What have you been doing during this quarantine time?
We've been super creative at our house! Lots of coloring, drawing, painting, and Play-Doh-ing!!
Text below was a wonderful article written by Sean Patrick Hughes, posted in a Medium publication called Human Parts. (I tried to post the direct link to the article but must not have done it correctly.)
I was on a ship headed out of the Gulf after three months of grueling summertime naval interdiction operations when 9/11 happened. We were extended indefinitely. For months, I spent six out of every 18 hours driving a ship. The other 12 were spent managing an engineering division and trying to find a few hours to sleep. We had no idea how long we would be there. It ended up lasting three months longer than it was supposed to.
I went 103 days without stepping foot on land.
On my next deployment, my team was sent to a remote part of Africa where U.S. forces were operating. We were supposed to be there for three weeks. We ended up staying for seven months. No internet. No running water. Just a cot, some MRE, a tent, and an ongoing war. We ran out of everything at one point or another, including water. My kidneys shut down. I was medevaced out. It was three hours by air to the closest modern hospital.
Some people have the sort of military experience that ends up as a screenplay for a combat movie. Mine was more like a post-apocalyptic survival story: Gilligan’s Island meets Cast Away meets Mad Max. I’m no war hero, but I can say with a straight face that I can face the suck with anyone. We’re old friends. I know the mental framework that’s required to get through things, and the dangerous mental patterns you have to avoid to stave off breakdown. By now, it’s my superpower.
It’s been 72 hours since my company sent everyone home to work and the district closed the schools in my county. It’s starting to sink in now.
This is going to suck.
I love my family. There’s no “but” here. I love spending time engaging with them. I don’t hide from the burdens of domestic life. I spend just about every waking moment of my weekends with my family. When I work from home, I sit right in the middle of the kitchen and feel the mess around me. It took practice to learn how to focus. I don’t do it perfectly, but that’s how I roll.
But this world we’ve all just entered into is different. The response to Covid-19 is a new sort of problem. At the center of it for us, and others like us, is a huge resource hole.
My 13-year-old son is autistic. And he’s a treasure. But it’s becoming painfully clear just how much we rely on a virtual army of people to help us care for him. On a weekly basis, no fewer than a dozen professionals and others share that privilege.
They are wonderful people: teachers, therapists, coaches, respite workers, and other volunteers who see engaging with him as joyful, meaningful work. And for the last decade, we’ve formed our lives around being able to depend on them.
On Friday, our network of support evaporated in an instant. The places that keep him in touch with the world outside his challenged sensory inputs are all closed. No zoo. No museum. No SeaWorld. No Disneyland.
He doesn’t understand what is going on. We try to explain. Some things he can understand, others don’t make sense. In his defense, many others without the excuse of disability aren’t getting it either. But for him, this change represents something inexplicable and unexpected — two things kids with autism handle particularly poorly. He asked us 20 times yesterday (no exaggeration) to go to the zoo.
It’s not a long list of tedious things you shouldn’t have to deal with. It’s an opportunity to serve your child.
Normally, this is the time when I say, hey folks, check in on your special needs parents. Stop by. See if they need a break. But I can’t say that in the middle of a global pandemic. We’re out of options. There’s no way out.
We’re stuck in the suck.
While the journey of a thousand miles starts with just one step, the journey of a long, hardcore, truly tough experience starts with a step of a different sort. That of acknowledging your reality. Owning it. Making it a part of you. Wearing it, as Tyrion Lannister says, like a cloak that protects you against the fragile and meaningless luxuries of another time.
Once you get there, you’re free to move on to three valuable thoughts that can get you through just about anything.
1. Every moment is just a moment. Every day is just a day. You can only live them one at a time. If you look at all the troubles you are about to encounter in any long and difficult endeavor and stack them up on top of you at once, you will collapse. The burden is too heavy.
See every moment for what it is. One moment. It begins. It ends. Don’t overvalue its joy or its hardship. Don’t project any reality as representative of some permanent future. As soon as you do, you’ve let water seep into the crack. When the real hard winter comes, it will freeze and split your world wide open. That’s when you quit. Except you can’t quit what you can’t quit. And all there is from there is suffering.
