The Messy Middle

I had a doctor’s appointment last month and while waiting for the doctor the medical assistant asked me where I vacationed this summer. I answered that I spent my entire summer sitting in the doorway of the half bathroom waiting for my five year old to pee. In fact, I had gotten quite good at nursing my baby sitting cross legged in front of the toilet while I made sure said five year old didn’t escape. I’m pretty sure the medical assistant was happy that my chart was updated and probably sorry she asked. And just last night Jillian told me about how she had to a write a narrative in school about where she vacationed this summer and felt a little funny since we didn’t go anywhere, or really do anything. Even so, I felt a strong sense of honor that I was helping Mark take one step closer to independence, and it was a personal challenge.

If I could potty train him, then I could do anything, and if I couldn’t, there was no soft place to land.

After a few days of training I found myself on the couch in my therapists office with anxiety through the roof. I gave her a run down of the weekends potty failures and explained that they very much felt like mine. Each time he would have an accident it was my fault. I didn’t get there fast enough, I didn’t time it well enough, I hadn’t trusted my math. I was assigning and assuming blame. Everything is so difficult to teach him. It takes so much repetition, patience and more repetition, and I honestly didn’t feel up to the challenge. I called another autism mama who had been down this very road before and she told me that through this journey I would earn my stripes; and I needed to, for my confidence and sanity.

As the weeks went on, he spent more and more time in underwear, and very slowly the carpet cleaner and disinfectant wipes made their way back into the cabinet. And by the time school was about to start we had successfully reached the goal of trip training. Mark would pee when we took him with no verbal or water prompting and he stayed dry between trips. And his reward? Music! It took us weeks of giving cookies, his sisters off-limits Legos, new books and toys, before we figured out that this precious boy of ours just wanted music. We would play “Hey Ho” by the Lumineers each time that he was successful and it was like Christmas for him.

Eventually I began to ponder and calculate how we could teach him to initiate and communicate his desire to go. We added a PECS card to the door jam of the bathroom with a picture of a toilet and on a few occasions Mark took his therapists hand, grabbed the card, said “go to potty”, and went to the bathroom. We had arrived!

The confidence that I lost over years of fighting and failing to teach him the most basic things was coming back and I felt so proud.

And then a few days before school started Mark fell and broke his arm.

As I was reading the orthopedists notes in the patient portal regarding his office visit, I read the line “due to the patient’s autistic severity I recommend a cast”. Mark’s break wouldn’t typically call for a cast but because he wouldn’t comply with a sling, a cast was the only option, apparently. Autistic severity. All of my confidence was lost and I felt so foolish for thinking that just because Mark began to recognize letters and numbers, that we were somehow escaping the confines of the diagnosis that I hated. I felt silly for celebrating his milestones and upset that in a matter of a five minute visit the doctor concluded that his autism was so severe that we couldn’t discuss less constrictive options. My confidence was shaken and I felt that familiar heartbreak all over again.

And Mark’s confidence must have been rattled too. You wouldn’t think that a broken arm would unravel potty training but it, or the start of school, has. We are now back to going through multiple pairs of underwear, cleaning the floors, and my deep sense of failure has returned. I live and die by Mark’s successes and pitfalls, and this is killing me.

And just as I began to throw myself a pity party, Mark’s stimming behavior has ramped up, and a new tick has been added. He now abruptly yells and accompanies the shout with a head jerk. I see him shaking his head a lot, and the vocal stims are in full force. Or maybe I’m noticing it all more because the words “autistic” and “severe” are reverberating in my head.

His SCN2A diagnosis also looms in the background as I read the age of seizure onset for each new child that is introduced in our online community group. Every new behavior makes me question whether it’s seizure activity. I had a dream last night that Mark was having a seizure and we were racing to the ER. It was so real and this morning I felt a sense of somberness knowing that everything could change just that quickly. His regression of potty skills make that worry even more real and I begin to imagine how very different our life would be if seizure control became the new goal.

On Friday night I found myself slumped over my phone at the dining room table watching videos on You Tube of different types of seizures. I was Googling. And I was worrying.

A question that my therapist asked me sometime in the middle of the summer of potty was, “what do you need to have peace?” And I’m still puzzled and stumped by this question, because I am far from having peace as I generally feel pretty tortured.

I had hoped to return to blogging at the start of fall with a happy report that we had done it; we had accomplished the seemingly insurmountable goal of toilet training and we were ready to wave from the other side, but instead we are in the messy, painful middle. And maybe it’s helpful for others to see what the middle looks like as we are often too quick to share where we started and where we landed.

