I met a friend for coffee recently. Or maybe I should say I briefly saw a friend at a coffee shop. I tried. I tried to get out of the house and have an adult conversation, with a friend. Christopher had a different idea.

Last weekend I made plans to have coffee and enjoy a fall walk with a friend. I was looking forward to getting out and grabbing a pumpkin spice latte for a treat. I walked into the coffee shop full of smiles pushing him and strolled over to the table they were sitting at. Everything seemed to be going well…until it wasn’t. He started screaming. He started banging his head and kicking his legs. I couldn’t figure out what the problem was so I decided to quick order my coffee and try to settle him down. The woman in front of me was very indecisive and I saw the poor cashier give me apology glances over and over. I’ve learned to tune his meltdowns out but I can’t say the same for the rest of the coffee shop. All eyes were on us.

I was hot and sweating as I waited to order my coffee. He wasn’t letting up. I took his jacket off wondering if he was too hot. He continued to wail and arch his back. I showed him a couple of books only to have him throw them on the floor. After what seemed like an eternity waiting for my pick-me-up I told my girlfriend that we were going to wait outside. I left the shop and walked into a greenhouse next door as my eyes filled with tears. There I was, making the decision to find time to enjoy an outing with a friend and yet I was alone.

We walked past the mums and I had to try to hold it together. This life is a different kind of lonely. It’s isolating. It’s isolating without even trying to be. As we walked around the greenhouse, around and around,  I tried to calm him down but I knew we only had one option. We had to leave. I walked to my car and texted my girlfriend. The tears and screaming kept on. He was upset and I didn’t know how to help other than to go home. This was not the first time, and I know it won’t be the last.

I can’t imagine not wanting to be somewhere and unable to move or vocalize your want.

I can’t imagine being hot in my coat and incapable of taking it off or simply asking for help.

I can’t imagine being overstimulated with no way out.

I can’t imagine having a need go unfulfilled because I can’t speak.

Believe me when I tell you that we are working so hard on communication but it is anything but easy. It’s hard. Really really hard.

As I drove away and tears fell on my face while listening to the sobs from the back seat, I couldn’t help but feel for him. If I felt alone how did he feel? I was upset that this is our reality. His reality. He’s in there, he’s so incredibly smart, and he can’t get it out. He can’t show me or tell me…yet. I know there will be a day when all of this is behind us, at least I hope so.

So much of me feels isolated, and in those moments I can only imagine how isolated he feels.



The “nevers”

As parents we all have dreams for our children. Dreams for a productive, joyful, and meaningful future. The older Christopher gets I start silently tucking things away into a “never” category. And before you think that I’m being negative, it’s not. It’s realistic. Just as I’m realistic that our college son will never become a belly dancer and our six year old will likely never be a chef. There is not even a part of me that believes they will achieve those things in their lives. But for Christopher it’s different.

I feel like if I accept the “nevers” now maybe they won’t affect me in the future. It’s my way of protecting myself. Maybe I won’t mourn them when the time comes when he “should” be doing those things. For example, he’ll never drive a car. Him going to the DMV and taking a license test is incomprehensible. If I tuck this one away now, maybe when he’s 16 it won’t sting. Maybe I won’t get tears in my eyes just thinking about it. Independence, responsibility, and the freedom of going anywhere he pleases. Silently slid away. His wedding day won’t come. Another in the “never” category. Standing at the end of the aisle waiting for his bride and dancing with me as family looks on. Him being a father. Tucked away. I tell myself it’s fine. There are plenty of people out there who never get married and have children. These big moments in a person’s life will never come to fruition for him and I’m learning to accept that. If I say it out loud and tuck these dreams away I hope it’s enough. Enough to protect my heart.

When you have a category of “nevers” you must also think of the “wills.” This has been a bit trickier, there are so many unknowns with his condition. I can’t say for certain anything that he absolutely will do. Walking. Talking. Eating. These are in a different category, not even the “will” one. I don’t know if I’ll ever hear him say I love you. I don’t know if I will ever hold his hands while walking around the house. I would love to say that all of his hard work WILL pay off, but I can’t say with absolute certainty.

