Understood

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For the longest time, and still now, I have the same disturbing thought. When I see someone with a brand new baby, and I can see the love that is expressed beyond words, the care, devotion and the worry that only a parent knows, I want them to feel what it feels like to have their child diagnosed.

I want them to understand that there is a very clear before and after a diagnosis, because you are never, ever the same.

I want them to feel the coldness that is a waiting room in a doctors office on diagnosis day. The vacant looks from the front office staff as they check in their child on a day that they will never forget.

I want them to look at their precious, perfect child and I want them to feel the weight and the heaviness that exists in the space where they have to say goodbye to the future they imagined.

I want them to be faced with the waves of grief as they crash over and over, often in the most unexpected places, and for the most unsuspecting reasons.

I want them to feel the painful sting of watching other children play functionally around theirs, knowing that they are reaching their milestones and their child is years behind.

I want them to understand the anger that comes with being in this helpless space as they acquire diagnosis after diagnosis. Because it’s not just one. And with each diagnosis, comes a specialist, and a litany of appointments and a number of expenses.

I want them to know what it’s like to lay next to their child as they cry, in a ball with their eyes squeezed shut, unable to communicate what they are feeling.

I want them to know what it’s like to have mountains of paperwork and dozens of meetings, and hours of worry, just to be able to advocate for a level playing field at school, which in the end never ends up being all that level.

I want them to know the depth of anxiety when they realize that their child’s personal safety relies squarely on their shoulders and vigilance, most likely for the remainder of their life. There are no breaks. No moments to let out the collective breath they sucked in when they walked into that doctors office and were handed a diagnosis.

And for the longest time I wrestled with why I felt these seemingly sadistic feelings, and then this morning, I realized it’s because I see things completely differently now, and wish others understood just how I do.

I want others who are not chosen for this path to recognize the depths to which parents like us are impacted. Our son was diagnosed almost five years ago and our wounds are very much a part of the fabric of who we are.

I want others to understand the daily weight of the uncertainty. None of us are guaranteed a long life but when we were told there was no prognosis because our child’s mutation is rare, and there are children who have died with the same condition, we are painfully aware of this lack of guarantee.

I want people to understand that we are different people and forever changed, in good ways and bad. We’ve slowly been molded, shaped and changed into these new creations that allow us to be resilient and yet fragile. Though we bounce back, it still hurts each time we get a new diagnosis, each new progress report and each moment when grief taps us on the shoulder and reminds us of just where we’re at and where we’re not.

I also want others to understand that this special life of ours isn’t devoid of joy at all, in fact, it’s rich with faith, love and community, and it’s fueled me as a person giving me new purpose, vigor and determination.

I share the hard parts not to isolate out the good but to expose the painful side in order for others to get a sense of what we experience, because that is when empathy replaces sympathy and our love for one another can grow.

So when I look at you gazing at your baby, I don’t wish you or your child ill. I want you and everyone else to know that there are many of us deeply impacted by our child’s diagnosis who now see our world through a completely different lens. And maybe, just maybe, if you understood how we are forever changed, this special world of ours wouldn’t feel so foreign.

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. 

An Open Letter to the Parents of My Son’s Future Classmates

Over the weekend Jillian had a soccer game at our local school grounds. Ike was away on a camping trip so with the help of my mom we wrangled both kids that morning. Mom and I took turns taking Mark for wagon rides around the middle and elementary schools. As I pulled him along, listening to the games in the distance, I looked at the school and felt a pit in my stomach. He might go here someday and I don’t know what that will be like. Nearby a dad was kicking a soccer ball around with his little boy who looked to be about Mark’s age, and immediately I felt that familiar special needs parent pang of hurt and jealousy wishing I was kicking a ball around with my son, but this time I just thought, “please teach your little one to embrace mine”. And so I began writing this letter in my head…

To My Son’s Future Classmates’ Parents,

Inside your cells lies a nucleus and inside that nucleus is a pair of chromosomes made up of DNA, which consists of nucleotide pairs, G, A, T, and C. When these amino acids are put together they make up your DNA. (Stay with me, this gets better). If you look at the strand of DNA, you would see that there are different sequences and they are broken down into genes. A gene is a string of nucleotide base pairs that create specific proteins, which are involved in every part of your body, from chewing to blinking to breathing. When you and your children were formed your DNA went through a process of translation of these base pairs. It’s a very delicate and intricate process that makes you who you are, and sometimes there’s a mistranslation, which causes a mutation. In many cases mutations are benign, but in my son Mark’s case, something didn’t transpose correctly in an important spot on his SCN2a gene, which for him, causes autism and a number of other challenges, punctuating his life, and ours. This could have easily been you or your child.

