Space to Be Brave

In the very early days of Mark’s autism diagnosis, I found myself in a little, darkened observation room, perched in front of a two-way mirror watching Mark during his special group speech program alongside other parents, who I would learn later were at the exact same spot on their journey. One of these parents has become a dear friend of mine, and as she put it when we first began chatting, she had unpacked her bags in the land of grief. She grieved what could have, should have and what she hoped would be for her youngest child of six.

Receiving a lifelong diagnosis for your child is a grieving process accompanied by all the stages of a loss. It’s tough to get to the point of acceptance, and often the path isn’t linear. We bounce back and forth between anger, bargaining, and sadness, flirting with acceptance but always hoping that our children’s lives will be better than professionals predict.

And while we’re processing our grief, we make brave choices to go out into the community with our special children because part of what we long for and grieve, is the ability to do things as a “normal” family. Perhaps we want to go out to a restaurant, pumpkin patch or a school function, we must make a brave choice to go forth and give it a try. And when this bravery is met with judgment, lack of understanding and stares, we question our choices and ourselves.

So when I received a distressed text from my friend yesterday afternoon that a couple of other moms stared at her son at a picnic at their church, my heart sank because I’m familiar with the risk she took. The risk to join the world and not have someone keep their child at home or stay at home herself. This is a choice we make each and every time we have an obligation outside of our normal routine. Who stays home, who goes and when do we be brave and give it a shot. So when we make the bold move to take our beautiful, special child out in the world, we shouldn’t also shoulder the burden of educating people, especially other parents. Raising a child with special needs is an enormous responsibility. Educating and encouraging people to demonstrate grace and acceptance should not be a part of this responsibility.

So to the mothers who stared at my friend and her son, this post is for you.

When you chose to attend this picnic, you probably didn’t think about who would be there and if the number of people in the crowd would overwhelm your child, create a social story to prepare your child for what was coming, or wonder specifically what food would be available to determine if you would have to pack your own food and I assume you didn’t carefully craft an exit strategy so that your other children would be least impacted, because that’s another one of our responsibilities, lessening the burden of difference for the siblings; creating an illusion that things are normal when everyone in the family is painfully aware that they are not.

Please understand that within the walls of our homes, our children are free to be who they are, special needs and all. And we are free to be their parents. The differences often melt away, and we feel the freedom to love our children for who they are, and focus less on who they’re not or what they can’t do, and take a rest from the grief. The problems arise when we leave our bubble, which made my friends decision to attend a function with her whole family that much more admirable.

I’m familiar with the feeling of the stares. When I’m feeding my four-year-old purée from a baby food jar because he never got the hang of pouches or grabbing his face with my open hand at his non verbal request or weathering a tantrum because Daniel Tiger stopped playing on my phone, I feel tense, waiting for someone to say something, practicing my shaky speech in my head, preparing for the moment I would launch into my emotional defense of my son. So while an outing to Panera or to a church picnic is pretty benign for most people, it’s really quite hard for us.

So the next time you notice a family, who may appear to have a member that’s different, remember what a brave choice it may have been for them to be in your presence. And the best thing you could do, other than the obvious refrain from staring, is to make our brave moments teachable moments for your children. Teach them kindness, grace, and acceptance. Talk with them in the car on the way home about how some children have challenges but it makes them no less. Help them to see what a gift it is to celebrate difference. Show them how great it would be to befriend our children. And if you can do just one of those things, you will be making a significant difference in the world for everyone and no longer will it be our responsibility to educate the masses. We can enjoy more spaces outside of our homes knowing that we won’t be met with stares and judgment, making our grieving process just a little easier and allowing our children the opportunity to participate without feeling like they are unwanted. Stop staring, accept difference boldly and demonstrate the grace that special needs families most desperately need, and allow us the space to be brave.

 

Hard Things

The night before I went into labor with our third baby, I was feeling restless and wrote a draft blog post about facing challenges and doing things previously thought impossible. If someone had told me years ago that I would have a child with special needs and a rare genetic disorder with no cure, and known deaths among children that share the diagnosis, I would have never thought I was capable of enduring such a thing. Yet here we are, and somehow God has conditioned me to handle the bends in the road, and equip me for the dark times that we face. So when I began to consider how we would bring our next family member into the world, I thought about delivering naturally, and how this was also something that I surely was incapable of doing. And in addition to this challenge, I was also thinking of my family and all that they have had to endure in the past few months.

My grandmother’s health has dramatically declined following a cancer diagnosis which began to reveal itself after she collapsed at my sister’s college graduation in May. The picture below was taken an hour before. I have watched my parents and sister rise, turning into patient, selfless care givers, providing round the clock, direct care in their home. My mom turned their dining room into Grammie’s room equipped with her hospital bed and curtains for privacy. My dad wakes at night to administer medication. They have been researching and preparing meals to help her fight her cancer and have been diligently providing personal care each day and night while she tries to regain her strength for more chemotherapy. If you would have told my parents and sister that in a few short months their lives would be turned upside down as they weathered this cancer storm with Grammie, I’m fairly certain their reaction would have been similar to mine when I think about facing the road of special needs, but they are powering through and despite the ever changing challenges of their present landscape they have risen to the occasion and provided a level of care that can only be admired.

 

 

People have said to me, “I don’t know how you do what you do with Mark”, and other than just doing it because I see no other alternatives, I see now where I get it. We rise, and we love, period. And this leads me to think about a mantra from one of my birth podcasts, “you can do hard things”.  

I wasn’t entirely happy with the blog post I had started, shelved it and went to bed. I then woke up at 4 am in preterm labor facing the unknown, and just like usual I took full responsibility for going into labor too early, not even considering that perhaps this could be a good thing.

I’m pretty good at blaming myself. I’ve really perfected that art over the years. As we embarked into the special needs world, I enrolled Mark and our family in as many research studies as possible, and like many of Mark’s clinical assessments and evaluations, these opportunities usually involved in depth questioning regarding my pregnancy and delivery of Mark. I even did a two-hour interview just about everything I did, ate and experienced while carrying him. I have relived it so many times, scrutinizing every decision. Each time I would answer a question like medications I took or interventions I had, I wondered what it meant. Whatever it indicated, my assumption was that it was clearly bad, and obviously my fault. 

So when we began talking about having another baby I spent an entire year trying to be as healthy as possible keeping these types of evaluations in the back of my mind and trying to maintain my tight grip on control. 

