For him.

blogphotoI sat alone in the family waiting room while our son was in the operating room and I cried. I tried to hold it in, I didn’t want the other families there to see me break down. I texted my husband, I was afraid to call because I knew my voice would break and the tears would fall.

I didn’t expect this. The audiologist showed me her results of the ABR (auditory brainstem response) with a look of concern and empathy. His hearing loss nearly doubled and is now considered “severe” in many of the tones. She told me that during the test she called our son’s audiologist to let her know that things weren’t looking good; everyone was a little bewildered. Severe loss.

More loss.

She walked away and I did my best not to cry. But as the time went on I couldn’t hold it in. I used up the tiny box of scratchy tissues on the table next to me and let the tears fall. My heart ached for our son. And it wasn’t just the hearing loss. It was all of it. All of the “loss” in his life was hitting me all at once. Hasn’t he had enough loss in his life? Hasn’t he had to give up enough? I have spent innumerable hours grieving over the life he has “lost” due to CDG. Don’t get me wrong, his life is full of so much joy and triumph, but at this moment all I was feeling was deep grief. Grieving the life we so wanted for our darling boy.

I sat there wondering if he could potentially lose all of his hearing. I wondered if we would ever hear his sweet voice. I thought about the future and couldn’t help but grieve. I am so tired of hearing the words “loss” and “severe” when it comes to our little boy. Man, he works SO hard. We work so hard, and yet there are days when that doesn’t mater. His body has a mind of it’s own and there are countless things completely out of our control. I know he’s severely affected by his genetic condition, but it never gets easier hearing it. This day hit me like walking straight into a door you think is open, only to get slammed back on your butt.

I was sitting on the floor, defeated.

But you know what? There’s only one choice after that happens.

You get up.

You wipe your tears, dust yourself off, and open the door.

Or you kick the door in. Whatever works 😉

I know that along this journey we’ll continually walk into doors, but I promise that I will always get up. I will wipe my tears, put my chin up, and kick the door wide open. For him. Forever for him.

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Perspective

Perspective: “the ability of someone to take into consideration and potentially understand the interpretations, outlooks, or actions of their self and of other people.” (psychologydictionary.org)

One of the greatest lessons I have learned since Christopher was born is perspective. I sincerely try to write and share pieces of our life simply for a bit of insight. I want people to know what our life is like raising a child with significant needs. My ultimate hope is to share our family’s  struggles and triumphs in a graceful way. I never want to come across as complaining or that I’m sharing for sympathy. Believe me, your sympathy is the last thing I want.

My hope is that I come across as grateful, trying to share the silver lining where I can. Yes, there will be days when the silver lining is extremely hard for me to see. And I have my days where grief takes over. I could make a list of things to be angry about but I’m not going to. I can’t change our life, the only thing I can do is live the best way I know how.

Three years ago my dad passed away from anaphylactic shock from a bee sting, Christopher was diagnosed with congenital disorder of glycosylation, and my uncle took his life tragically all within six months. Life was hard. Days were difficult. I shed more than my fair share of tears.

Instead of asking why me I started asking why not me? Because you know what? Tragedy is everywhere. Your neighbor. Your child’s teacher. You. Every one of us has a level of tragedy in our lives and instead of asking why me we should all be saying “why not me.” None of us is more important than the next. None of us is more equipped to handle loss and sadness more than the other. But many of us don’t take the time to recognize other people’s sadness or tragedy.

I was not prepared for a phone call on a Friday at work saying my father had passed away suddenly. A father who hadn’t returned my call when I called on Monday, and I will forever wish he had.

I was not prepared for a call from my child’s neurologist an hour after a brain MRI saying “how much do you want to know?” And when she told me not to google the words she just said I knew when I did finally google I would be scared out of my mind.

I was not prepared for a call from my mom in the early morning to tell me the tragic news that my uncle took his own life. And as much as I wanted to know details and the whys and how, I actually really didn’t.

Not one person is prepared for any of that.

Thinking about each of those scenarios I can’t help but think further and as much as I wasn’t prepared….no one else was either.

My mom had to call me to tell me my father passed away. Can you imagine the strength it took to say those words?

Our neurologist called me the day after his MRI saying how terrible she felt about herself that she delivered our son’s news over the phone. I reminded her that I specifically asked her to tell me all she could over the phone. Can you imagine how many of those heart wrenching calls she has to make?

Again, my mom had to deliver the tragic news of my uncle to me when I was still grieving the loss of my father and the sadness swirling around the diagnosis of Christopher. Not an easy call to make to say the least.

I think that I have been given a great gift. The gift of perspective. I will forever be grateful that one of the many lessons Christopher has taught me, perspective is one of the greatest. Because of him, I will cherish our life. I will be kind. I will forgive. I won’t, and don’t, sweat the small stuff. I will live with abandon. I will do my very best to always find a glimmer of hope, even if it’s just a tiny sparkle. And I hope that when you read one of my blogs you do too.

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In the weeds

I recently read an article where the writer was a mom of young kids and her life revolved around them. She was trying to explain and apologize to her friends because she was “in the weeds.” She was too busy caring for her little ones who required so much of her to be a good friend. She felt bad for not responding to emails or phone calls. And she reminded her friends that it won’t last forever.

My immediate thought was it will for me. The season of our son requiring everything of me isn’t going to end anytime soon.

He will need me to tie his shoes year after year.

He will need me to change his diapers or help with toileting forever.

He will require supervision always.

He won’t move out and move on.

I’m going to be in the weeds forever.

And let me tell you that the weeds can be a lonely, scary, overwhelming place to be. I know every mother has been here. You’ve been exhausted from countless sleepless nights. Or worried about an illness going around your house or community. You’ve been pulled in every direction known to man, and have no time for yourself. You go to bed too late and wake up counting the hours until bedtime. You’ve had to cancel an event that you’ve looked forward to all week because of a sick kid. Haven’t we all been there?

But for some of us the season of being waist deep in caring for our child won’t end. For parents like me, the weeds are where we live.

One thing I can say about the weeds is that although it can be extremely lonely, I know I’m not alone.

Every moment I feel grief wash over me, I know another mother is feeling the same. Every second I feel out of place or that I don’t belong, I know there’s a mom who gets it. When the day is long and I’m tired of fighting for what our son deserves I can hear another mom telling me “you got this.” When I’m feeling so isolated and exhausted that I start crying while wiping the crumbs off of my stove, I know that unfortunately there’s another mom sitting on the bathroom floor crying with me. Every dream I let go of I know another mom has done the same.  I know I’m not alone in the weeds, and oddly enough, that brings me some comfort.

Another thing about the weeds. There’s joy. And a lot of it.

I know that every moment I’m pushing our son to be stronger, there’s another mom enduring hours of appointments to achieve another goal. Every time I’m over the moon about something seemingly insignificant I know without a doubt there is another mom crying tears of joy with me. Every smile is cataloged into my memory. Every giggle is recorded in my mind. No moment is wasted or taken for granted, and I know with every fiber of my being that there are other moms who feel the exact same way. There are far too many moms who know that each and every day is truly a gift.

You may be here. You might be in the weeds too. It may be a season or a lifetime.

But just know that I’m here. You aren’t alone, I’ll be here for awhile.

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Isolation

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.

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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.

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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.

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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 swing..so 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.

 

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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.

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Control

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. 

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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.

 

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