When I was 14 I joined the color guard in our high school marching band. Not the twirling flags or rifles color guard, no no, the people that hold the banner and the American and state flags. I point this out because I was pretty confident about my incapability of doing anything more than that. After a few months of time spent with upper class men in the color guard who felt the need to put me in my place as a freshmen [read bullying], I had enough. I went to the band director and asked if I could be placed on an instrument. He needed French horns so I was switched into concert band and was handed this complicated beast of an instrument. I signed up for private lessons. I practiced and practiced, and by the time I was a junior I was first chair and selected for All County (big deal for band folks). I gained control over a completely powerless situation, and thus a coping mechanism was born.
The same would happen again and again as I got older. I would take seemingly challenging scenarios and fight my way out of and over them. Hard work, perseverance and determination paid off, every time. That equation served me well in my education and career. And then when Mark was diagnosed with autism and SCN2A I dug my heels in, and set into motion pummeling away at it like usual.
Eight months into Mark’s diagnosis, I was helping to plan a color run to raise money for research. I did a restaurant fundraiser, a quarter auction, a paint night, and then another color run the following year, and again this year. I threw myself into fundraising, advocating and learning everything I possibly could about autism and SCN2A. I read books, studies, listened to podcasts and immersed myself in the special needs world. I started this blog. I wrote and shared, and poured myself into understanding insurance, therapies and biomedical treatment. Just like all the times before, I was going to educate, work and dig my way out of this rather troubling and unsettling situation. But this time it didn’t work.
Mark is not cured. He still has autism. And I’m in rough shape. My resting state has become that of dread and anxiety. I replay some of Mark’s scarier moments in my head repeatedly. I jump when my phone buzzes with a text or voicemail and I worry endlessly over the possibility of seizures. I fully realize that adding another baby to our family and the subsequent sleep deprivation has magnified these feelings but they are valid none the less, and my current reality.
I struggle to really engage at work. When I hear my colleagues chatting about their plans for a holiday or weekend, I can’t relate. I’m held prisoner in our home because being out in the the world is so much harder with a child like Mark. An unexpected errand or a stop at a foreign gas station will result in a head banging tantrum requiring me to hold onto Mark’s face and yell above the screaming “first gas, then home!”
I don’t watch any popular TV shows, go to the movies or have a clue about pop culture. I spend any spare minutes I have intensely focused on whatever obstacle is in front of us. This year after Mark entered pre-k I saw the issues within special education and I got to work advocating for improvement. (See the theme? Push, push, push.)
I’m a bad friend. I’ve forgotten birthdays, important things and anniversaries. I even forget to ask how other people are doing because I’m so inwardly focused. And I’ve fallen off the grid for weeks or months at a time, surfacing only to post on social media in an attempt to avoid complete isolation.
I have PTSD. And I don’t say this lightly. It’s true. We’ve been through a number of traumas and I’m stuck in the cycle of grief. I’m not in denial of our situation but I haven’t fully embraced its magnitude. I haven’t accepted that Mark will always be different; that our family will always look different. Our normal will not be the normal of my friends families. When people say things like “they’re only little for so long” or “enjoy these years, they’ll grow up before you know it”, anger bubbles up inside of me because Mark will be our eternal little boy and most likely won’t leave us. I fully believe that research is speeding to a cure, but will it be too late for Mark? Will he be too old for it to reverse his neurological trajectory? It pains me to type those words and I don’t want to believe them. I have always equated acceptance with defeat and loss of hope and I haven’t been able to go there. Acceptance meant that I lost the game I was trying so hard to win.
I found myself sitting on a couch across from a therapist a few weeks ago after I reached a point where I determined that I needed reinforcements. She explained that hope and acceptance were in two different buckets. I explained how I felt that they were in direct opposition to one another. And then I told her how I felt about God. After I finished sharing how I felt like God was trying to repeatedly teach me something that I wasn’t getting, that prayer felt useless because He had ordained all of these troubling things and how I felt devoid of blessings, she looked at me and said that if she felt the way I did about God, she would be an atheist. In that moment I realized how incredibly lost I was.
I’ve mentioned before that I’m not a crier. I realize now that it’s because I’ve numbed myself. And what I didn’t realize was that I not only numbed the fear and sadness I have about Mark’s diagnosis but I also numbed peace, joy and happiness and haven’t had access to those feelings for quite some time.