What I can say for certain is this: I have plenty in the “will” category. I will never give up. I will do whatever it takes to help him achieve those dreams. I will advocate to give him the best opportunities to become stronger, smarter, more independent.  I will hold him every time he’s upset and crying. I will dance with him in the living room. I will snuggle into his neck just to hear his giggle. I will kiss him countless times a day and never take him for granted. I will do whatever I can to keep him healthy and safe. And I will whisper to him that even if we have to add to the “nevers” it’s okay, my heart can handle it.

Cause one thing that will never change is how much he’s loved, no matter the nevers.



One more promise

I was having one of those I want to crawl out of my skin days the other morning. I was feeling down about myself and my body. Definitely woke up on the wrong side of the bed. At 6:30am I already didn’t feel thin enough or just plain good enough. Good morning body shaming. I could barely put my shirt on due to the aching in my left arm. I was exhausted as soon as I stepped out of bed. I so wished I could have crawled back under the warm covers and let the day slide by. (And waking up with stronger, thinner body would have been a plus.) But as the beeping continued I sleepily walked to his room.

As I stepped into his room I started to tear up.

He looked at me as if he’d been waiting for me his whole life.

I lifted his 27 pound, 3 year old body out of his crib and kissed his face.

I grabbed his feeding pump and bag with one arm, cradled him with the other, and went downstairs.

I asked him if he wanted to watch a show as I bent down and laid him on his mat. He gave me his usual giggle when I said the word “show” and immediately rolled to his tummy to prepare for Little Einsteins.

After logging onto Netflix I walked into the kitchen to get his meds ready and make myself a much needed cup of coffee.

With my nice warm cup I walked back to the living room to take a seat next to him. I needed to change his diaper, get him dressed, put his hearing aids in, put on a new tube extension with food bag, and give him his medications.

As I did all of this I thought to myself my legs are his legs, my arms are his arms.

My thoughts of my body not being “good enough” vanished.

Without my legs, he would stay in one place.

Without my arms, he wouldn’t get the things he needs.

To push his wheelchair, my body is needed.

To lift him in and out of the van, my body is needed.

To carry him up and down the stairs, my body is needed.

To hug him close and tell him he’s loved, my body is needed.

My legs are his legs, my arms are his arms.

How often I forget to be grateful for the things I take for granted.

Christopher can’t walk. He can’t talk. He can’t sit unsupported. He cannot clap. He can’t bring a spoon to his lips. He cannot tell me when he’s hurting and where it’s hurting. He can’t enjoy the sweetness or saltiness of food. He can’t tell me he loves me.

As he not-so-patiently waits for me to push play on his show I look at him and make a promise.

I promise not to take my strong, capable body for granted.

I promise not to long for a thinner, different, “better” body.

I promise to be grateful for the things that come so easy to me.

I promise to thank God for the body that I was given. My body that can stand, walk, talk, crawl, speak, clap, hug….and push the buttons on the microwave to warm up my now cold cup of coffee. 😉

My legs are His legs, my arms are His arms.



At the park

I had an experience at the park recently where I didn’t share. Yep, you heard me right.

This felt so foreign to me as I am always reminding our 6 year old to take turns and share. I tell him that others need to use the equipment too and to step out of the way if someone needs to get by. Usually we talk about the “park rules” on our way there so they are fresh in his mind.

As he ran off to play with a friend I wheeled Christopher over to the adapted swing. Or as I heard one mom call it “the lazy swing.” Ooookaaay. That right there was enough to get my blood boiling. But that’s a different day. I hoisted him out of his stroller and propped him in the swing. I situated his feeding pump backpack to where I could comfortably push him and nothing would be in the way. He’ll never stay sitting up since he’s still small for the swing so he likes to lounge sideways and enjoy his time being pushed. After about 5 minutes on the swing I overheard a mom and a child talking about wanting the swing. The mom told the child to come and ask me when we would be finished.