2. Be grateful. It doesn’t matter what you are going through. Gratitude applies. If you can’t think of anything, then spend some time with the miracle that is existence.
Grab the dirt beneath your feet. Breathe the air around you. Catch the light that shines off of everything you see. Realize the infinite space and time it all had to travel to be here for you to experience. Realize the millions of ways the matter that is you could have been organized for you not to exist.
Entropy is the natural order of the universe. Celebrate the forces that stave it off to create the cosmically unlikely event that is existence. If you spend some time with that thought, you’re ready to celebrate the unlikely miracle that is your existence. And you can’t help but feel gratitude.
3. See yourself in the service of caring for your child. It’s not a long list of tedious things you shouldn’t have to deal with. It’s an opportunity to serve your child.
We weren’t sitting in the bush in Africa getting our asses handed to us by physics and nature. We were serving the American people. And if you don’t think that serving your special needs child is as honorable as military service, you’ve read one too many Navy SEAL books. Those guys would tell you the same. Trust me, I know them all.
Through the lens of service, the tedious becomes honorable.
I’ve cleaned more crappers and written more admin reports than I’ve gone on combat patrols by a factor of 100. That was service, too. Through the lens of service, the tedious becomes honorable. Let that all sink in for a second. Then let’s bring it back to now.
We’re early on in this crisis. None of us know how long we’ll be here. Special needs parents are looking up at a mountain that’s higher than everyone else. For those of you with just good old fashioned standard-issue kids, all of this applies too, because lord knows eight weeks of lockdown with them isn’t easy either.
Keep these thoughts in the front of your mind. Pray them if that’s your thing. I do — it works. When your world gets small and tough and you’ve come to the conclusion there’s no way out of what’s coming, remind yourself:
I had a rare hour to myself yesterday and decided to take a walk at one of my favorite spots, on the beach at Mukilteo. Found a heart-shaped rock and it made the morning even more sweet. Sometimes I need to remember how these moments of quiet reflection are so good for my soul. 💙💙💙
Some days I am blown away by the seemingly small, yet utterly important ways my Heavenly Father shows me that I am loved and understood. Eric is out of town for the weekend, so I get to play “single parent” for two days. I know so many dear friends and family who, for them, this is a daily reality. I have NO IDEA how they do this! The mental and physical toll is so exhausting. I am truly lucky to have such an amazing partner.
Saturday is bath night for Elise, so she can be clean and groomed for church the next day. Bath time is ALWAYS a struggle, a battle of wills, a slippery fight with long soapy limbs and high pitched screeches that echo in the bathroom. These fits frequently escalate to a seizure in the tub, so we do our best to prevent the meltdown as much as possible.
Unfortunately, prevention is a two-man team effort, and I’m down a man. I was dreading tonight. I knew if she had a seizure in the tub I would be on my own to pull her stiff and slippery body out.
Tonight went so smoothly, though! A primary song from church kept running through my head so I started to sing. Elise loves music and she recognizes all the primary songs. She sung with me and nodded her head while I scrubbed her down. We sang song after song and were still singing while I was drying her off and getting her dressed. There was such a sweet and gentle spirit in the room, and I got choked up as I looked in her beautiful eyes while I sang “Families can be together forever, through Heavenly Father’s plan. I always want to be with my own family, and the Lord has shown me how I can...”
Now Elise is tucked into bed, peaceful and sleeping. I am grateful for tender mercies which help me to understand that even though there are bad days and I mess up big time, there are also moments of sweet peace and comforting quiet. There are moments when I can look into my daughter’s eyes and not only see a precious child of God, but feel a divine connection which I am a vital part of.
Elise's journey, and our journey with her, began more than fifteen years ago. I can't believe it has been fifteen years...
Fifteen years of heartache and joys, struggles and triumphs, regression and advancement, laughter and tears.
As I reflect on those first few years I am reminded of how difficult those days were. The bleakness of the future weighed upon me like an impossible burden, one that I physically could not bear. I mourned the loss of this child's future life, a life of growing up, creating a life for herself, even marrying and having a family of her own. Everything looked gray...endless gray, without color or light.