I found a nutritionist that specialized in treating neurodevelopmental disorders in children with autism and prevention in pregnancy. I did a number of tests that drove a tailored supplement and nutrition plan in anticipation of a future pregnancy. I bought a pill suitcase and began taking over 15 capsules of vitamins and supplements per day. I tried to stick with whole foods, including lots of vegetables and fruits. I stopped using conventional deodorant and switched to using a salt rock.  I drank out of glass containers. I changed all of our cleaning products over to natural alternatives. I had my hair tested for metals and toxins and then began using magnesium baths to detox.

Every new autism study that provided a clue at a correlation prompted action from me. I skipped the flu shot. Took extra Vitamin D. And when I did become pregnant I avoided every intervention possible. I didn’t want ultrasounds or extra Doppler exposure. I turned down all vaccines and began exploring options for natural child birth. I enrolled us in a hypnobirthing class and felt a little sheepish that I was a third-time mama taking a class that’s clearly designed for couples expecting their first. But I was determined to bring our baby into the world with as little intervention as possible so that if ever we end up on a similar journey as we did with Mark, I could answer “no” to those questions and alleviate the tremendous guilt I’ve carried around that I did something to cause Mark’s problems. 

I realize now that the PTSD that is so common among parents of children with special needs was coloring my judgment and fueling my neurotic efforts. Mark was born with a genetic condition that was not inherited from us. I knew this, yet despite the science behind it, and the fact that I tell other mothers on a regular basis that their child’s diagnosis is not their fault, I still felt narcissistically responsible. 

So when our son Luke made it abundantly clear that he was coming into the world five weeks early, my anxiety kicked in and I felt so upset that despite all of my best efforts this baby was going to be early, setting him up for possible delays and potentially other life threatening problems. The number one question I am asked on a developmental questionnaire pertains to the gestational age. I would now have to check the premature box.

Once we determined that my labor could not be stopped, I gave in and began employing all of my hypnobirthing techniques. I closed my eyes and breathed through each powerful surge and after many hours of slow, uncertain labor, I began to panic. I told Ike that I couldn’t do it. I was shaking, feeling less confident as I worried about our now preemie baby. The special nursery bed was set up. The neonatologist was called. I was overwhelmed. It was too hard. Ike encouraged me, reminding me that this is what we worked for, and the reason I made him spend several Sunday afternoons in a yoga studio watching natural child births, and ultimately what I had wanted. Within minutes Luke was born.

 

 

After he was placed on my chest, our midwife pulled up the umbilical cord to show us this fat, tight true knot in the cord. She said it was divine intervention that he came this early. I later Googled this and words like restricted growth and still borns popped up. It became clear that had he gone to term the outcome may have been much grimmer. 

 

 

When we returned home, I met our nurse we hired to encapsulate my placenta. (I’m aware of how controversial this is but I did my research and felt like it was a good choice for me).  The first thing she said was “did you see that true knot? I saw it and how thin the cord was on the one side and said a prayer of thanks”. 

 

 

How loud does God have to be for me to hear Him? This wasn’t about me, or about what I did or didn’t do.

 

All of my hippy dippy crunchy granola shenanigans couldn’t get in the way of God’s perfect plan.

 

Nothing was anyone’s fault, it was God’s will. Luke’s plan unfolded the way it was intended and so has Mark’s, genetic mutation and all. No mistakes. This is part of their and our journey.  

I watch Mark do hard things every day, and he has inspired me to realize that I can do hard things, like natural childbirth, and having the strength to be his mother and advocate, and so can my family in their intimate care for my grandmother. We rise and we do so because of God’s goodness and grace.

 

The Rules

On my way home I pass two houses and I often look to see what toys are in the yard. I don’t know these families but they have little boys that are the same age as Mark. I discovered this when Mark was around one and we had just moved into our house. I would see their kids toddling around when Mark couldn’t walk. As I drive past their homes now I’m always interested to see what they’re into, big wheels, slip n slide, ride on tractors,  all things that aren’t part of our repertoire but that I wish would be. It always stings a little but what hit me this week was watching one of the little boys ride on the lap of his dad on the lawn mower. That could never happen. Not according to the rules that have begun to form and solidify in our house. 

In the past six to nine months we’ve slowly grown to follow a set of strict, frustrating rules to keep the boat from being rocked.

If we go to Panera, we must sit in certain places, with Mark in his seat on the end of the table watching Daniel Tiger on my phone. 

If we go grocery shopping, it must be to Wegmans, as a family. 

If we go to his school, we must return home on our usual route and may not deviate by even one exit. 

Going someplace new? Expect a meltdown. 

New therapist? Tears.

Stopping at the mailbox on the way out of our lane? Song singing must commence in order to prevent an unraveling moment. 

Fireworks? Family vacation to the beach? An afternoon at the pool? Nope, nope, nope. 

Unexpected stop for gas? Expect screaming. Need to go to the post office? Or run in to pick up pizza? Good luck, comrade. 

So this week when we had to go from his school in Odenton to downtown Baltimore for his lab work appointment this meant complete screaming, for the entire 35-minute car ride. 

Life is messy. As much as we try to stick to routines, it’s impossible to do everything the same and it’s not good for anyone in the family, including Mark. Yet we know that to keep the peace it’s what we strive to achieve. We dread unexpected and new experiences because we know that they will confuse, frustrate and frighten Mark. 

It broke my heart to leave him home from our family trip to the aquarium last month but I knew that it was highly likely to upset him and Jillian wouldn’t be able to experience it. As we gear up to attend the FamilieSCN2A conference in Delaware next week, which will require an overnight stay in an unfamiliar space, I am incredibly anxious. New roads, new state, new gas stations along the way, many places and buildings with which he’s never been.  I can only imagine how frightening this is going to be for him. 

We recently had an appointment with a Developmental Optometrist who explained that Mark isn’t able to use his vision properly. He can see, but the images he’s receiving, his brain isn’t interpreting the way it should. So when he’s in a new space, he’s frantically trying to touch everything, and take it all to understand it. What this looks like is stim behavior, pacing and running back and forth between doorways and furniture, but the doctor believes that Mark is creating a mental map to better understand where he is in space. We see a lot of truth to this and as we work with our behavior therapy team and new IEP team for school this fall we will definitely be taking this into consideration.

But we are where we are, and we’ve slowly become so boxed in that I didn’t realize how cornered we were until I saw that little boy riding around on the tractor with his dad. That could never happen, not right now at least. 

Social stories and video modeling, along with practice have become how we slowly navigate new and scary things but it’s a lot of work to prepare him for a world that he can’t understand and I often feel like I’m not up for the challenge.