Now this is where I could have answered differently, but I didn’t. I replied I don’t know when we’ll be done, since this is the only piece of equipment at the park he can use.

I received a strange look from the mother and they reluctantly walked over to the other open swings. Just so you are aware, every single other swing was open. Even the ones that require 5 arms to get your child out of since their feet get stuck in the leg holes. We were the only ones swinging and they wanted the swing we were on.

Now I am not sure what the look she gave me meant. Was it a look of discomfort? A look of confusion? I don’t know what she was thinking when she heard my honest reply. I wasn’t sharing the swing anytime very soon and I didn’t feel bad about it. There is adaptive equipment at the park for a reason. Now, if another child was there who needed the swing I most definitely would have given it up much sooner.

I cannot tell you how often I have to wait for the adapted swing at the park because an adult is sitting in it. I have waited nearly half of our park time for him to use the swing as an adult sat in it talking on her cell phone. (I didn’t interrupt her to ask for the that is my fault we waited so long.)

I actually couldn’t believe my response at the park the other day! Normally I’m a people pleaser and want everyone to be happy, but at that moment the only person’s happiness that mattered to me was Christopher’s. He can’t squeal down the slide or run on the wobbly bridge. He can’t climb the rock wall or sneak through the long wavy tube. He was so content in the swing and enjoying the park that I didn’t want it to end for him.

I really wasn’t trying to be a jerk, but I’m not sharing the swing.






The thief of joy

I vividly remember a conversation I had with a friend when our son started physical therapy. He was 5 months old and still very much an infant. He couldn’t reach his arms to grasp a toy and no matter what we did he couldn’t hold his head up. I recall telling her that at his age he wasn’t too far behind and if we closed the gap early it would all be okay. Comparing him to his peers he wasn’t that too far off. At this point in his life we had no primary diagnosis, only “developmentally delayed.”

I would look at milestone charts and see where he should be. I would quickly google “what should my 5 month old be doing?” I would compare to his big brother or whomever else had a baby his age. If there was an exercise on the internet to increase neck strength you better believe I did it. As each month went by I did the same thing. I held the checklist in my hands at his well-baby check ups and I would sob. Not one. I could never check off a single thing on those lists. I still can’t. Heartbreak after heartbreak. Comparison after comparison. I wanted so badly for him to catch up.

The gap between him and his peers has progressively gotten wider. It has taken him 3 years to get to the same place a 5 month old is at. Three years of extreme hard work and dedication. Three years of immeasurable tears. He is one of the hardest working kids I know; he’d be the only one if I didn’t know other children with CDG. These kids have to work for     e v e r y t h i n g.  Giving up is not an option. I am in awe of our son and other children affected by congenital disorder of glycosylation. I can honestly say I have never worked as hard as these kids do to achieve a goal.

As I thought about the conversation with my friend I realized that the game of catch up is over. I’m done. No milestone charts for me. I’m finished comparing. I honestly couldn’t tell you what a typical 3 year old is doing because that no longer matters to me. The only thing that matters is him and who he is. It goes without saying that we will never give up. We will keep pushing forward trying to achieve more, but checking off “the list” isn’t on my list anymore. I simply want him to thrive.

Instead of focusing on how far he has to go I’m focusing on how far he has come.

Instead of sobbing at the check lists at his check ups I’m bringing my own list filled with what he CAN do.

Instead of googling milestones I’m celebrating progress.

He will continue to work harder than anyone I know. For. Every. Little. Thing.  And because of that, I can’t compare him. There is no comparison.






I’m going to admit something that isn’t particularly flattering.

I’m controlling. Especially with our youngest son.

I’m doing it all.

Please don’t roll your eyes or stop reading and think I’m turning my nose up in an I’m-better-than-you sort of way.

It is far from that.