But somehow we got through those years. We grew stronger. And as we watched our little girl grow, the light she brought into our lives became more and more obvious. Things even started to get a little easier.
For several years, once we figured out some key combinations of medications, Elise had no seizures. She may have had a few breakthrough seizures when she spiked a fever or was fighting a virus, but in general the seizures were well managed. We began to breathe easier. This was not so difficult, right? This is so much better than we thought it would be! We basked in the comfort of cruise control.
Elise made great strides during this time. She learned to walk, she started saying some coherent words, she could recognize the letters in her name, she could hold a pencil or crayon and draw on a piece of paper.
You can't remain in cruise control forever, though.
When Elise started in middle school, things began to change. Hormones were starting to kick in, wreaking their havoc on EVERYTHING! Suddenly she wasn't as steady on her feet. She would fall more often. Her dexterity decreased, and she started to drool more. She began to have more breakthrough seizures--once a month, then twice, then every week. Then the drop seizures started, where she could be walking or sitting at the table and suddenly drop like a rock. Or the grimacing seizures, where she would make a gut-wrenchingly pained grimace on her face and turn her head so hard and tight I was afraid she would injure herself. Or even worse--the screaming seizures, where she would suddenly have a look of absolute terror in her eyes and scream and scream and scream.
What happens to a parent when they watch their child go through so much pain, terror, exhaustion? What happens when this starts to become so common that it is the family's new normal, when this is their everyday life?
I knew that I had to be strong. Elise needed me to be there, to take care of her needs. I also needed to take care of our family. I have three other children and a husband. They all require feeding and clothing and housing and loving....That's what moms do. We nurture, we care, we lift, we protect. I thought that I was okay.
I was not okay. And not only was I not okay, my family was not okay.
It took almost a year for me to realize that I was not okay. It took almost a year for me to ask for help. It took almost a year for me to recognize that something had to change. I knew that our situation would not change. Elise's condition would never miraculously disappear. I was drowning, and I was taking the rest of my family down with me because I was afraid to reach out for help.
This post is for the moms--
The moms who can't stop crying because they spilled a bag of sugar. The moms who can't crawl out of bed in the morning because the weight of the day is too much to face. The moms who suddenly scream at their kids because they refuse to pick up their shoes in the entryway. The moms who no longer respond to friends' texts and cannot bear to go anywhere that requires socializing. The moms who have to apologize to their kids' teachers over and over again for not completing homework. The moms who can barely put cold cereal on the table for dinner. The moms who stand in the shower at the end of the day sobbing, where no one can hear her.
You are not alone.
This journey is hard. Some parts of the road are downhill, where life flies by so quickly you can barely catch your breath. But other parts are uphill, with ruts and pits in the dirty pavement, with obstacles to maneuver around, and with a vehicle that runs out of fuel.
Be sure to fill your tank.
I am still learning how to do this. It hasn't been easy. I started on my knees, pleading with my Heavenly Father to give me strength and know what to do. I felt prompted to reach out to some close friends, friends who I knew would love me and embrace me no matter what. Then I saw my doctor, started taking some medications, and went to therapy sessions. I learned to talk about things, to express my fears, and allow myself to be heard. I cut myself some slack, released my self-imposed expectations, and let others serve me. This was not an overnight change. It has taken months and months, with countless teary phone calls, generous hugs from friends, precious and raw conversations with my husband, and quiet hours on my knees.
Am I "better" now? Yes, I am better than I was before. Does that mean I am "okay?"
Before I was lost in the dark, blind and numb. I vascillated between feelings of panic and a crushing weight on my back to periods of staggering numbness, where I could not remember the last time I had felt true joy.
I still feel these things at times, but the periods are much more brief. I am able to see the light and joy at the end of the darkness. I am able to remember faith and overwhelming peace. I am able to recognize the astounding ways my family and I have been blessed. I am able to remember hope.
I am able to be Elise's mom.
On August 27th I wrote a heart-felt letter to our mayor asking her to consider adding the city of Everett to the list of those who will honor Lissencephaly Awareness Day on September 8th. To my surprise and delight, she responded back the very next day with the signed proclamation! The lissencephaly community has been trying to make this day a reality all over the US, and the organization We Are Rare (weareRARE.org) has been helping them out.