As I stood in the lab room this week while the medical staff struggled to get Mark to sit still enough to get his blood to draw, as each failed attempt escalated the screaming, sweating and gagging, I stood against the door and I could feel my heart racing. I quickly sent a text to my mom to tell her what was happening and to ask her to pray. Ike and I were both silently pleading that God would allow them to get his blood to draw so that we could bolt from the hospital and then I suddenly burst into tears, which prompted a nurse to remove me from the room. I have watched my little boy have his broken bones set, be placed under anesthesia, held him while he’s undergone so many uncomfortable procedures while he screamed. I would often hold his face and sing into his ears as I hoped I could make it through and calm him, but not this day. This day the enormity and gravity of our uphill challenge, and perhaps my pregnancy hormones took over and crumbled me. Nurses asked me if this was my first time watching him give a blood sample. No, I said quietly as I continued to plead in silent prayer that the screaming would stop. Eventually, it did and my sweet boy emerged sweaty, tired and bruised from all of the botched attempts, which were of no fault of the staff, according to the nurses, they had their best in that room. Mark was just incapable of not panicking and flailing. Thanks to an angel named Ali from the Child Life department the torture ended when she suggested a comfort hold that finally worked. And it’s moments and people like that who shift me to focus on how God is moving in the midst of the chaos and discouragement. 

I have to remember that because if I start to think about the rules, the boxed in feeling and the giant autism/genetic mutation mountain in front of us, I will end up in a tearful heap just like several nurses and patient families found me. 

So I am choosing to pick my head up and warrior on. We will prep him for his EEG appointment in a few weeks, make our bailout plan for our trip to Delaware and trust in the Lord that He will provide us with the ability to care for him, send us people along the journey to support him, and for us love him and accept him how he is, even if that means beach trips are out and spur of the moment adventures have to be rethought. 

I was reminded this week by a dear friend that it’s is an incredible responsibility to make decisions for someone who can’t adequately communicate. And yet Ike is right, it’s also an honor to care for him. When not in fight or flight mode he’s the sweetest little boy, with his sparkling blue eyes and an adorable dimple that displays during every smile and giggle, which, thankfully, are quite frequent. We may have lots of rules that other families may not have, but we have the privilege of loving and caring for the most joyful soul we’ve ever met. 

The Unsung Heroes

I have had the unique opportunity to connect with people who are curious and concerned about autism, usually in terms of a loved one. I always make time for these calls, texts, and emails. The ones that I seem to get the most and those that really touch my heart are the calls that come from grandparents. They’ve noticed the differences in their grandchildren, and have been worrying for some time. They gently try to encourage their children to seek another opinion when all too often the general pediatrician dismisses the raised concerns. Parents are reassured with such comments as “all children develop at their own pace” “boys are slower than girls” and “let’s wait until they’re older to jump to any conclusions”. (I could write a whole post about physicians and their very flawed “wait and see” logic but I’ll save that for another day). And more often than not, the parents of the child of concern are in a very common place of denial, retreating from the fear that something really could be “wrong” with their child. This usually delays intervention and painfully strains relationships mainly between mothers and daughters. The story I’ve heard time and time again has been, that if the grandparent continues to push them for help or point out what they see, they will lose contact with their grandchildren. I get it. I really do. I understand that as a parent we want to believe that our children are perfect, that others jump to conclusions and that we know our children best. Yet, I’ve also learned that it’s a very vulnerable, frightening place to be to accept that my little one is potentially telling me something, even though I’m not prepared to hear or see it. And even though I’m not a grandparent, I can also see and hear the pain that they feel watching their child struggle to see a situation clearly without defensiveness. The helplessness and distance that they experience are so heartbreaking and yet their love for their children and grandchildren is so strong that they will continue to push even though it could mean that they may damage their relationship.

 

And so today, for Mother’s Day, I recognize and acknowledge the unsung heroes, the grandparents in our life who have weathered this storm with us, with grace, love, patience and understanding. Because there was the day that I was in denial and angry at the assumption that something was wrong with my baby, yet our parents walked with us as we waded our way through the dark waters of the diagnosis and continue to hold us up on our journey.

 

When Mark was born we were living with my parents because we had sold our house shortly before I found out that we were pregnant. And when we brought Mark home from the hospital, I settled into days of my maternity leave where I would visit with my mom on breaks as she worked from home. I would swing him on the back porch and she would come out and chat with me. As the weeks went by, Mom began to notice the differences. Mom would comment on his lack of eye contact, staring at the ceiling fan and unresponsiveness to us. And I would shrug it off, knowing deep down that something was wrong and yet not being nearly as ready to face it. I look back at the beginning and I see that my mom wasn’t ready to face it either but she was concerned, worried, and prepared to put her own feelings aside to get him help. She’s my mother and his grandmother, and she was far more equipped than me.

 

 

Fast forward a year later and the signs of autism, if they weren’t obvious before, became painfully clear. We had moved into the house we built and when we visited my family on Sundays, we would come in the door and Mom would greet the kids excitedly. When Mark wouldn’t react or flinch, I could see the concern reflected on her face, the concern I felt and buried deep inside. I’ve always struggled to outwardly express my emotions and I felt overwhelmed to see my feelings on her face. Even at that point, I was still grasping at straws trying to find other diagnoses that fit him. I even went as far as to take him to a specialist at the University of Maryland because I was convinced that he had a vestibular disorder of his inner ear. It wasn’t autism, he just needed surgery to correct the imbalance and it would stop the spinning, and all would be well. There were many of these rabbit trails my family watched me go down in an effort to explain away something that terrified me.

 

Once Mark received his diagnosis, the denial had waned, and it was replaced with aggressive action. If I couldn’t avoid it, I needed to fight it. I quickly signed Mark up for an intensive speech program. My mom used her leave time to go with me several days per week to have Mark be seen at Kennedy Krieger for intervention by a speech pathologist. She sat on the floor with me as we tried to engage Mark in the speech exercises while we watched him retreat to corners of the room to spin in circles. It was hard to watch and I know it broke my mom’s heart just as much as it broke mine.

 

A couple months later, when my aunt offered us the opportunity to go to California for an experimental round of brain treatments, without hesitation, I jumped at it. My parents drove us to the airport, and stood with me, two years ago on Mother’s Day, as we watched Ike helplessly board a flight with Mark who had just turned two the week prior. As we ate at Panera that night to celebrate Mother’s Day, I was on edge and nervous and I could tell that my parents felt similarly, but they were brave for me, and for Jillian. We hoped that this brain treatment would “fix” him and that he would come back, recognize our faces and give us the hugs that we had longed for, and yet that’s not what happened. Once again, my parents took Jillian and me to the airport and we waited for Ike and Mark at the gate, and my aloof little man looked all around but not at us. Again, I could see and feel my feelings coming from my parents.

