges are juicy in their own way. We know that they're good for us and that we'll experience many things that others will miss. But we wish we had chocolate all the same. In our case, that feeling has become less acute and less frequent over time. Our appreciation for the wonders of tangy citrus and vitamin C has increased, and our desire for milk fat and cocoa butter has diminished. But in our story, so far, it hasn't disappeared. I'm not sure that it ever will. And that's okay." (pg. 36)

I admit, I have a lot of moments (or days), even six years into this, like that Friday morning last month when I had to leave the moms' group because I  couldn't seem to be able to wipe my eyes of the citric acid. But, there are other moments (and days) that aren't so bad, where the ever present citrus scent isn't completely overpowering. When I look at my husband being swarmed by Ethan and the girls, everyone with smiles on their faces and laughter filling the air, the amount of love present, so intertwined with grief of many kinds, is somewhat overwhelming. This is definitely not the life I expected, but this is my life and I know that I need keep trusting, hoping, and waiting.


Popular posts from this blog

Faces of Peroxisomal Biogenesis Disorders

#PauseForPBD -- October 5, 2017

2017 GFPD Conference Recap