Instead of soccer or baseball, Mark spends his time in therapy learning how to match colors, recognize his name and communicate his basic needs. Last week I watched his teacher spend 10 minutes just getting him to sit in a chair to do his work. That’s ten minutes spent on a very simple motion and request that should be easy, but for Mark it’s not. Everything Mark can currently do has taken him 20 times longer than it probably did for your children. He spends an hour in OT every week working on climbing up stairs, using his hands together and learning how to hold on when he’s being swung.

He’s very quiet, and the few words he knows he can’t easily say and he has to be incredibly motivated to use them, but please know he understands what you say. Please let your children know that if they ever have the opportunity and privilege to be in his class that even though he may not be able to talk, he can hear them. He recognizes more words than he can reproduce.

He may do different things that are foreign to your kids. Right now he screeches and growls because the sound and feeling of the vibration feeds his senses. When Mark was diagnosed we learned that he can’t regulate his central nervous system naturally like most of us can. He needs things  like swinging motion, tight squeezes, and lots of movement to allow him to feel “normal”. Mark actually spends a lot of his free time sensory seeking or “stimming”. Sometimes he spins in a circle, becomes obsessed with corners of walls or runs without purpose. He’s just trying to feel good.

However, aside from the things Mark can’t do, and the odd things that he might do, I want you to know that despite these struggles, Mark is an amazing little boy. You’re probably thinking “of course she would say that he’s her kid”. And while this is true, I do absolutely adore him, I am in awe of how he overcomes so many challenges with so much joy.

Mark smiles all the time, even when most people wouldn’t. Every Wednesday I spend an hour in a play gym at an Occupational Therapist’s office and I watch him struggle to place the correct puzzle piece in the right hole. He gets upset, and wants to run as far as away as possible, but we push him through it and eventually he gets it, and my goodness, you should see him smile! If you ever have the pleasure to meet him, you will hear him giggle and I promise you it will be the best sound.

So my point in all of this is that our story could be yours. One wrong translation of your DNA could mean that you are the one trying to teach your three old that his hands can clap, or to use his voice to tell you what things he needs, you could be using your vacation time for medical appointments and spending every last penny (and pennies you don’t have) on medical and adaptive equipment. And you could be afraid, like me. Afraid that other kids won’t understand your child and that they would eat alone at lunch with perhaps an aide or their sibling, and no one would be their friend.

With the incidence of developmental disorders and autism increasing (the CDC currently reports that one of out of every 68 children will be diagnosed on the spectrum), there will be more kids like Mark. Children who have challenges, learn in different ways and have parents who worry like crazy about their well-being and how the world will treat them.

So my prayer is that in addition to taking time to teach your kids manners, how to be safe, and how to ride a bike, I hope that you also include how they could accept and welcome other children who are different and that being their friend is not a charitable act but a genuine interest in developing a friendship. Kids shouldn’t get awards for befriending children with special needs, the reward should be in the value of accepting, and loving their classmate openly and genuinely.

Be the change that is needed, show your kids how to love others without borders.

Sincerely,

Mark’s Mom

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Every New Beginning Comes From Some Other Beginning’s End

Several weeks ago, I sat in the waiting room of the orthopedic office waiting to check out. Ike had just taken Mark out to the car, sweaty and traumatized from the multiple X-rays, removal of his long arm cast and the placement of a new cast. This was the worst appointment of them all. As Ike laid across his strong lower half, I bent over and held his ears tight with my hands to deaden the sound of the saw next to his face. He shook with rage and fear, dry heaved and gagged, and fought us with every fiber of his being. He was terrified and there was no way to tell him the reassuring things you would tell other children. Of course I said them in vain, hoping something I said would magically make it through. And once it was all over and I was waiting to make the next torturous appointment, I felt the weight of our world, and I felt tired.

 

Mark & Mama

 

I’m tired of everything being seemingly so much harder because of Mark’s limitations. The tech who wrestled his cast onto his arm tried blowing up a rubber glove and giving him a sticker to cheer him up, and none of it made a dent. And if anything it just made me even more sad, almost like it was just another thing I was missing out on in life with Mark.

Ike teared up on the way home. We both felt overwhelmed with the mountains that stood before us. The broken arm was just a symbol for all the things that would always be more challenging because of the hand that we had been dealt.

 

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And then one day shortly before the final removal of his cast and after we had returned from our trip to Chicago, we decided to take away his pacifier when we put him to bed. And miraculously, he slept through the night. And then night after night, car ride after ride, and doctor’s appointment after doctor’s appointment, no paci needed. It was amazing.