Every morning I wake up and immediately care for him after a night of interrupted sleep. I’ve been up multiple times from the beep of his feeding pump and occasional need to be rocked at 3am. I get out of bed, lift him from his crib, and head to the kitchen to get his medications ready. We laugh and giggle as I carry him down the stairs. I kiss his neck and breathe his sweet scent in. Then I feel his skin and realize he feels a bit warm. Quickly I take his temperature and say a short prayer to the heavens to keep illness at bay. All I can think of is a recent Facebook post about another child with the same disorder who out of the blue became lethargic, seized, and then was intubated and in the hospital for days. I can’t help but recall his last 11 day hospitalization from a cold. I picture the sweet faces of CDG children that I came to love and lost over the years. Lately, all of this goes through my mind. Multiple times a day.

After taking his temperature, realizing it’s not a true fever, we are ready to head off to our usual therapy appointment. His temperature fluctuation is likely his body just being his body. We greet his therapist with a smile and tell her all about what we’ve been working on over the weekend and soon he’s off to “play” while I sneak into the observation room. While he’s in therapy I call a clinic about an insurance issue, leave a message for his social worker, and email about fundraising. I check a few things off of our list and in the process recall a few more items that need immediate attention.

The day goes on. I’m in control. I know what is happening, when it’s happening, and I’m making it happen. We hug and kiss too many times to count. There’s more therapy, more tears, and definitely more kisses.

Congenital disorder of glycosylation is extremely unpredictable. The unthinkable happens to our kids. Our son contracted a staph infection in his blood and his wound from a routine surgery when he was six months old. His surgeon said she went over and over his surgery in her mind because “that shouldn’t have happened.” But it did. It happened and the things that “don’t happen” DO. We know this. We’ve experienced this.

His disorder has no certainties. If there is anything that is certain it is that surprises lurk around every corner. I have zero control over what happens.

I am simply trying to hold onto any small spec of predictability. I am clinging to anything that I pray to God won’t all of a sudden turn into something it wasn’t. I am doing everything in my power to make sure my son is safe, healthy, and alive. I will do everything I possibly can to ensure he gets what he needs. I know it sounds dramatic, but it’s real. It’s my real life.

We live a life where the possibility of losing our child is very real. As much as I try to stuff it away, it never really leaves me. The reality is always there, haunting me.

I am controlling.

I am doing it all.

I’m not doing it all because I think I can. I’m not doing it all because my way is simply the best. To be honest, I’m doing it all because I’m terrified that if I stop and I lose him I will never forgive myself.

I will want it all back. I will want one more bedtime story. I will beg for him to wake me in the middle of the night for snuggles in the rocking chair. 3am, 4am, 5am, I will want those precious minutes back.  I will be shaking my fist at the heavens pleading for a few more kisses. I will crave the feeling of his soft warm skin on mine. I will want nothing more than to turn back time.

So, yes, I’m doing it all. Not because I can, but because my heart knows no other way. 



Parents please

The boys and I were at the grocery store this afternoon, and as usual Alexander excitedly pushed Christopher around and caught the eyes of a few shoppers. There were two in particular who were extra curious, a boy and girl close to the ages 3 and 6. The little girl watched Christopher with curiosity as we zoomed by grabbing a pineapple and plums.

I heard “mom, that looks like a wheelchair” coming from her as they began to pass us on the other side by the butter lettuce and bell peppers.

What came next from mom surprised me…”shhhh….just keep walking.”

Just keep walking? This was most definitely not what I expected and immediately I felt a twinge of sadness in my chest.

I wanted to turn around and say this:

It’s okay if she’s curious. It’s okay if she wants to know why he isn’t walking. It’s alright if she talks to him, in fact it’s welcome. He’s a little boy, just like your little boy. He’s sweet and charming with the most adorable grin. He loves Bubble Guppies and pulling his big brother’s hair. Please don’t tell your children to just keep walking. In that one sentence you just taught your daughter to ignore someone with a disability, to ignore someone who is different. You taught her not to see my son.

Now I don’t know if mom helped explain his need for a wheelchair on their way out of the store. I can only hope she did. I can only hope that she assured her children that people come with many different abilities, and we can embrace each other’s differences.

Parents, please teach your children that being different is okay and it’s more than okay to ask questions.

Help your kids make sense of it all, because if you don’t, who will? They need you to help them understand.