I see the constant vacant look on Mark’s face and if I let myself really focus on that, and wish for him to come back to me, a knot forms in my throat and as quickly as I let myself slip into that place of sadness, I shut it down.
Sometimes I pretend for a brief second that Mark is cured. I imagine him engaged, talking, excitedly pointing to something, with an intense desire to share it with us. I envision Jillian interacting with him in a normal way. Luke and Mark playing together, and most notably I can actually feel myself relax. My shoulders come down from my ears and a feeling of hope and anticipation of our future as a family floods my senses. And as I feel the warmth of peace wash over me, I abruptly end the fantasy, bottle it up and shove the sensations away, to be replaced by fear, trepidation and hopelessness. I realize now that I’ve been placing my hope and ability to be happy upon Mark being cured. For many of us, we delay happiness until we get things like a new job, or house, or go on vacation, but I’ve delayed it upon something a lot further out of reach and potentially years into the future, if it all.
And then the feelings of guilt creep in. I feel guilty for feeling sad about Mark. He’s still alive. I’ve received the gift of hearing his little voice say a few choice words. He’s able to walk, not in pain (that I know of) and doesn’t require much complex medical support, so this should mean that I’m thankful, right? But he’s incredibly mobile, has no regard for his personal safety and has just enough awareness to be dangerous. He has angry outbursts when he can’t communicate effectively which results in gut wrenching tantrums and screaming. And most recently we’ve become acquainted with Pica as he’s been eating non-edibles he finds around our house. So then the guilt is replaced by fear of how much harder our life will be as a he grows and becomes too large to manhandle. And thus the endless cycle of guilt, fear and anger ripples through me.
Obviously I can’t outsmart this situation. I can’t crush it with determination and grit. What I have to do is much harder. I have to be still and know that God will fight for me; not necessarily for the cure that I want and crave, but fight for me to make it out of the weeds; for me to see the light in the distance, and embrace what I’ve been given. He has abundantly blessed us, and I often can’t see it because for every video I share of Mark saying a word, there are hours of lining objects and shrieking while he paces back and forth across the dinning room pushing a Doc McStuffins cart, looking past us focused on something unknown in the distance. And then there’s the several failed attempts at potty training and for the past eight weeks he has oscillated between vomiting and diarrhea, leaving us completely baffled. I have gotten stuck in the mire and I can’t seem to pull myself out.
There’s a song that became my anthem when we started our journey. I would sit at my desk while I watched Mark fixate on the knots in our hardwood floors while he spun in circles. Coldplay’s “Fix You” would boom through the house…
When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse
When the tears come streaming down your face
‘Cause you lose something you can’t replace
When you love someone but it goes to waste
What could it be worse?
Lights will guide you home
And ignite your bones
And I will try to fix you
Fix him. That’s what I have wanted to do from the start. Restore him to the little boy that I want so desperately to have. One that doesn’t have to work so hard for every single thing. A little boy who can focus, engage and allow us to know his wants and desires. And a boy who doesn’t have a ticking time bomb of a genetic disorder.
And instead it turns out that it’s not him who needs fixed.
God gave us the gift of Mark. I will miss so much if I continue this numbing routine. My kids need me to be present, they need me to not be such a jumpy paranoid mess and they need to get to know the person who stands up to challenging situations and makes the most of them. I know that I’m capable of that, I was at 14 and I am now. I just need to get my head back in the game, focus on Christ and for the first time truly embrace that there’s more in this life that I can’t control. Little by little, I know I’ll find my way but this time it probably won’t be because of my own doing, and I think I’m good with that.
As a fellow SCN2a mom, a mother of three, a wife, a professional, a Christian, I feel you. I feel like I understand every emotion behind every word you’re writing because I’ve been there and am currently there too. The nagging fear of seizures, the constant vigilance to make sure she’s not eating pieces of her books or about to choke on something, the tantrums, the struggle to engage at work, knowing I’m not a good friend and the effort it takes to avoid isolating myself, listening to other people comment on their child’s accomplishments or how they are finally done with diapers and knowing my child will never do those things and that I might be changing diapers for the rest of my life, and the fear of who will change the diapers when I’m gone… I get it.