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When Jillian was dealing with her pacifier addiction we bought a book that told a story of binkys being sent away to binkyland. After some resistance she decided to give it up. I thought for sure that Mark would be 7 or 8 years old and still need it. How could he get rid of it if he couldn’t understand the binkyland book? My obviously flawed line of thinking further added to my amazement that he had easily dropped the habit. He hasn’t looked for it, “asked” for it or really seemed bothered that it’s no longer a permanent fixture in his life. Tomorrow will be one month sans pacifier and meeting this milestone had shown me a few things.

 

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Mark will do things in his own time, his own way and he will surprise us.

 

And yet as exciting as this milestone has been, especially given how few we meet, I’ve been reluctant to share for a number of reasons but namely because as odd as it may sound, it’s hard to celebrate.

 

Recently, a fellow special needs mama cautiously shared her daughter’s accomplishment and I totally understood her reluctance.

 

There’s a sense of “knock on wood” that if I celebrate it, it will be taken away just as quickly and I’ll feel sheepish and foolish. Like when I shared that Mark waved “bye bye” in speech therapy for the first time. Do you know I have not seen him do it since? His words that have been spoken have only been heard once or twice, and I worry that he will regress, lose it all, and someday someone we know will see us out at a restaurant, and he will be sucking on a pacifier, despite previously kicking the habit.

 

And yet there are so many things to celebrate with Mark right now. He’s beginning to make animal sounds, really good, accurate and amazingly distinct animal sounds. He’s begun to point, attempt words, understand more and more of what we say, and he knows how to stop when running in the opposite direction and will come home when told. That one is huge.

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And yet I’m still so afraid that someday he’ll lose it all. Several conversations I had at the SCN2a conference still haunt me. Parents shared how their children were making progress despite their autism diagnoses and then it started. The seizures. They took everything. And now these children need a number of devices and machines to help them function. So that is why it’s hard to celebrate: you never know when your current challenges and triumphs will fall into the “before” category.

 

But despite the obvious cloud that looms I am trying to savor the goodness of what God has been showing me.

 

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In addition to the excitement surrounding Mark’s burst of development, I am also in awe of Jillian.

 

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Her first day of kindergarten was the same as Mark’s last day of his program. One was ending a year long journey and the other was just beginning. It created a weird sense of dissonance in our house.

 

Mark, Ike & J

 

At the end of Mark’s last day he brought home a social story that showed him pictures of his new classroom and speech therapist since this will all be different when he returns in September. In a way I felt sad that he needed something like this to transition, and realized quickly that this is the first of a long line of social stories that will help him cope with new things.

 

Jillian’s first day of kindergarten proved to be gut wrenching for us both. The morning was filled with crying, tantrums and a ridiculous attempt on my part to document all of it on camera.

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She arrived home that afternoon sweaty, tired and emotionally exhausted, just like me. She didn’t say much about her day despite my carefully crafted open ended questions. That evening our neighbor stopped by on his way back from his evening walk with their dog. Of course he asked Jillian about her day, and of all the things to say, she ran inside and grabbed Mark’s social story to tell Mr. Chip about Mark’s new digs at Kennedy Krieger.

 

 

The next day she went to work creating her own social story illustrating what her classroom looks like and what she will be doing. She took something from Mark’s world and used it to make sense of her own.

 

 

She is such a bridge builder. I often look at her and see her completely unphased by her brother’s loud vocal stims and screeches, the pacing in the dining room, the need to have some type of electronic device repeatedly playing the same melody and has almost no issue with the chaos that one little tornado creates in our house on a fairly regular basis. I think I don’t give her enough credit for adapting so gracefully. Fairly recently, he ran over to her, grabbed her arms, stomping his feet, making loud noises and just gripped on tightly. I hovered in the doorway watching, afraid that he was going to pull her hair or hurt her, and she just looked up at me, smiled and said, “it’s just his way of loving me.”

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She celebrates him in the ordinary and helps me to remember to rejoice in all of his mighty moments. Jillian will learn a lot this year in school, as will Mark, but I have so much to learn from both of them.

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I’m Afraid

I thought that 2015 was tough and that for some odd reason the turn of the calendar would mean blue skies; that perhaps if I wrote about it and buttoned up in a neat blog post with cute pictures of the kids, the present challenges before us would peacefully conclude like the ending of a TV episode. Well that couldn’t be further from the truth. The turmoil and frustration that plagued us throughout the fall and winter have tip toed behind us into spring and here we are in yet another anxiety layered season.