 

 

A few months later, Mark started a program that would require me to drive him an hour and a half away four days per week. Once again, I jumped at the chance, signed him up and determined that I would figure out the logistics later. And we did. My Dad adjusted his schedule at work, working four ten hour shifts and using his day off to drive Mark down the road. Ike and I took our turns, and we even called upon my sister and her boyfriend. As time went on, my in-laws took time off from their jobs to drive him. We were determined to get him there and our village stood behind us.

 

 

And after Ike began his new job, and had no leave time accumulated, my mom would take off work just to drive with me to far away appointments, those that would involve wrangling a screaming child as I strained to hear what the doctors were saying while navigating congested cities and traffic. This was even in the midst of her cancer diagnosis, surgery, and treatment.

 

 

My mother in law eventually retired and became Mark’s caretaker during the day while we worked. Both my father in law, Mark, and Becky would take him to school several days per week, and still do, driving him to KKI, as well as his other therapy appointments. And over the past year, Mark has become quite the handful, screaming for reasons we can’t understand accompanied with messy bowel movements multiple times per day. Becky would wrestle him on changing tables that were exceedingly too small and in the front seat of our small sedan that we used to drive him to school, a feat I still can’t wrap my head around. She has a remarkable ability to roll with the strange punches and that has blessed our family in so many ways. Yet I know that it wears on her, much like me, to deal with the screaming that we’ve been experiencing as he struggles to acclimate to new places, new faces, and new things.

 

 

On the few rare occasions where Ike has been gone overnight, and Mark seems to know, and not sleep, Becky has come over early in the morning so that I could shower and put myself together for work. And the day he broke his arm she sat with me while he wailed in my arms waiting for the x-rays that would make him wail even more. On the morning of one of Mark’s ear surgeries, Grandpa Mark came to wait with us. They weathered that storm with us, ahead of many to come, just like my parents.

 

 

I call my Mom most every day and ramble on about whatever drama that particular day holds. Screaming fits before bedtime, poor transition to a new therapist, push back from the school system, frustration over foods, health insurance battles, and this week when a parent made a snide remark about Mark’s tantrum behavior, she felt the same intense rage and hurt I did as I struggled to defend my little boy who was confused and in a new classroom for the first time.

 

There are countless stories. My parents and Ike’s parents have been stretched, molded and bonded to this little boy in ways that I couldn’t have ever imagined. Mark knows how important they are too. He lights up when he sees them, eyes sparkling and arms wide open. All four of our parents support us in such beautiful, unique ways. Their selflessness is something that is born from the love of a parent and transformed into that of a grandparent of a special needs child. I know it must be hard to watch us struggle and not be able to tell us confidently that it will be ok. And I know that it’s even more difficult to watch Mark struggle through the everyday things that come easily to most children. Yet just as the lows can be quite low, the highs are remarkable. The next best thing to watching Mark do something new for the very first time is sharing it with our parents. There is no joy like hearing them beam with the same joy that we do when Mark rode his tricycle for the first time or recognized himself in a photograph. So this Mother’s Day, I give thanks to our mothers and fathers who raised us and who are now holding the ropes as we raise their grandchildren.

Respite & Reentry

Mark was diagnosed at the end of January of 2015 and by May of that same year, Ike was on a plane with Mark to California for a visit at the Brain Treatment Center with hopes that a cutting edge magnetic brain treatment would be the ticket. They spent two weeks in southern California at a treatment facility. This was “our” vacation that year, despite the fact that I stayed home with Jillian. The following year we made the trip to Chicago to attend the first ever Family and Professional SCN2a Conference. We spent two days immersed into everything SCN2a, research, meeting SCN2a families, and understanding others challenges. It was a lot. It was overwhelming, and it was our only vacation. So this year when we received an invitation to my cousin’s wedding in Florida, we decided to make it a real one, a true get away, from the kids and from the craziness of our SCN2a/autism/special needs world.

 

I spent the entire week leading up to our trip making meticulous lists about the kids routines, foods, preferences, sleep schedules, songs for everything, videos and photos of lunches packed and teeth brushing and potty routine captured, even creating a “Mark Cheat Sheet” with suggestions of things to do when he melts down for seemingly no reason. My house was cleaner than it been in an embarrassingly long time, and our fridge and pantry were well stocked. Clothes were planned and laid out for the week. Things were as I wish they would be when we are actually here.

 

As we began the 14-hour drive, it took me several hours to just relax and stop worrying about what I forgot to explain. I needed time to acclimate and not feel guilty letting my guard down, eating without feeding someone else and having a conversation without being interrupted.

 

We spent almost a week away from the kids and aside from checking in on them we completely unplugged from everything. No social media. No email. Minimal texting. And no color run site checking on registration numbers. We spent our time talking, eating, visiting with family and just existing without the pressures of rigid routines and communication breakdowns. Even just after five hours in the car, somewhere in North Carolina, I felt ready to return to the kids and parent better. I really didn’t need a ton of time, just a few moments outside of work, parenting and sleeping to clear my head.

One of the many highlights of our trip was our breakfast at the inn where we stayed on our way to Florida. It’s possible that the food was part of what made it so memorable. Best blueberry pancakes ever.  Thank you, Rhett House Inn.  As we looked out on the water of the bed and breakfast in South Carolina, we took our time to talk through our parenting challenges with both kids and came up with sound solutions that were thoughtful and not hurried like usual. I couldn’t wait to go home and hug them.

 

We went to the wedding, made a couple of quick trips to the ocean to breathe in that delicious air and soaked up the quiet that was devoid of our usual household reverberance. We spent time talking about us, and our relationship apart from the kids. Our jobs. This baby. All the small things that we never have time to pass along to each other. We listened to podcasts that we love, like the Moth, and The Way I Heard It, and just shared space together, something that is incredibly hard to do in this phase of life.

 

 

My sister and her boyfriend stayed with us during part of the trip and we rode back home together. Maybe it’s a sibling thing, but Paige makes me laugh harder than anyone else, so much so that my sides ached by the time we got home.I don’t even remember why, but at some point on the drive home, whatever she did kept me from unintelligibly communicating what was so funny to Ike and Jacob. I was relaxed enough to laugh, hard and it felt good.