I’ve always been a doer, a fixer, and been successful at it, like you. I’ve tried so hard to fix my sweet E, spent so much time and effort, and neglected so many other facets of my life in the meantime. But the progress has been so painfully slow. We have very little to show for our efforts. She can shake a maraca when we ask her to now! It’s big, it’s imitation, it’s a step forward, right?!? One year of ABA and now she can shake a rattle like a 6 month old baby. Hurray.
So, I’m writing this to tell you I lost hope. I did. It’s gone. I lost all hope in E getting better, in her talking, in our family being beautiful and happy and normal like it should have been. And with that lost hope for my child, I lost hope in everything else in this world. I realized that I’ve been holding on to hope for my other two children and their lives and their success, for my husband and my marriage, for my career, for our country, for peace on earth and fixing global warming (ok, maybe I think that’s hopeless anyway). This world is broken and painful and hopeless.
The only hope that matters is hope in Christ. That is all I have and I’m still working daily to let it be all I need. I feel like I’ve heard that in church for a long time, “Christ is the only hope”. It’s only now that I feel like I truly know what that means.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18
The troubles don’t seem so light and momentary. They seem heavy, really, really heavy – literally my child is getting so heavy and I still have to carry her all the time! Guess it’s time to start exercising and get strong. And the troubles don’t seem so momentary. She’s going to be with us our whole lives. She won’t ever be independent.
I can see that those words are true, that this is truly light and momentary compared to eternity with Christ. I can see it – I don’t always feel it. God gave us some amazing, beautiful blessings, then asked us to do something hard. I don’t really know why. Maybe it’s achieving that eternal glory. It still feels hard.
The other evening I found myself looking at my husband and realizing just how much I love him. With all of his faults and imperfections (neither he nor I have any shortage!), I love him so much. And God loves him more. He created him just the way he wanted him to be, no mistakes. God doesn’t make mistakes. And he didn’t make a mistake with E either. To call it a gene mutation or genetic error just shows the shortcomings of medicine. God did not make a mistake in her SCN2a gene. He loves her just as much as he loves my husband, and my other two girls, and me. He loves her and us so much that he reached into the mire that we’re all hopelessly stuck in and sent the love of His only Son to pull us out.
So I’ve decided I can live without hope in this world, because I have hope in eternity and God’s amazing love in this world. I have enough love to keep working to create the best life possible. Enough love for my sweet girls, to read them books, take them to piano lessons, to have dance parties and mommy-daughter dates. Enough love to kiss my husband and hopefully show him how much I enjoy him and that there is still plenty of fun to be had together. I have enough love to call my friends and plan double dates and weekends at the beach. And I have enough love to keep working every day for my sweet E, to work on imitation and manding and sounds and eye contact – to give her the best life possible – to give all of us the best life possible while we hope in our perfect Hope.
Don’t get me wrong, it still sucks! This hopeless place full of love is not all unicorns and rainbows and sunshine. There are tears and struggles, fights and tantrums and fears. E’s struggles are not ok, autism is not ok, I’m not ok, we’re not ok. But I’m certain we’ll make it through all the same.
And in thinking about love, I decided that God clearly has more than 5 love languages. I know E loves me, but I’m not very good at giving or receiving love in her love language! It must be the 6th love language, or maybe 7th or 8th, or 100th. Who knows. But I’m really looking forward to figuring that one out. It’s there, I just don’t understand it well… yet. She and I will get there.
Angie, I do hope you are able to start getting more sleep. Sleep deprivation is torture. I mean that literally. When E finally got through her phase of crying until 4 am every morning, the return of my mental clarity was so wonderful and refreshing! You’ll be back.
Thanks for writing this so I could write too. It’s clearly therapeutic. 🙂
Wow!!! Renee. I feel like I owe you a copay for counseling! Yes. All of it. I think that might be my missing piece; losing hope in a cure, restoration of Mark, whatever you want to call it and truly placing my ONLY hope in Christ. Wow! Light bulb moment. Thank you thank you!
Sorry… I didn’t mean to sound preachy. Your words just hit home so much. Writing all of that down was very therapeutic for me. Now time to practice what I preach!
You weren’t preachy at all! Quite the opposite, very inspiring!
Thank you, Angie, for sharing your heartfelt, beautiful words. I can relate to every one of them. Know that you are loved and never alone. And know that you will meet that perfect Mark in heaven one day.
Thank you, Jenny! You are one of the people in our village who has always made me feel that I am not alone. Thank you for that.