It may not seem like much to others, but having a daughter with a rare neurological condition has opened my eyes to the incredible value of simply being recognized. Community awareness is such a vital part of helping those who are living on the fringe feel part of the community as a whole. The simple step of recognizing Lissencephaly Awareness Day is the perfect way to open the door to community involvement and support for special-needs children like Elise. To meet Elise is to know the meaning of love and light. I want more of our neighbors to get to experience the amazing impact these children can have on our community!
Thank you to Mayor Cassie Franklin!!
My husband and I have been blessed with four amazing children. We love each of them in special and unique ways. Our third child, however, is extra special to our entire family.
Elise was born April 15, 2004 in Edmonds, Washington. I discovered that I was pregnant with her shortly after moving our family away from the comfort and security of home in Idaho with the rest of our relatives, up to the glorious gray skies of Washington. The pregnancy itself was relatively uneventful, but my rollercoaster of emotions was another story. Although I saw our big move as a family adventure, I was still struggling with being so far from our families. And I missed the sun. Terribly. I hoped that with the birth of a sweet new baby we would feel more settled in our new location.
Elise’s birth was short and sweet. She barely gave us enough time to get to the hospital before she decided to make her entrance into the world. We were elated with our beautiful little girl. Financially we were struggling, however. Our house in Idaho was not selling and the renter, who we relied on to keep us afloat, lost her job and was unable to pay her rent for month after month. Since I was no longer working, and we could not afford to pay both our mortgage and the rent for our apartment in Washington, we were in a tight spot.
I ended up moving back to Idaho with a two-week-old infant and two other children in tow. I hired an attorney and took back our house. To ease our finances, my husband Eric let our apartment go and stayed with good friends in Washington while he continued to work from there. My mom watched the kids as I went back to work, having only given birth to Elise less than a month before.
It was a tough time. I put our house back on the market, was working and single parenting, while trying to keep the house in pristine order for prospective buyers. Eric was only able to fly home to see us every other weekend.
I remember lying in bed late one night, with Elise’s perfect tiny face nestled snuggly under my arm after I had just nursed her for the second time that night, and feeling so alone and overwhelmed. Eric was five hundred miles away. I had to go to work in the morning, and I was missing out on all the precious bonding time you typically get with your newborn. I didn’t know if the house would ever sell. I didn’t know if we were going to make it financially. I didn’t know if there was anything else that could possibly be added to my burdens, or if I could bear it.
Of course it is at our very lowest that we have to learn how to dig down the deepest and find our faith. I was about to discover how deep I would have to go, because our journey was only just beginning.
One hot weekend in July, Eric happened to be home with us. He was holding Elise in his arms, where she always seemed happiest, when he suddenly jumped up yelling for me to come. I ran into the room only to see my tiny baby shaking violently. It seemed to go on forever, and I could see her gasping for air. Her lips started turning blue and both of us were in a panic. Finally the seizure stopped and Elise went completely limp and was unresponsive. For me, time seemed to stand still as I thought that I was witnessing my precious little girl pass from this life. Eric was throwing the two older kids in the car, saying it was faster to just drive to the emergency room since we happened to be so close. My little three-year-old Ethan did not even have any shoes on, and we did not have time to look for them.
I remember so vividly the thoughts that raced through my screaming head as we flew to the hospital. I was sitting next to Elise in the back seat, holding her tiny limp hand, touching her pale face, and pleading to my Father in Heaven, “Please don’t take her from me, I’m not ready to let her go. I haven’t had her long enough.”
At the hospital the test results were inconclusive. She had two other seizures before they were able to get her medicated enough to stop them. None of their scans or tests showed any signs of infection, or any other reason for her to be seizing. They dosed her up on anti-seizure medicine prescribing it for an indeterminate length of time, proclaiming that they had no way of knowing what was causing the seizures, and sent us home the next day.
It took six more months, with continual issues with Elise's health, before we were able to get a real diagnosis. In the meantime, we were finally able to sell our house in Idaho and moved fully back to Washington. I returned to the family practitioner who had delivered Elise and she referred us to specialists at Seattle Children’s Hospital. It was there that our questions were finally answered about why our little girl was having seizures.