If you don’t have the answers, all you need to say is “maybe you should talk to him?” We all know that moms love to talk about their kids, and as a mom of a child with special needs we won’t pass up a chance to advocate and teach others. I don’t have all of the answers but I will be more than happy to try to answer any questions your kids may have.

Please encourage them to walk up to us and have a chat.

Teach them acceptance not ignorance.

Show them love not avoidance.

And most of all, don’t tell your kids to simply keep on walking with their questions swimming in their heads.

Start the conversation and please let them see my son.






Best buddy

There are days when I want to tell you that I’m sorry.

I want to take you in my arms and tell you that I’m sorry this isn’t what I planned.

My dreams for you and your little brother looked a bit different.

In my dreams you were running around the grocery store knocking cans of beans off of the shelf and blaming each other.

In my dreams you were running through sprinklers and tattling on one another for turning off the hose.

In my dreams you were splashing in the tub together with bubble beards on your faces, only to soon be yelling “he’s in my spot!!”

In my dreams you were running out to catch the bus with your fingers linked together…sometimes.

In my dreams you were teaching him how to ride a scooter, complete with choosing a band-aid after a small mishap.

In my dreams you were best buddies.

But what I am realizing is that my dreams of what your childhood could look like don’t matter. What your childhood looks like now is the only thing that does.

You lovingly push your brother around the grocery store, and adamantly tell me “I got this.”

You swim up to your brother at the pool and ensure he giggles at the sight of your goggles as you come up for air right near his face.

You reach out to hold his hand in the car while he’s crying and remind him over and over that you’re right there.

You exclaim to me that you believe he said your name anytime he giggles and babbles while you two play peek-a-boo.

You remind me over and over that you need to hug and kiss him before we head upstairs to his crib for bed.

At specialist appointments you are more worried than I am and frightened for him when he has to get a lab draw, but reassure him over and over that he’ll be okay.


You are best buddies.

Now I really need to apologize. I’m sorry for not giving you the credit you deserve. I’m sorry for not believing that a childhood out of the ordinary could be extraordinary. Just because I know your relationship could be so different doesn’t mean you do too. Would you change it? I don’t know?

All you know is that you love your little brother. You have yet to ask me the hard questions. Why doesn’t he talk? Why can’t he walk? Why doesn’t he eat? It’s astonishing to me that you don’t see those things, all you see is him. Your silly little brother who pulls your hair and blows raspberries with you. Your little brother who wants nothing more than for you to make him giggle. Your little brother who loves when you push him fast around the grocery store while I tell you over and over to slow down. Your little brother who eagerly leans in for a bedtime hug. Nothing else matters.

The only thing that matters to you is him. Your best buddy.






My tribe

There’s life before, and life after. Before. Before the hospitalizations. Before the surgeries. Before the specialist visits. Before the unknown and constant worry. Before the sleepless nights. Before the hours upon hours of therapy. Before the tears. Before CDG.

Life before was akin to walking on a paved path. Smooth with an occasional rock or stick in the way. Nothing I couldn’t walk around or simply step over.

Then there’s after.

All of a sudden my smooth path stopped abruptly. Up ahead I saw rocks. Not just pebbles, big rocks. Cliffs. Steep cliffs. Terrain never seen before. I looked around and didn’t know where to go. I was terrified and alone. I glanced over my shoulder at my smooth path and as much as I wanted to run back I knew turning around wasn’t an option. I had to face the unknown in front of me. I had no idea how I was going to navigate this new terrain. I shakily stepped onto the rocks and started to stumble, but something amazing happened….you were there.

You reached your hand out to help me gain my balance. You held on tight to me as I started falling backward. As I continued walking something even more amazing happened, more of you walked alongside me. Some of you looked at me with supportive smiles and reminded me I could handle this. Many of you walked next to me, all tripping and stumbling, but holding each other up never letting one another fall. Some of you have seen terrain like this before, and for many of you it was just as foreign to you as it was to me the first time I laid eyes on it. We continue to move forward, hoisting one another over boulders and linking hands to carefully sidestep on a ledge. It’s not all terrifying. It’s not all excruciating. Alone it would be but together we can do it. We look at each other with encouraging smiles that say you got this.