 

 

At the end of our six days away we returned home, to two very well cared for children, thanks to our parents who took on the burden of getting them where they needed to go while dealing with blown snow, night wakings, structured routines and constant two-hour snow delays. I walked in the door and Mark was in a tired, inconsolable heap on the floor of the dining room. Of course, this didn’t happen at all while we were away, he fell apart right before we got home. Sheepishly I had hoped that he would notice that he hadn’t seen us in a while and run to us, but not today. He was feeling feelings I didn’t and still don’t understand. So I came in and sat on the floor with him, scooping him into my lap and hoping that my embrace would provide some sense of familiar comfort that he may have missed. As the night went on, we were both painfully reminded of what we left behind and what we were reentering. I want to make it clear, however, our life is not miserable, at all.

It is just difficult in a lot of physically, mentally, and emotionally draining ways, yet rewarding and gratifying in ways unimaginable outside of the world of special needs.

For the first time in two years, by taking our vacation, we both took off the heavy yoke on our shoulders for a few days, and somewhat successfully forgot about the gravity of its weight. And when we returned and the yoke was replaced, it was even heavier than when we left. We had grown used to the pressure and the weight, and having it gone, and then returned without gradually working up to it, was burdensome.

 

Without skipping a beat I was back to emailing our neurologist with concerns about Mark’s night waking and potential connection to seizure activity. I was launched back into the decision about Mark’s schooling for the summer and fall. I attended an advisory committee meeting at the board of education, reminding me how terrified I am for Mark to enter public school, and the next day took Mark to a new provider for a speech evaluation. We began trialing a new probiotic to help with the bacterial overgrowth in Mark’s stomach to help end his relentless diarrhea. And we began our quest to find funding for a fence for our yard because it’s getting warmer outside and Mark is getting stronger and faster. And I tormented myself by checking our color run registrations and frantically trying to think of ways to get more runners interested. All the while we were both trying to catch up from being out of work for a week, drowning in email and trying to pull it all together without falling asleep at our desks.

 

It was a tough week, a vivid reminder of what our life is like and a complete smack in the face after the blissfully carefree days we had away from it all.

 

We needed the time. We needed to sleep, time to reconnect, to be reminded of what life is like away from the chaos, and an opportunity to miss that same chaos back at home.

 

And then Saturday night happened. Mark sat in my chair at my desk, looked at my desktop background of our family picture, pointed to himself and exclaimed, “that’s me!”.  Ike stopped what he was doing and stared in disbelief at the back of his head as he continued to point and say “me!” and then point to Ike in the picture and say  “big!”. Pointing is new. Speaking is scarce. He’s worked on photo recognition for six months, and his own picture was the last for him to recognize, and certainly he’s never recognized it out of context of school or ABA.  So this was completely out of character and the blue. And there it was. Why we do what we do. Every last struggle is worth it. Our sweet boy is in there.

 

We’re thankful for the chance to unplug but we are also equally as thankful that we are headed into week three of our return, our callouses are beginning to reform, toughened up from the weeks before and ready to do battle once again knowing that we are fighting for a little boy who, for a moment, could tell us that he recognized himself in a photograph.

 

Ike wasn’t able to get the “that’s me!” on video, but he got a few “me’s” and a “big!”

No Illusions

I can remember sitting alone in the rocking chair in Mark’s room in the dark as I spoke to a friend about Mark’s diagnosis and what it meant for our family. The final thing I lamented over was not having any more children due to the magnitude of Mark’s care. She didn’t say anything directly to address that statement but just echoed that she understood my grieving. I took her silence as confirmation that adding to our family was probably ill-advised.

Time went on and the sting of the initial diagnosis wore off but my desire to grow our family didn’t. The timing, however, never seemed right. There were too many hurdles. Insurance problems. Medical testing. Rigorous therapy schedules. Childcare. Figuring out how to get our current two children in opposite directions while working full time was our biggest mountain. 

Even still, I began to get more serious about entertaining the idea of a third child. The reality of it scared yet excited me at the same time. I watched families with multiple children and especially those with special needs. A family who Ike grew up with have a child with a severe disability and then went on to have three more children. Their kids are older now and fight over who will take care of their oldest brother when their parents pass away. That was it. I wanted that. I wanted another sibling for Jillian and for Mark. To be an example for him, to learn alongside him and ahead of him, and to help Jillian care for him when we couldn’t. That thought makes me suck in a deep breath as my eyes fill with tears, but I know it’s all part of our reality. 

And selfishly, I felt robbed of those beautiful milestones with Mark. The firsts. Walking, talking, all the things babies do in the first, second and third years. The ability to enjoy a toddler without worry over their development. And yet I know what I know now. Everything isn’t always fine, bad news is a real possibility and not every baby is born healthy. Yet I wanted another chance to savor those moments. A do-over. And I felt sheepish for wanting that and for wanting another. Irresponsible, reckless, and careless; all things I’ve never been. Yet despite those feelings, the desire for another baby didn’t go away. I would often say, “it doesn’t make any sense, our life is nuts and I want to add an infant?” But I did. And eventually, Ike did too. He was certainly less enthusiastic but he was open to the possibility.  

And so after my surgery in May we began trying. And after several months I was fully convinced that it wasn’t going to happen. We were fortunate enough to get pregnant on the first try with Jillian and Mark, so this was not normal for us. I was older now, and perhaps that phase of my life was over. So we decided to give it a rest. I dealt with bronchitis and just felt defeated, in more ways than one. Then one morning I felt weird. I knew this weird. I grabbed a test and it lit up right away. My heart began beating and terror set in. What had we done? We had things sort of under control. A routine, a rhythm, something that helped us make sense of our world. And now it was all about to change. 

And I was terrified to tell anyone. Would this pregnancy announcement be met with “oh no!” “I’m so sorry!” And “oh wow, did you mean for that to happen?” Immediately I doubted my abilities as a mom, a person and as a decision maker. And in the throws of nausea, fatigue and extreme sensitivity to smell I really thought, “what have I done?” One night, I could barely get myself off the couch and Mark grabbed my hand and thrust his little dump truck at me. He was clearly frustrated but I couldn’t figure out why. The frustration lead to crying and a tantrum. I was miserable, overwhelmed and frightened by the realization that I will be adding an infant to this insanity. But never the less, God is slowly bringing about peace, especially as nausea lifts, and reminding me that I’m not alone and He created this little person in me, who has a purpose that’s greater than me or anything I could even fathom. 