So I’m waving hello, sending a post card from potty boot camp, and hoping to arrive home eventually.

The Box

As I thumb through the sea of high school graduation photos in my newsfeed I see all of the shiny, happy faces proudly holding their diplomas, and I can’t help but be reminded of the box we had to check a couple of weeks ago. In the middle of a season of celebration we’ve been grappling with a choice that most parents aren’t faced with at this point.

If you know and love a special needs family you’ve probably heard them groan about IEP meetings. And there’s reason for that. Though the intention of these little get togethers with the school system are to touch base as a team to develop goals, evaluate progress and make decisions, they often end up being an opportunity for intimidation and a power struggle further punctuating the special needs life with an emotional pummeling.

We had ours last month. Mark is finishing pre-k and so this meeting was intended to determine where he will go to kindergarten, but we knew that ultimately we would have to decide whether or not he will pursue a high school diploma. He just turned five and we are tasked with deciphering if he will be capable of earning one. In our county, in our state, this is the decision and this is when it happens.

I didn’t realize what I was choosing until it finally clicked during the winter when I made the seemingly unusual request to visit schools in the county to see the kindergarten programming options available.

According to IDEA, the LRE, Least Restrictive Environment, Mark’s home school, where he is districted to go, must first be considered. We visited. We talked with the principal and after several factors, determined that this was not the best fit.

We visited a school that had an autism program that would allow children the opportunity to pursue a high school diploma but with extra supports. Hearing that this existed I had determined that this would be our plan all along, but once again we ruled this out once we visited. As Ike and I peered into the classrooms we could see that children in this program were sent into regular classrooms with minimal support, and we realized that Mark would not be capable of doing that or being assessed like the other children. This felt like a giant leap.

So the next program we considered was a Life Skills class. This is where children with special needs are in a self-contained classroom with a special educator and typically two to three paraprofessionals tasked with helping the children attend to the tasks in the classroom and work individually. It’s a very supportive environment that, in addition to an academic curriculum, allows children the opportunity to work toward non academic goals like self care, at their own pace without being required to take state administered assessments. This program would lead students down the path to a certificate of attendance, not a diploma. We toured two schools that had these programs and felt that this would most likely be the place that would best support Mark.

The administration and staff reassured us multiple times that every year the choice to pursue a certificate or diploma would be revisited making the decision seem less final. This eased my mind and allowed me to feel comfortable with our mental choice of Life Skills, and then it hit me.

If a child starts out in a Life Skills program not following regular kindergarten curriculum, the challenge to switch over to the pursuit of a high school diploma in the future becomes an uphill battle. Once that departure happens the odds of an already developmentally delayed student kicking it into high gear and making up lost ground seem quite slim. This was confirmed when we visited one of the Life Skills classrooms and I posed a question to the staff about how often they’ve seen a switch from certificate to diploma and the answer was not many, if any at all.

The potential lack of diploma is an element that comes into play with my job, making the decision that much more layered, which gave me even more reason to pause.

My job as a college disability advisor has allowed me the chance to meet with students with varying diagnoses, including autism.

I’ve spoken with the parents of my students with autism and they have shared their paths with me. They chose to mainstream their children because these specialized programs didn’t exist. They pushed their children in with regular kids and though it was challenging their children met the requirements with the appropriate classroom support. They made a ton of progress, and the body of research supports this choice. Children with special needs, given the opportunity to be exposed and learn alongside their peers without special needs are more successful compared to those in self contained classrooms.

At work in April we showed the film “Deej”, the story of a nonverbal student with autism who not only graduated from high school with his diploma but went on to earn his college degree. Watching this documentary that showed a boy with no expressive language, with vocal stims, ticks and obvious motor challenges opened my eyes to the enormous potential of students with autism. Deej learned to communicate with assistive technology that provided him the ability to express through selecting letters. He showed teachers that he could learn, he could read and that he was an incredibly intelligent, articulate person.

Upon seeing the film, I was inspired. I purchased it for Ike watch. I purchased it for a fellow autism Mom to watch. And then I emailed the film producer asking additional questions. How did his parents know he could read? How did they find the right assistive technology to help him unlock his expressive abilities? When? How long? All the questions. The producer emailed me back promptly and copied Deej, explaining that he would be the best person to respond to my barrage of questions. So Deej and I have emailing back and forth. Like my other students with autism, he was mainstreamed, and with special support, he accessed the curriculum and demonstrated that he was not only capable of achieving a diploma but accepted into his first choice college.