The meeting with the physician's assistant at Children’s is all a blur to me now. I remember hearing the word “lissencephaly,” but my brain stopped working when the woman said that children with this condition generally have a two-year life expectancy. She pulled out MRI images, showing us the difference in Elise’s brain anatomy from an average brain and gave us a few printouts of support groups and special needs services, but none of it was making sense.
Was I in a dream? Could this possibly be happening? We drove most of the hour-long drive home in stunned silence, until the tears started flowing. After more than a year of emotional strain with all the hardships that we had endured, I didn’t know that I could shed any more tears.
As soon as I got home I poured over the internet, looking for any kind of information that I could find on lissencephaly. The information was not good. Lissencephaly means “smooth brain,” in that there is a general smoothness to its shape, rather than the normal ridges and valleys. This change in brain structure interferes with the proper neural synapses, causing seizures which generally are difficult to manage, along with severe developmental and physical delays. Most children advance only to a three- to five-month developmental level and struggle with the motor functions of chewing and swallowing, causing aspiration and infection. The children that I found who survived longer than two years were in wheelchairs and had feeding tubes.
It was a very dark time. I felt like I was drowning in a dark pool. No matter how hard I struggled to push myself up, the weight of my reality kept pushing me deeper and deeper. Well intentioned friends tried to help but I was unable to talk about it. I felt that I would be crushed from my fears and grief.
I was afraid that I would have to watch my little girl languish in a difficult, brief life. I was afraid that she would not be able to enjoy happiness in this world. I was afraid that I would not have a personal relationship with her, that I wouldn’t be able to see her own little spirit and personality coming through the disability. I was afraid that I would not be strong enough to carry this burden.
The only thing that helped was prayer. I poured my heart out to my Father in Heaven. I asked, “Why did this happen? Why my little girl?”
I did not receive an answer through words, but what I did feel was love. I felt an overwhelming, all-encompassing, undeniable blanket of peace to my heart. I did not know what would happen. I did not know what our future trials would be, but in my heart I knew that I could have comfort and peace as a constant companion. I was never alone, and neither was my precious little girl.
Through the last fifteen years we have seen some amazing miracles. Elise started physical therapy right after the diagnosis was made. Her medications were adjusted to better suit her condition, and she has top-notch doctors looking out for her. This road may be bumpy, with plenty of potholes that we have to navigate through, but Elise is the first to want to jump in the car and ride!
Elise’s milestones are a little different than the normal story, but they are highly celebrated at our house. She sat up on her own at eighteen months, started properly chewing her food at around three years old, and could stand on her own at five. At age eight, she miraculously took her first steps. The first year was aided by a walker, but she got stronger and stronger and now is running around the house.
Life with Elise has been an absolute joy. The amount of love she exudes to everyone around her is all-encompassing. She is everyone’s friend and everyone’s favorite. She says hi to anyone that she meets and goes in for a hug before they even know what hit them. She is a light of continual sunshine and love. She is our little Miss Sunshine.
It has been such a privilege and a blessing for Elise to be in our family. She always helps us to see the good in the word, and I feel greatly blessed to have the opportunity to raise one of our Father in Heaven’s choicest spirits. As I reflect on what I have learned by raising a child with a disability, I think of the quote by Dieter F. Uchtdorf, who said, “How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?”
Some may see having a child with a disability as a trial. Before Elise joined our family, I used to think so as well. But then I was plunged head first into that world myself. I am constantly bombarded with the day to day struggle of feeding, dressing and caring for a child with special needs, one who is completely reliant on me for her most basic care. I live in continual fear of the next episode of seizures, with the overhanging possibility that the next time we won't be so lucky, and she could have serious after effects.
But I have also been enveloped in the warm embrace of Elise's monster hugs and caught her blown kisses from the air. I have been surrounded by the music of her infectious laugh and marveled at every miraculous milestone.
I have never been so grateful for a trial in my life.
Elise has always helped me see the rainbow, even before it is ready to be revealed, all because I have learned to not be afraid to get a little wet.
This blog is all about this spunky, sweet, independent, loving girl and what life is like living with lissencephaly. Welcome!!