And as for this little person. For the first time in all of my pregnancies, I am aware of the magnitude of what it means to bring a child into this world. I have no expectations or plans. I have to be open to whatever is in store, good or bad. Will they have a terminal illness? Begin seizing at birth? Not make it past their 2nd birthday? All harsh realities to which we’ve been introduced. There’s a one percent chance of having another child with SCN2a and we pray that this time, unlike the last, the odds will be in our favor. 

I have no illusions that this will be easy, our attention will be divided and more will be added to our plate. I have never felt more anxious. What if this is a repeat of the last? Will we be strong enough to care for two special needs children? I have a couple of dear friends who are pregnant while I am, and I wonder, will I cry after their babies birthday parties like I have before because their babies were doing what they were supposed to and mine wasn’t?

I often hear this common reply at baby showers when asked about whether an expectant mom wants a boy or a girl, “I don’t care, as long as the baby’s healthy”. Those words have never been heavier on my heart. So I pray that this little one will be healthy and free from the ravages of a rare genetic disease. And if they’re not healthy, I pray that God will grow us, stretch us and mold us to love this one just the way He moved and strengthened us to love Jillian and Mark the way we do. 

The Elephant in Our Room – Obamacare

View More: http://crp.pass.us/mark-and-ben

My son Mark was diagnosed with autism on January 27th, 2015. We were applauded for recognizing the signs and seeking an early assessment. The developmental pediatrician at Kennedy Krieger Institute in Baltimore, MD gave us a list of therapies and interventions that have been proven effective in helping children with autism. I quickly began searching for reputable providers to begin services and as part of that research I called our insurance company to make sure that Mark was covered. My husband and I both worked for employers that provided health insurance and our health care was provided through my employer. I called the number on the back of our insurance card and after a 30 minute phone call, I felt like the wind had been knocked out of me. They informed me that I work for an employer with a self-funded plan. They did not provide habilitative coverage. I learned that when a child doesn’t have skills to begin with, such as the case with my son, the services needed are not rehabilitative, they are instead habilitative. These services are likely not covered because they are more expensive and long lasting, costing the company much more money. Because my employer has a plan that they self-fund, they are not subject to the state of Maryland mandate that requires coverage of habilitative services. This meant that in home therapy and intensive speech therapy, both of which were highly recommended for Mark, were off the table.

 

I then learned that in our state, there’s an autism waiver that would pay for these services but there’s a nine-year long waiting list. Mark would be 11 before he would potentially benefit. And our local school system has a parent training model where they only provide limited visits, once or twice per month with the intention of training parents how to provide intervention for their own children.

 

Kennedy Krieger’s billing office gave me a packet of information that has helped other parents lobby to have their children’s services covered by their employers. Immediately I contacted my Human Resources department who put me in touch with our insurance representative. He confirmed that there was no budging on the habilitative service coverage and directed me back to HR. I called and emailed until finally they set up a call with the broker of their plan and had a closed meeting, for which I was not permitted to attend. During this call, it was determined that no changes were to be made, regardless of my appeal.

 

Head spinning, I began desperately reaching out to my friends with children on the autism spectrum. I contacted a veteran autism mother who very matter of factly told me, “this is what you are going to do, you’re going to purchase a plan through Obamacare”. I knew nothing about government sponsored healthcare as I was always employed and covered by my employer’s plan. I didn’t understand the market or the exchange, or anything about how it worked but all of that changed when this became my only viable option to make sure that my son’s therapy was covered.

 

After several hours of phone calls with representatives through the Maryland Healthcare Exchange, as well as the assistance from our local health department and a local insurance broker, they were able to help me make my case that my employer’s plan was not providing adequate coverage. They allowed me to shop the plans on the exchange outside of the open enrollment period. I purchased the most comprehensive, and expensive plan I could find that would cover all of the speech, occupational and physical therapy he needed. His services started soon after I received the insurance card, which was about five months from the time he was diagnosed.

 

Since this time, Mark has made progress, learning to walk, feed himself, make eye contact, point, request items with gesturing, match colors, shapes, recognize and distinguish family member’s photos and follow basic instructions. At the time of his diagnosis, he spent 80% of his time spinning in circles on the floor, avoiding eye contact, and staring at flashing lights.

 

Mark is far from neurotypical, but his behavior has improved and he has been able to gain functional skills. The pressure that was lifted when therapists began coming into our home to provide services was priceless. I could focus on being his mother, and caring for both of my children, instead of being the therapist I knew he needed and we couldn’t afford.

 

We didn’t qualify for government assistance or receive help to pay for the high premium, but that was ok with me because I knew that there was no way we could have afforded the care he needed without insurance. Without this coverage, the services my son receives would cost us $10,000 per month.

 

I wanted to share our story because I have read some rather hurtful and inaccurate statements and comments about the Affordable Care Act and those that it insures. I am not mooching off of the system. I went to college, graduate school and have been employed my entire working life. If the Affordable Care Act was not an option for us, I would have been failed by the system that allows a large employer to deny coverage for an expensive diagnosis. Receiving the news that our child has autism was painful enough, but the thought of not being able to get him the care he needs to be as functional as possible is excruciating.  

 

Please share our story. Contact your local representatives and demand that they reconsider completely dismantling the Affordable Care Act without at least considering the millions of people that have benefited from its existence. This is only one story, but I’m sure there are others out there like us.

 

View More: http://crp.pass.us/auldridge-family-fall-2016

My Resolve

My sister stopped by on New Year’s Eve with homemade pretzels, a Snap Chat tutorial for her old lady sister and some passing comments about 2016, looking forward to 2017 being better.

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I thought back over my year and whether I would sum it up as good or bad. Immediately I thought about my mom’s cancer treatments, the summer of Mark’s broken arm and his new intense fear of doctors, and the loss of the two children with SCN2a. Realities of my fears; potentially losing my mom, the increasing difficulty of parenting a child with special needs, and the ultimate fear of my son’s life being shortened. Because of it, I’ve acquired more gray hair, my worry lines have deepened and I’ve gained more of a seriousness to my demeanor.

 

As Mark was curled up in my desk chair watching slideshows of photos on my computer this afternoon I caught a glimpse of a picture from a few years ago that lives in the “before” category, a separate space that I’ve mentally designated to contain the memories of a time when I didn’t know what was coming, my life wasn’t turned upside down and I didn’t wake up in the middle of the night alert, mind racing, very aware of all that weighs on me. In this photo, I looked healthy and clearly less stressed, because I didn’t know then what I know now. The little boy I was holding was missing milestones and it wasn’t just because he was a boy, and boys develop at a slower pace.  I often yearn to go back to a simpler time, when my worries were so much less significant; so much so that I can’t even remember what consumed my concern.