Between my nonverbal email pen pal, parents of my students, teachers and service providers, and the IEP team amassed to help influence this big decision, we felt really torn.

If someone would have asked us six months ago if we thought Mark was capable of the rigor of general education, I would have said no, but within the last six months Mark has surprised us. He’s blurting out sentences, identifying numbers, performing tasks and following basic directions, but there’s still so much he can’t do, and so far he still has to go.

Ike wisely pointed out, we have to choose what’s best for him right now, with the information we are given and not focus so much on where he may or may not be in 13 years.

So here we are. The box has been checked. He’s off to Kindergarten in the fall, Life Skills, certificate track. As I type out these thoughts on my phone, I’m watching him make sure all of the doors are open in the LEGO structures that Jillian has built. He’s still obsessed with doors, ensuring that they are all left wide open. Ironically, that’s the very thing I’m trying to do; leave the door open for potential, possibility, and the chance to be one of those happy faces holding a diploma. And perhaps he’ll surprise us, like he often does.

Be Gentle

A few weeks ago I received a paper in Mark’s preschool folder with two of the most anxiety provoking words for a special needs parent, field trip. Mark’s class would be visiting the theater on campus where I work for a kinder concert. I couldn’t imagine sending him anywhere outside of his routine without one of us going along so I requested to meet them at the theater; after all he was literally in the building next to my office. So when I found myself waiting for the bus inside the lobby a pit of worry set in and I quickly questioned my chaperoning choice. Mark is getting larger and more difficult to handle, and I’m a very petite person. Then a deep feeling of sadness took over as I began to think about how my presence doesn’t seem to really fix anything. Unlike when the baby falls and quickly recovers at the sight of my face, for Mark, seeing me may be a novelty for a moment but it doesn’t appear to change much.

Mark did better than I anticipated, adjusting to the new setting as we followed along to our seats in the theater, but then when the expectation was to remain there and be quiet, it was clear that I had a fight on my hands. Just as soon as I began counting the minutes until we could leave I realized that I needed to change his diaper. Fully aware that there were no places to change him in the building that wouldn’t freak him out I took his hand and lead him to my SUV in the staff parking lot. It was cold, raining and I had very little space in the back hatch area thanks to the boxes of clothing that needed to be dropped off at Good Will.

He cried, we wrestled and I prayed that none of my co workers would pull in next to me to see me struggle.

Once I finished the diaper change we headed back into the building and I prayed that he wouldn’t grow upset once he realized we weren’t leaving. I just kept telling him that once we got inside we could listen to music. We made it back into our respective row and our previous physical altercation resumed as I fought to keep him from escaping. At first he was subtle, pretending to cuddle in my lap in an attempt to spin into the aisle, and then he resorted to trying to body slam me. My jaw and nose absorbed some of the force and then I looked up and realized that an entire row of kindergartners and their teachers were staring at us. Mark’s vocal stims, loud noises and attempts to overtake his mother not surprisingly distracted them from the musical selection on stage. I also started to worry about not being able to handle him in the presence of his teacher and assistants. They handle him everyday and here is his mom unable to do so. Feeling the familiar sense of anxiety and dread, I decided to practice my newly discovered self talk. I began to silently say “I know this is really hard, don’t worry about people staring, just continue to love on him. You’ll both be OK, and this will pass soon.” I felt myself relax and my silent internal monologue was right. With the help of showing Mark photos of his little brother and telling him to listen to the music, I kept him in our row and it was over relatively quickly.

A few days before the field trip I listened to a Ted Talk by Kristin Neff who explained that she was a self compassion evangelist, spreading the good news of treating ourselves kindly. Being nice to yourself probably seems like a given but for me it was foreign. And I didn’t realize just how foreign until the end of her Ted Talk when she told the story of her own autistic child throwing a wicked tantrum on a transatlantic flight. Knowing that there wasn’t much she could do to stop it mid air, she paused, focused, placed a hand over her heart and in a sweet, compassionate voice said to herself “This is so hard right now… I’m so sorry you have to deal with this, but I’m here for you.” Upon hearing such inward focused gentleness the tears that I’ve held back for months burned my eyes. And it was in that moment and during the subsequent therapy session when I realized just how awful I had been to myself.

My therapist had asked me to go deeper, and to think about what was beneath the fears that I had unpacked. It took me some time but I realized that though I feared that my children would die, even more so I feared that it would be my fault. I would be responsible. I truly believed that every challenge we faced was my fault.

