Somewhere there is a mom saying she is tired of picking up her child’s toys.

Somewhere else there’s a mom wishing with her entire being that her child was still on this earth to make incredible messes.

Somewhere there’s a mom saying her child’s nonstop questions are giving her a headache.

Somewhere else there’s a mother aching to hear her child’s voice. Even just one word.

Somewhere there’s a mother who can’t get a thing done with her toddler constantly at her feet.

Somewhere else there’s a mother unable to get anything accomplished because grief is holding her down.

Somewhere there’s a tired mother whose child woke up a little too early.

Somewhere else there’s an exhausted mother who hasn’t slept all night in years.

Somewhere there’s a mom deciding what outfits to wear for family pictures.

Somewhere else there is a mom making decisions for end of life care.

Somewhere there’s a mom tucking her child into bed at night.

Somewhere else a mom is holding onto her child so tightly as they wait for her to take her last breath.

Somewhere there’s a mom wishing for just 10 minutes alone.

Somewhere else there’s a mom begging to never ask for anything again if God would just take away her child’s pain.

Somewhere there’s a mom making well-child checkups.

Somewhere else there’s a mom making specialist, therapist, county, and school meeting appointments.

Somewhere there is a mom telling her children to get their shoes and coats on so they can run out the door.

Somewhere else there’s a mother toileting, changing, and carrying her non-ambulatory teenager out the door.

Somewhere there’s a mom quickly grabbing a new pair of shoes for her child at Target.

Somewhere else there’s a mom meeting with vendors to choose her child’s first wheelchair.

Somewhere there’s a mom in tears because parenting is hard.

Somewhere else there’s a mom in tears because parenting a child with special needs and medical complexities is hard.

Be grateful.

Be thankful.

Be kind.

Because you never know when you could end up somewhere else.

For the last 5 years we haven’t stopped. We haven’t even paused.

Our son has a rare genetic condition, congenital disorder of glycosylation, that affects him in every single way.

He is, unfortunately, on the severe end of the spectrum of the disorder.

He is severely developmentally delayed; his baby brother passed him up with his motor skills when he was just 5 months old.

Our son is also nonverbal but can use a communication device to make requests.

Right now he can respond to a question with a yes or no, or make a request for simple things.

It’s not much, but it’s something.

He is tube fed and takes nothing orally. And believe me, we’ve tried and continue to try.

I am part of a social media group for our son’s condition, which I absolutely adore.

I love sharing triumphs with other families and I appreciate the amount of knowledge that is in the group.

Watching other children achieve major milestones is wonderful to see, and inspiring.

But I have to be honest, it can also be heartbreaking.

I remember back to the beginning when our son was an infant and I would see children with his same disorder crawling up the stairs at age 4, and I would think to myself ​that’s not so bad, we can handle that.

I would see photos of children at age 3 eating a bowl of cereal and I would mentally count the number of feeding therapy visits it would take to reach that age.

I would watch videos of children saying “mom” or “I love you” with tears streaming down my face and just imagine the joy that parent was feeling, biding my time until it came for us.

Well, here we are. Almost 6 years old and none of that has happened for us.

We have accepted the fact that our son is on the more affected side of the spectrum.

We recently had a developmental assessment and the specialist looked at us and kindly said “the report won’t be pretty.”

I think she was trying to warn us for when the time came and we read her report. We know.

We know that he’s severely delayed.

It stares us right in our faces every day with his baby brother soaring past him.

We have reworded our goals from “we’d like him to crawl” to “we’d like progress.”

Simple. Just progress.

Our son has been in physical and occupational therapy for over 5 years, and we work with him constantly at home. But sometimes being on the severe end means all of that doesn’t matter.

Sometimes it means that no matter how many hours of physical therapy we do he still may not be able to achieve the milestones we are striving for.

Even though reading those words aloud chokes me up I know it’s ok. But I would be lying if I said it didn’t sting a little when I see other children with his same subtype on the other end.

Please don’t get me wrong, I’m elated and proud of what other children are achieving but it still makes my heart ache a little.

We’ve also watched families lose their children to this disorder, and it’s such a helpless, heartbreaking place to be in.

It’s a crazy teeter totter because in those moments I want to just hold him and hug him because he’s here.

And it makes me feel horrible for even caring if he walks or talks because after all, ​he’s here

And in the end, severely affected or not, doesn’t really matter.

It’s not always easy to be on this end. It’s lonely. It’s not always fun to watch other children with the same disorder who are much younger pass our son up.

It’s quite sad to play the game of “when did your child sit, crawl, walk…?” when our answers are still pending. It’s heartbreaking to feel like you’ve worked harder and longer, only to fall short.

We haven’t stopped in the last 5 years.

We haven’t even paused.

Because being severe doesn’t mean never.

“After being at an appointment with J for over two hours, I am so grateful for a healthy child. Alexander is so happy and healthy, I am beyond blessed! And when things get tough I always have to think of how different/worse it could be.”