 

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And now my fears are in layers and they come in waves. I lay awake at night researching schools on my phone, terrified that Mark will attend a school where he’s ostracized, secluded and rejected. I imagine having to sell the house we built as our forever home in pursuit of better education and services. I even imagine the possibility of homeschooling, something I never considered. I lose track of him for a moment in our house and my heart skips a literal beat as I entertain the possibility that he may have figured out how to open an exterior door. And on mornings where he sleeps later, I worry that I will find him seizing in his room. The failed attempts at learning, the loss of language, and dreadfully slow progress makes me take a deep breath that I wish would lighten the weight I feel but doesn’t. The heaviness of discouragement coupled with these fears leaves me feeling physically drained, emotionally tapped and on edge.

 

I constantly reevaluate, rethink, and criticize what I’m doing, and what I’m not doing. I think about Mark’s team of doctors, and whether I should I try a new one. Whether to seek out that quarterback that I’ve always wanted, someone to coordinate his care, to think about him as a whole person, rather than seeing his body systems in isolation, to help to reevaluate therapeutic approaches and diet, and for goodness sake, know something about SCN2A, and take the pressure off of me to unravel the tangles. I constantly second guess my choice to send him to a speech program that requires a three hour round trip four days per week. I wish for time to reorganize and renovate my basement to be the sensory play gym that I know he needs. I beat myself up over the time I don’t spend trialing new foods or not making everything from scratch, my lack of follow through with using his communication binder and the things I let slip through the cracks, like getting his new insurance card to the private therapy company in a timely manner.

 

2015 was the year of scrambling. I spent it reading every book on autism I could get my hands on, trying every therapy within the realm of possibility that looked remotely promising and talking to every parent I knew with a child on the spectrum, and at the end of the year, connecting with parents with children with his specific SCN2a mutation. I fought hard that year for his insurance, for his therapy and for a support network that could help us manage the chaos. 2016 was the year of seeing what I fought so hard for fall into place and anxiously awaiting the resulting progress. The year has concluded with the sobering reality that his diet, supplements, therapy and my efforts to move him forward aren’t producing the results that I had anticipated. He absolutely has made progress, but it’s hard to decipher what to attribute it to and it’s even more difficult to keep a faithful outlook when the progress he does make is gone quicker than it came. 

 

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So now in 2017 I find myself regrouping and taking stock of where we are, and digging deeper to see if I can work smarter and not harder. Despite feeling beat down by the never ending battles I know that Mark deserves the best, my best. He deserves a mom who will keep an eye on the ball, not give up on him, and fight with every fiber of my being for everything he needs to be safe and supported. And I will shoot for the moon, I will work hard to learn even more about SCN2A, I will work to double our profit at this year’s color run, and we will take one step closer to a cure.  And so perhaps these are my resolutions for the new year.

 

View More: http://crp.pass.us/auldridge-family-fall-2016

 

This past year may have aged me a bit, but may I gain wisdom from the mistakes, rejoice in even the smallest of victories, and may the fears that exist in my world serve only to fuel my perseverance and determination. We may lose words, the milestones may never come, but I resolve to keep my chin up and my outlook bright, because just look at that face. His smile says it all, without the words. 

 

View More: http://crp.pass.us/auldridge-family-fall-2016

Like Leo

Last Christmas I bought a book for Jillian and Mark titled, “Leo the Late Bloomer”, a story about a little tiger that wasn’t developing as he should, no talking, no drawing, and namely no blooming. Eventually Leo blooms, emerging as a talking, coloring, playful tiger. I think to some degree when we hear words like “developmentally delayed” we think that the development will come and our child will bloom, it will just be late. And as time marches on, I begin to understand what a friend said about the cruelty of that term. We hold our breath for the firsts that we think are coming but never do.

leo-the-late-bloomerI think about the baby calendar I had for both kids that required stickers to be placed on the specific dates that “firsts” happened. I still think about the large quantity of stickers left in the back of Mark’s calendar, unmatched to dates. I think about the child development books I have shoved into a box in the basement and the emails I unsubscribed from that reminded me of what my child “should” be doing. And I try really hard not to pay attention to what other children are doing, but as Mark gets older the difference becomes ever more pronounced. When he was two, it was acceptable for him to be nonverbal as many children are late talkers, and even at three, this didn’t seem totally out of the realm of possibility, but we are now rounding the corner to four and Mark is almost the same size as Jillian and the difference is becoming increasingly more obvious.

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Oddly enough it has become the most difficult to be around infants and small toddlers, not the children that are Mark’s age. I see young babies point, show joint attention, engage and even speak soft words, and I take a shaky breath realizing that as Mark grows his voice will change and mature, and I won’t be able to hear the tiny, so small voice of a precious little one. I was out with Ike and the kids for dinner at Panera and over Mark’s shoulder, I spotted a mother and father with a toddler that looked to be about 18 months old. As the mother smoothed out the protective plastic covering in front of him and carefully laid out a container of cheerios and his sippy cup, I could see the toddler drinking and eating independently while chattering away to his mom. And as I focus in on the foreground I see Mark primitively grasping his cereal out of my hand, only drinking when I offer him his cup, staring past us and avoiding our gazes. It’s moments like that when make my eyes well up and I am overwhelmed with the sadness of what I wish I had.

Though the initial shock of the diagnoses has faded, the continual mourning of our original hopes and dreams is heavy and burdensome, acceptance of our new reality is sobering, and envisioning the future fills me with trepidation.

Just when I think I’ve arrived at a place of peace and acceptance, something completely small and out of the blue will knock me backward and I feel the intensity of those feelings that I try so hard to push away.

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To drag myself away from the dark corners, I attempt to focus and capture the small positive changes that I am cognizant enough to recognize. And yet even more powerful are the observations that Jillian makes because despite the sometimes hardening of my exterior, she is still pure, filled with enthusiasm and open to new things without the burden of a fortress built around her. Over the weekend I surprised her with decorating her room in Christmas lights complete with her own decorated tree. I’ve never seen her smile so big than when she walked into her room that night. And even more, she wanted her brother to be in there with her. So she came downstairs, gathered paper, crayons, and some books and headed to her room where Mark waited. A few minutes later she came running down the stairs, “Mom! Mom! Mark is coloring all by himself! I didn’t have to hold the crayon or make him do it, he’s doing it!” I ran upstairs, peaked around the door and saw him sitting next to a piece of paper with several scribbles as he played with a toy house seated next to her little tree. Jilli looked at me and excitedly said, “he’s like Leo!”