And it was this assignment of blame that plagued me and lead to the constant berating that has become the norm in my head. Common inner sayings would be,

“Why are you so tired? Now that you put the kids to bed go back downstairs and clean the kids playroom. You know that Mark thrives in a clean space. What if he or the baby chokes on a Barbie shoe?”

“Mark needs more variety in his diet. His restricted eating will only worsen if you don’t figure out how to work in new foods.”

“Mark isn’t talking because you don’t work with him enough.”

A lazy, incompetent failure is the message I had been sending myself on a daily basis for quite some time and deep down I had also adopted the idea that I was ultimately to blame for Mark’s diagnosis.

Clearly I have some work to do. Blame doesn’t need to be assigned to everything and I need to work through why I assume responsibility for it all.

So when I was introduced to the idea of speaking so sweetly to myself I ran toward it with open arms because I had been so parched for kindness that I forgot what it was like to be treated this way. So in that theater, wrestling my sweet boy, I decided to make a small choice to be loving and gentle to myself. And in doing so, I made it through a challenging moment and was able to see that I didn’t fail Mark, and in fact I may have actually been comforting to him.

Later that evening I said to him “Mark, it was so special for Mommy to go with you today.” And surprisingly he responded and said “special”.

He’s pretty special, and I’m trying to work toward embracing that his mom might be too.

The Weeds

When I was 14 I joined the color guard in our high school marching band. Not the twirling flags or rifles color guard, no no, the people that hold the banner and the American and state flags. I point this out because I was pretty confident about my incapability of doing anything more than that. After a few months of time spent with upper class men in the color guard who felt the need to put me in my place as a freshmen [read bullying], I had enough. I went to the band director and asked if I could be placed on an instrument. He needed French horns so I was switched into concert band and was handed this complicated beast of an instrument. I signed up for private lessons. I practiced and practiced, and by the time I was a junior I was first chair and selected for All County (big deal for band folks). I gained control over a completely powerless situation, and thus a coping mechanism was born.

The same would happen again and again as I got older. I would take seemingly challenging scenarios and fight my way out of and over them. Hard work, perseverance and determination paid off, every time. That equation served me well in my education and career. And then when Mark was diagnosed with autism and SCN2A I dug my heels in, and set into motion pummeling away at it like usual.

Eight months into Mark’s diagnosis, I was helping to plan a color run to raise money for research. I did a restaurant fundraiser, a quarter auction, a paint night, and then another color run the following year, and again this year. I threw myself into fundraising, advocating and learning everything I possibly could about autism and SCN2A.  I read books, studies, listened to podcasts and immersed myself in the special needs world. I started this blog. I wrote and shared, and poured myself into understanding insurance, therapies and biomedical treatment. Just like all the times before, I was going to educate, work and dig my way out of this rather troubling and unsettling situation. But this time it didn’t work.

Mark is not cured. He still has autism. And I’m in rough shape. My resting state has become that of dread and anxiety. I replay some of Mark’s scarier moments in my head repeatedly. I jump when my phone buzzes with a text or voicemail and I worry endlessly over the possibility of seizures. I fully realize that adding another baby to our family and the subsequent sleep deprivation has magnified these feelings but they are valid none the less, and my current reality.

I struggle to really engage at work. When I hear my colleagues chatting about their plans for a holiday or weekend, I can’t relate. I’m held prisoner in our home because being out in the the world is so much harder with a child like Mark. An unexpected errand or a stop at a foreign gas station will result in a head banging tantrum requiring me to hold onto Mark’s face and yell above the screaming “first gas, then home!”

I don’t watch any popular TV shows, go to the movies or have a clue about pop culture. I spend any spare minutes I have intensely focused on whatever obstacle is in front of us. This year after Mark entered pre-k I saw the issues within special education and I got to work advocating for improvement. (See the theme? Push, push, push.)

I’m a bad friend. I’ve forgotten birthdays, important things and anniversaries. I even forget to ask how other people are doing because I’m so inwardly focused. And I’ve fallen off the grid for weeks or months at a time, surfacing only to post on social media in an attempt to avoid complete isolation.

I have PTSD. And I don’t say this lightly. It’s true. We’ve been through a number of traumas and I’m stuck in the cycle of grief. I’m not in denial of our situation but I haven’t fully embraced its magnitude. I haven’t accepted that Mark will always be different; that our family will always look different. Our normal will not be the normal of my friends families. When people say things like “they’re only little for so long” or “enjoy these years, they’ll grow up before you know it”, anger bubbles up inside of me because Mark will be our eternal little boy and most likely won’t leave us.  I fully believe that research is speeding to a cure, but will it be too late for Mark? Will he be too old for it to reverse his neurological trajectory? It pains me to type those words and I don’t want to believe them. I have always equated acceptance with defeat and loss of hope and I haven’t been able to go there. Acceptance meant that I lost the game I was trying so hard to win.