I couldn’t navigate this terrain without you. My tribe.

Thank you for picking me up when I fall.

Thank you for guiding me when I’m lost.

Thank you for laughing with me when I need it the most.

Thank you for carrying me when I don’t think I can push any farther.

Thank you for holding my hand in the silence.

Thank you for loving us.

Thank you for reminding me that there’s so much beauty in the journey.

Thank you for motivating me to make a difference.

Thank you for not stopping when the pavement ended. Thank you for being next to us as we navigate this foreign territory. Thank you to those of you who were waiting up ahead with your faded map to help us as we embark on this journey. Our life would not be the same without each and every one of you.

Thank you for being part of our story, and allowing us to be part of yours. Not a day goes by when I don’t have something to be thankful for.

And today, it’s you. My tribe.



When we lose one of our own

I know my son lives with a life threatening disorder. Many days this reminder doesn’t live in the forefront of my mind, but it does always live in the back. There are days that are harder than others to push it down, especially days when we lose another of our community.

While processing another loss, our son’s disorder PMM2-CDG, sneaks up on me like a dementor* and whispers in my ear I can take him too. Uncontrollable tears ensue. While this dementor looms over me I can’t help but feel helpless and afraid. I begin to feel terrified of germs and my child catching a cold while shopping at the grocery store. I anxiously think about our next inevitable hospitalization. I start to worry more and more about making the decision to send him to preschool but I know I can’t protect him from everything. More than anything I want him to learn and grow but above all I want him here. Alive and healthy, looking up at me with his ever-so-charming grin.

Along with my fear there’s anger. I am so angry that our life is one of unknowns, worry, and loss. Life is unfair and I understand there’s no way to get around that. I also know that living a life with a medically complex child is not for the faint of heart. I am so angry at our CDG dementor that I want to kick and scream at him but as I do this my fists go right through him. Fighting him is futile. No matter how hard I try and fight nothing changes, he stands strong and tall staring at me. He refuses to leave, reminding me that we aren’t immune to him.

Sadness, fear, and anger overwhelm me but that’s not all I feel.

Admitting my relief is one of the hardest statements to make. I want to take those words back, but I wouldn’t be being honest with myself. My tears fall on my son and relief washes over me. He is here. I can feel his clammy hand on my face and kiss his soft cheeks. I try to stuff the relief down inside me because I know that guilt is soon to follow. I feel immense guilt that I am relieved. I am holding my son, gazing into his eyes while there is another family saying goodbye to their angel. As I rock him our dementor lingers close to me, never straying far. I shed tears for another loss, put myself in the shoes of the parents and sob. My grief is real, but I know that in no way does it even come close to touching how those parents feel.

The losses of our community are incredibly hard. We love each other’s children as our own, and when one loses the fight we all feel it. I used to try not to feel it. It’s just too much. The reality we live is heartbreaking.

Through the tears I start to feel courageous. I can’t let the dementor get the best of me. I can’t let my fear take over. I pick myself up and remind him that we are strong and we will persevere no matter what. I remind him that I won’t let my fear control me and because of him we will make a difference. I remind him that I will take each day as a gift and not take anything for granted. We will make changes because of him. We will become better because of him. I thank him for teaching me to love deeper and live fuller. I stand tall and show him that this is a fight I will fight, and win or lose, our fight, my son’s fight, will be worth it. With this, he starts to retreat. No longer is he taunting me with the ultimate fear of losing my son.

As our dementor takes his place in the back of my mind I am reminded that life is so precious. Life is short and no matter the journey, make it worth it. Give a few more hugs and kisses. Embrace every day and make memories. And never, ever, take anything for granted.

Unique Talk About Fantastic Quotes About Life   - About Quote

* From Harry Potter, “A Dementor is a non-being and Dark creature, considered one of the foulest to inhabit the world. Dementors feed upon human happiness, and thus cause depression and despair to anyone near them.”