This is an actual journal entry 3 months before our middle son was born. I came across my old gratitude journal as I was cleaning out my bedside table. I half grinned and shook my head as I read my scratchy handwriting on the striped paper.

You see, J is a young boy I cared for who is severely developmentally delayed.

He can’t walk or talk but he can light up a room. His laugh is incredibly contagious and caring for him filled my heart with so much joy. He also has a seizure disorder, and I’m guessing we were at a specialist visit on January 23, 2013.

If I only knew.

If I only knew that our lives were about to be different.

If I only knew that things were about to get really tough.

Not just a little tough, a lot tough.

If I only knew that a few months after I penned that short entry our son would be born with a rare genetic condition filled with therapy appointments, specialists visits, sleepless nights, and tremendous worry.

But I didn’t know.

I had no idea that the “worse/different” I thought of when I wrote that entry was about to become mine. Our life was about to change.

After I read that I wondered what I would have said to myself on January 23 if I knew. What if I knew that Christopher would be born medically complex and severely delayed? What if I could have told myself that he may never talk? What if I could have told myself he may never walk?

What if I would have whispered that when he gets sick your anxiety will be paralyzing and you won’t stop worrying?

What if I would have told myself that the fear of losing him will never go away?

I’m not sure if I would have sat in the corner and cried or if I would have spread my arms wide open in an effort to say ​bring it

Because what if I would have also told myself that yes, the worst days will be days that many parents can’t even fathom. And yes, there will be days when the tears won’t stop falling because life simply isn’t fair. But I would have told myself that the days with triumph and joy are days most parents can’t even fathom.

And there will be days where the tears will fall for reasons other than sadness. The tears of joy will fall over the most seemingly miniscule things and the only people who will understand are those who live a life like yours.

A different life.

If I could have only told myself that the life you think could be worse/different will only make you better. And the child you will have will teach the most meaningful life lessons not only to you but to everyone around him. I would have told myself on January 23, 2013 that my life was about to change.

Big time. I would have told myself that there will be grief. But there will also be joy in journey that I wouldn’t trade it for the world because if I did then he wouldn’t be mine. And as much as this different life can be a struggle, Christopher is mine, and I would never want him to be anyone else’s.

And you know what I find the most ironic in that journal entry is that I truly thought I knew what gratitude was.

If I only knew.

When I was driving our 8-year-old to school he said “Mom, you have a lot of friends.” This took me by surprise since I rarely go out with friends or chat on the phone when my kids are around. He never sees me get ready for “girls’ night out” or pack my bags for a moms only get away.

We don’t even entertain at our house unless it’s a party for one of our kids. My life right now is focused on raising three amazing boys and juggling all that comes with that; extracurricular activities are few and far between.

I wasn’t exactly sure where he was getting the idea that I had a lot of friends. Then he said, “you know, all the people with CDG. The ones you see in California, the ones in Australia….”

Ah hah. Those friends.

When we received our son’s diagnosis of Congenital Disorder of Glycosylation one of the first things I did was join an online Facebook group, a group dedicated for families around the globe affected by CDG as well as medical professionals and researchers invested in the disorder.

Upon joining I was welcomed with open arms with comments of encouragement and posts of members sharing their children with me. I had figured that this page was a page to ask questions and gain knowledge about this rare condition.

I assumed it was a page where I could find files and resources to help navigate this unfamiliar journey. I thought that it was a place to ask “what do you do, what have you done, and what do you think?” regarding issues our son was having.

What a surprise to find out that this page was not what I was expecting.

Yes, it is a page that offers all of what I mentioned above. It’s most definitely a page for parents to help each other and brainstorm when their own specialists are perplexed with their child. A page to gather the most recent research and share what medications and therapies have helped along the way.

What I didn’t know is the page would be all of that and so much more. A page where my tribe is. A page where strangers have become family. A page where we all weep when we lose someone to this life-threatening disorder. A page where we all jump for joy when a milestone is met and we truly know that magic has happened.

A page where I have become so close with many of the parents that “friends” isn’t the correct term; soul sisters is more like it.

We know life is crazy and no matter what happens in life we always have each other’s back. We know that we don’t have to see each other, talk, or text constantly to be important in each other’s lives. We send group chat messages and texts to share heart-warming or you’re-never-gonna-believe-this-happened moments, and sometimes an occasional hilarious meme.

But life is crazy. Our lives are crazy. We can go weeks, sometimes months without one on one contact. But these are the women who truly “get it” and I have the utmost respect and deep love for them. My tribe. My soul sisters. Having them in my life has been one of the greatest things to happen since diagnosis day.

When I joined the small FB community I had no idea what I was getting myself into.

I had no idea I would become so invested in an online family and over the years these families would feel like my own. I never knew I would find women who feel like home. A genuine feeling of belonging. Who knew you could have such a strong bond with people you don’t physically spend hours with. I never expected this.

From day one I have always thought that our CDG community was something special.

And 5 years later; I know it is.