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Often my vision is clouded by the need to protect myself from continual disappointment, but thankfully God gave us Jillian, who can still see very clearly real greatness before her, and celebrate without pessimism, the milestones that are so obviously being reached. So this next year, I will resolve to see Mark in the same light as Jillian, with a hopeful, open heart, willing to embrace where he is and celebrate the developments no matter how small, because we have seen that God is incredibly mighty in those moments.

 

Rhythms of Grace

Last fall I sat in the waiting room of a doctor’s office holding a copy of my ultrasound. To my left and right were young couples gushing over their little fetuses on the sonogram pictures. I was holding a photo of my fibroid friend who had decided to set up shop in my uterine lining and I was waiting to talk to a doctor about my surgical options. As the mamas-to-be that surrounded me all discussed their current sleep deprivation, I thought of my own. Theirs will end eventually when their sweet little ones begin sleeping through the night and I sat there with the stark realization that I may never have good sleep given Mark’s general disinterest in sleeping. I felt the dread of comparison and anger began to overwhelm me.

Several weeks earlier my mom had been diagnosed with breast cancer, and just a month before that our son received the rare genetic diagnosis. The reality I faced was suffocating and terrifying. My dad passed away when I was three years old leaving my mom alone to raise me by herself. We have a special bond, she’s my person. So two of the most precious people in the world to me were facing big medical challenges and the helplessness was crippling.

I felt like my little medical blip on the radar was just more salt in the wound. I cried that day in the waiting room and felt ridiculous. This was nothing compared to anything else happening to my people. I barely cried since this entire storm of doctor’s appointments began the year before with Mark. And when Mom called me at work to tell me that she had cancer, I was just stunned and dumbfounded. This wasn’t supposed to happen. My dad passing away when I was little was my turn with tragedy, I wasn’t supposed to get another one. And for this to happen to her was such a blow. Mom walked with Dad through his suffering and his eventual passing. In my mind, a cancer diagnosis was the worst thing that could happen to her. Not now. This was not good timing. I suppose there’s never an opportune time for cancer but now seemed worse. I was trying really hard to be brave for my family but this day I cried because I was angry. So incredibly angry about many things, but mostly angry with God.

I’m fully aware that life is not devoid of suffering, and that in suffering we are to draw nearer to the Lord, but that is absolutely not what I felt like doing.

I tried to see the silver lining. I tried to think about how I could use this season to be a blessing to others, but those thoughts and feelings felt fake and forced.

I didn’t want to hear that everything happened for a reason. Or that someone’s neighbor or friend had cancer and they survived or didn’t. And most people didn’t know what to tell me with regard to Mark. It was a rare genetic disease without a name. Nobody’s second cousin had dealt with that.

And I completely know that I am awfulizing, which is when we lament over all of the terrible things happening and then neglect to recognize the positive. I get it. It’s just where I lived for quite some time. How could the train go off the rails this badly?

And then in November, we faced a new, weird challenge. Radon.

At some point that fall, I thought that we should check our house for radon. Seems random I know. My boss had recently discovered that there was a problem in his home so I thought it would probably be wise to investigate the possibility in ours. After sending away a test we purchased from Amazon, we received the results. Our radon level was 413. As a point of reference anything above two is bad. Two. Not 200, two. The chart on the results only went up to 100, stating that our risk of lung cancer was exponentially higher if we had anything up to 100. Our level was 413! Thinking it was a mistake, I called the First Alert company. Nope. It was so high, they tested it several more times to be sure.

Evidently, our house was built on a large bed of shale, which is essentially uranium and the source of radon. Super. So just like any other problem, I dove in head first to figure out what person we could get to our house ASAP to fix it. However, I quickly learned that there are only a handful of people in the state that mitigate radon, and the person who actually answered his phone couldn’t come to our house until the end of the year but did manage to share that in 25 years of doing this, he had only ever had one other home as bad as ours. Well, you know, we go big or go home!

So if we’re keeping track for awfulizing purposes, we had the following going on here:

  • Son with rare genetic condition with no name or prognosis with new fear of seizures
  • Mom with aggressive form of breast cancer
  • Imminent surgery for me
  • Home built on natural toxic waste dump, with our lung cancer risk being the same as if we all smoked a pack of cigarettes every day

The Nathaniel Ratecliff and the Night Sweats song called S.O.B. played on the radio the morning after our radon problem surfaced. I’m not much of a drinker, and I limit my use of foul language but I heard this song and just starting laughing, so hard that I started crying. I drove to work, cranked the song, and just cried the ugly cry. It was my white flag moment. My “I give, you win”.

Never was it more abundantly clear that I was not in control than at the end of last fall. Control is such a continual struggle for me.

I didn’t even know how to begin unpacking the baggage I was now dragging around. Feeling powerless, many nights I would sit with Mark as we “watched” the music. I would play his songs and he happily sat on my lap, staring at the screen, as I wrote blog posts I never shared. We also watched the videos of the SCN2a children. Mark loved the Rachel Platten songs that accompanied them, and they became some of our theme songs. And slowly over time, I began to realize that my job on this earth is not to solve the problems, any of them really. Instead, it’s to join alongside in the trench. That’s my job. Be there. Be there for the people I love and to teach my children to do the same.

And so I went to Mom’s first chemo. I rode along to Hopkins for the second opinion. And I helped Mom pick out her wig when her hair fell out.

I drove Mark to his therapy appointments, held him during medical procedures and cheered like crazy when he finally figured out something that had been challenging him for months.

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I lived in Jillian’s world of anxiety, trying to make her laugh in a sea of scary things.

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And I threw myself into fundraising events for SCN2a research.

We marched on, we showed up and held each other’s hands. Things, of course, aren’t perfect now. Mom still has a port in her chest for one more treatment. Mark is three and a half and just figured out how to clap. And our basement is torn apart because of the work that Ike performed over the past year to thankfully remedy our “little” radon catastrophe. Yet despite the slow pace of our progress, God has grown me, molded me and shaped me through this season of uncertainty. My anger has dissolved into thankfulness for His grace and goodness in this tough season, and for never abandoning me even when I abandoned Him.

I recently ran across this version of Matthew 11:28-30 (MSG)

28-30 “Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”

 May we continue to hold each other’s hands, as we live freely, and lightly and learn the unforced rhythms of grace.

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