Just Love Him


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In the beginning of our journey when Mark’s medical concerns and developmental delays were unfolding Ike and I said that our mission was to do everything in our power to give him the best life possible while accepting him for who he is, and loving him regardless of how different he may be from what we expected. Sometimes, I lose sight of that.

Recently, I went to a kid’s consignment sale and as I stood in front of the vast selection of infant toys, I thought “Mark would be in heaven.” The bold colors, the buttons, the lights and sounds! And then a mom grabbed her toddler’s hand, who looked to be about three, and I could hear her grumble “you don’t want those toys, those are for babies.” And my heart sunk. It’s funny how certain things will send me over the edge to face my feelings. Each time I read the words “don’t blink, they grow up so fast”, I feel resentful and bitter, because I have an almost three old who is just now figuring out his infant toys. I left the sale, sat in my car, and feverishly typed out a grumpy blog post in the notes section on my phone. It went something like this…

April is Autism Awareness Month. Meh. A whole month dedicated to reminding me of my reality. One trip to the barber, or attending our first IEP meeting is enough to make me aware of autism. An article about wandering/escaping was recently shared on Facebook, and it left me feeling this deep sense of worry, and the wandering prevention kit that I subsequently ordered is now shoved deep within my closet. I don’t want to “light it up blue”.  I want to make it go away. Dealing with the daily battles that routinely crop up leaves little enthusiasm for us to spread awareness and celebrate difference. Though Mark makes progress, sometimes our little triumphs are buried among the discouraging reminders of the differences that exist between Mark and other children.

And on the negative post went.

Most of the time when I write something, I scan over it several times, hit publish and wait for my mom to text me my typos. 🙂 This time, I let Ike read it first. He wanted me to make sure that anyone who read it understood that despite my recent negativity, things are OK in our house. We are struggling, but respectively, struggling well. We try to take our life one day at a time but sometimes certain little moments make us zoom out and get a quick glimpse of the giant mountains before us and it leaves me rattled.

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This is a recent picture. There are still snowmen on my mantle. No judgement. 😉

And then there are moments like this morning when I tried to give Mark a new medication. I was told that the taste was awful and we would have difficulty getting him to take it. Two of Mark’s doctors have been collaborating trying to treat his SIBO, small intestinal bacterial overgrowth, so an antibiotic was prescribed, with the anecdotal hope that it will also treat some of the autistic symptoms he experiences. Within seconds of giving it to him he projectile vomited. I felt defeated. In attempt to disinfect the area, I sprayed the spot with cleaner and walked into the kitchen. Before I knew it, Mark had wandered over, slipped and landed on his back in the cleaning solution on the floor and began to cry. I scooped him up in my arms, my eyes welled up with tears and I felt like I had failed him.

As I cleaned up and thought about my next move with Mark’s medication, I starting anxiously thinking about how I’m going to have to fight both of Mark’s insurance companies to cover the medication that I originally wanted for him that tastes much better but costs thousands. And then Mark, who had recovered well from his fall, walked over, grabbed my hand, put it on his head, and leaned into my legs and smiled. I took a deep breath, inhaled his delicious toddler Cheerio smell, and thought, “just love him.”

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Sometimes I like to hold Mark and listen to the Coldplay song, “Fix You”, and imagine the day where Mark’s autism has faded, the looming dark cloud of his genetic mutation is gone and the person I’ve been missing since his birth appears. I know he’s in there. Locked in tight with his words. And though it’s hard to miss something or someone you’ve never had, I miss him so much it hurts.

It is so difficult to strike the balance of cherishing and loving Mark as he is and then fighting so hard to give him a better life, but part of that better life is having a mama who is capable of rolling with the punches and dusting herself off. I could spend energy wishing things were different, harboring bitterness about how hard everything is for him, but where does that leave me?  So I will vow to love my son as he is, not lament over what he’s not, and embrace the freedom that there is in accepting the gift of our sweet Mighty boy.



Love bears all things, believes all things, hopes all things, endures all things.    1 Corinthians 13:7


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.




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.


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.


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.

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

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.