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Our ferociously smart, intense, “spirited” daughter is still struggling with immense worry. The objects of her fear include the sound of smoke detectors, the threat of tornadoes, eating meals, and an electric kettle that we don’t own. I could fill this post with stories upon stories of the mounting anxieties over seemingly benign and trivial things but I’ll leave it at this, our girl is smart beyond her years and the big emotions that she feels are hard to process because let us not forget, she’s only four.

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Our mornings are filled with anguish ridden protests over leaving the house, complete with hyperventilation and blotchy faced tantrums. This daily battle has become so out of control that we sought the help of a counselor. Jillian has gone three times and despite being given some relaxation tools, we still struggle. If anyone knows therapy is a process, it’s me. Yet in the thick of it I want a magic bullet. I want my beautiful girl to embrace the carefree nature of childhood and be a kid, not caught up in all of the potential sources of worry. She saw an allergy commercial on TV at daycare, and that night we had a long conversation about how her sneezes don’t necessarily mean that she has allergies, and we don’t need to be concerned with how bad allergy medicine tastes for the allergies that she does not have. These “talking off the ledge” chats have become all too frequent and it has left all of us tired.


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This morning Jillian asked for a Bible verse and I felt sheepish that it had not been my “go to” weapon for this seemingly insurmountable challenge. I quickly found a short verse that I thought she could memorize.

 

When I am afraid, I put my trust in you. Psalm 56:3

 

I said it several times, having her repeat it back to me so that hopefully it stuck. It seemed to temper this morning’s storm but as I pulled out of the driveway of daycare after peeling both kids off of my legs, I felt the intense dread of worry that seems to follow me around like my own little ominous dark cloud.

 

Earlier this morning, I thumbed through the SCN2a group posts on Facebook and I happened upon a mom who asked a group question, “how old was your child when they began to have seizures?” Her post included that her son began experiencing seizures just one month shy of the age of three. My chest felt tight. I hit the home key on my phone and checked the date. Today is April 1st. We are just one month shy of Mark’s 3rd birthday. Sometimes I forget where we are.

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I like to pretend that at any given time Mark won’t start seizing and lose every skill he has worked so hard to obtain. All of his progress could unravel in front of us in an instant at the onset of a seizure. Potentially irreversible brain damage could occur, it could start any day and that’s frightening.

 

Earlier this week I had a conversation with someone about the efforts of our SCN2a foundation; the contacts that have been made, the research projects in the pipeline and the number of families that have been added to the group. Excitedly I continued about how awesome it all was and in mid sentence they said “what about that is awesome?” And just like that I was slammed down on the ground of the reality of our life. Our son has a rare genetic disorder without a name, no prognosis, no trajectory and presently, no cure. None of that is awesome. I know that. And it scares me.

 

I received Mark’s very first psychological evaluation in the mail yesterday. This was a several month process of assessing his present level of functioning to determine future services. At one of the appointments I watched as they presented Mark with a variety of tasks, tasks that I know he is capable of completing, yet in that moment he wasn’t interested, and so he didn’t receive credit for those items. As I sat across from him and the evaluator I found myself pleading to God silently that my little boy would show them that he could do it. Later, I read through the report, saw how low his scores were and how the intelligence testing could not be completed because he was incapable of even complying with the testing. Mark may now be able to distinguish my photo from Ike’s but there’s a whole ocean of skills that he doesn’t possess and the implications of those deficits keeps me up at night.

The idea of Mark in public school scares me. What if he’ll never have friends? Who will advocate for him when I’m not there? What if he falls? What happens when they have recess? Will he sneak away unnoticed and then not come back when called? What will we do when his little leg gets just long enough to be able swing over the railing of his crib? I walked past his room the other night and heard him banging around, and remembered that he can now open door knobs. What happens when he gets out of his crib and then out of his room in the middle of the night? Sometimes he cries for unknown reasons for hours, and I worry that we’ll have to stop leaving the house or that we’ll have to start living on a newborn sleep schedule again. These are the “tornadoes” and “smoke alarms” that plague me.

 

When Jillian talks about her feelings, she uses words like “terrified”, “frightened” and even “anxious”. I wonder why those terms are in her vocabulary. Maybe her mother is terrified, frightened and anxious. I fear the dark unknown of this special needs life we now lead, and what Mark’s genetic diagnosis means for him, and our family.

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Perhaps God placed that Bible verse in my path more for me, than for Jillian.

 

When I am afraid, I put my trust in you. Psalm 56:3

 

I try, anyway.