I found myself sitting on a couch across from a therapist a few weeks ago after I reached a point where I determined that I needed reinforcements. She explained that hope and acceptance were in two different buckets. I explained how I felt that they were in direct opposition to one another. And then I told her how I felt about God. After I finished sharing how I felt like God was trying to repeatedly teach me something that I wasn’t getting, that prayer felt useless because He had ordained all of these troubling things and how I felt devoid of blessings, she looked at me and said that if she felt the way I did about God, she would be an atheist. In that moment I realized how incredibly lost I was.

I’ve mentioned before that I’m not a crier. I realize now that it’s because I’ve numbed myself. And what I didn’t realize was that I not only numbed the fear and sadness I have about Mark’s diagnosis but I also numbed peace, joy and happiness and haven’t had access to those feelings for quite some time.

I see the constant vacant look on Mark’s face and if I let myself really focus on that, and wish for him to come back to me, a knot forms in my throat and as quickly as I let myself slip into that place of sadness, I shut it down.

Sometimes I pretend for a brief second that Mark is cured. I imagine him engaged, talking, excitedly pointing to something, with an intense desire to share it with us. I envision Jillian interacting with him in a normal way. Luke and Mark playing together, and most notably I can actually feel myself relax. My shoulders come down from my ears and a feeling of hope and anticipation of our future as a family floods my senses. And as I feel the warmth of peace wash over me, I abruptly end the fantasy, bottle it up and shove the sensations away, to be replaced by fear, trepidation and hopelessness. I realize now that I’ve been placing my hope and ability to be happy upon Mark being cured. For many of us, we delay happiness until we get things like a new job, or house, or go on vacation, but I’ve delayed it upon something a lot further out of reach and potentially years into the future, if it all.

And then the feelings of guilt creep in. I feel guilty for feeling sad about Mark. He’s still alive. I’ve received the gift of hearing his little voice say a few choice words. He’s able to walk, not in pain (that I know of) and doesn’t require much complex medical support, so this should mean that I’m thankful, right? But he’s incredibly mobile, has no regard for his personal safety and has just enough awareness to be dangerous. He has angry outbursts when he can’t communicate effectively which results in gut wrenching tantrums and screaming. And most recently we’ve become acquainted with Pica as he’s been eating non-edibles he finds around our house. So then the guilt is replaced by fear of how much harder our life will be as a he grows and becomes too large to manhandle. And thus the endless cycle of guilt, fear and anger ripples through me.

Obviously I can’t outsmart this situation. I can’t crush it with determination and grit. What I have to do is much harder. I have to be still and know that God will fight for me; not necessarily for the cure that I want and crave, but fight for me to make it out of the weeds; for me to see the light in the distance, and embrace what I’ve been given. He has abundantly blessed us, and I often can’t see it because for every video I share of Mark saying a word, there are hours of lining objects and shrieking while he paces back and forth across the dinning room pushing a Doc McStuffins cart, looking past us focused on something unknown in the distance. And then there’s the several failed attempts at potty training and for the past eight weeks he has oscillated between vomiting and diarrhea, leaving us completely baffled. I have gotten stuck in the mire and I can’t seem to pull myself out.

There’s a song that became my anthem when we started our journey. I would sit at my desk while I watched Mark fixate on the knots in our hardwood floors while he spun in circles. Coldplay’s “Fix You” would boom through the house…

When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse

When the tears come streaming down your face
‘Cause you lose something you can’t replace
When you love someone but it goes to waste
What could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

Fix him. That’s what I have wanted to do from the start. Restore him to the little boy that I want so desperately to have. One that doesn’t have to work so hard for every single thing. A little boy who can focus, engage and allow us to know his wants and desires. And a boy who doesn’t have a ticking time bomb of a genetic disorder.

And instead it turns out that it’s not him who needs fixed.

God gave us the gift of Mark. I will miss so much if I continue this numbing routine. My kids need me to be present, they need me to not be such a jumpy paranoid mess and they need to get to know the person who stands up to challenging situations and makes the most of them. I know that I’m capable of that, I was at 14 and I am now. I just need to get my head back in the game, focus on Christ and for the first time truly embrace that there’s more in this life that I can’t control. Little by little, I know I’ll find my way but this time it probably won’t be because of my own doing, and I think I’m good with that.

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.