I was laying in bed with our 8-year-old reading bedtime stories when I remembered I wanted to remind my husband of a medication change for our 5-year-old.

I quickly ran to the top of the stairs to let him know we were increasing one of his night-time meds and ran back to the bedroom with our older son.

When I hopped back in bed my 8-year-old asked, “Mom, is it harder having a CDG (congenital disorder of glycosylation) kid than a regular kid?”

I asked him what he thought?

“Yep. You have his tube and you have to think about a lot of stuff.”

A lot of stuff.

We do, we have to think about a lot for Christopher.

We have to think about medications, specialists, therapies, appointments, illnesses, and so much more.

We have to remember to administer medication multiple times a day, watch for the warning signs of low blood sugar or an illness brewing.

We have to do daily therapies to help him make progress, inch by inch.

We have to juggle life with our elementary age son and infant, along with getting Christopher to his private therapies after his few hours at kindergarten.

There’s also the IEP, communication with his intervener and school nurse, paperwork for the county, and always fighting for what our son deserves and needs.

But we also have to think about how having a child who is severely developmentally delayed and medically complex affects our other children.

Our 8-year old’s questions keep coming.

He knows his brother was born differently.

He knows that he’ll never grow up and live alone after a conversation when he talked about life when Christopher is an adult and has his own house.

I had to shatter his vision of that when I told him that Christopher won’t ever live without mom and dad.

The response to that was a, “hmmm”, followed by, “I don’t want to know more,” as he hid his head in his pillow.

I worry so much that he’ll resent the time we need to take to care for Christopher.

I worry he’ll feel the weight of the future on his young shoulders.

I worry that we aren’t doing enough to show him he matters just as much as his brother who requires much more.

I worry that he won’t know how much he’s loved.

When I asked him if he thought it was harder having a brother with CDG I anxiously waited for his response.

“Mom, you’re the greatest, *insert kiss*, and I think it’s more fun.”

I know that being Christopher’s brother comes with a lot more.

More patience, empathy, and experiences beyond his age.

I know that our family has, “a lot of stuff.”

But included in that, “stuff”, is love beyond measure.

And fun.

I know that this term is not something every parent uses and many have strong feelings about not referring to their child with, “special needs.”

I can understand and respect this view, but I will still use the term special needs when it comes to my son and I’ll tell you why.

According to Merriam Webster, one definition of special is: being other than the usual: additional, extra.

First and foremost, our son is a child. He is a sweet 4 year old little boy who loves books and snuggles. He has a heartwarming smile and a giggle that can make anyone’s lips turn up at the corners.

He throws fits when he doesn’t get his way and can be very jealous of his new baby brother. He loves Daniel Tiger and one of his favorite things to do is shake his head “NO.”

But his needs are extra.

His needs are additional in comparison to his siblings and many other children we are in contact with. His needs exceed the needs of his 4 year old peers.

To be honest, almost everything about him is “other than the usual.” He needs medication administered daily; medication that is vital to his health.

He is tube fed nearly 24 hours a day with a GJ tube, needs his blood sugar monitored, and has his G port vented all night long.

He has vision loss and moderate to severe hearing loss; with these two combined he qualifies for deaf/blind services in school. He attends occupational, physical, and speech therapy several times a week.

He cannot walk so we have to carry him and transfer him all day long. He is starting to sit for longer periods of time but he struggles with balance so he needs to be supervised at all times.

He is nonverbal and has yet to say his first word, but uses a communication device to make requests, say “hi,” and communicate many other wants and needs.

Along with the daily things we do for our son he also sees multiple specialists to monitor his condition.

I am sure I could go on and on regarding the seemingly small things that we do on a daily or weekly basis that are much more due to his disorder.

Dressing, teeth brushing, toileting, bathing, the list goes on and on. And when he’s sick the list is even longer.

Everything is additional. He has special needs. Extraordinary needs.

There is no getting around the fact that our son is not like his peers.

There is no hiding the fact that what we do on a daily basis doesn’t come close to what most parents do for a typical child his age.

And using person first language, I will say our son has special needs. He is not my special needs son…he is my son with special needs.

His needs are extra. Additional. And most definitely other than the usual.

The strain of influenza, H3N2, is one of the very worst, one that medical professionals truly hate. I hate it too.

As a mother of a child with extraordinary needs and a body that can’t fight the flu like others, this flu season is terrifying.

I don’t want to find out how our little guy’s body would react to having to fight off this nasty virus. I can’t even begin to visualize the treatment and outcome.

Here are some things you can do to help from spreading the flu:

1. Stay home if you are positive for the flu! You can be contagious even 5 days after the onset of symptoms.

If one of your germ infested droplets touches a surface and someone else touches said surface and then wipes their nose or mouth they could also now have the flu.

I am begging you…just stay home.

2. Wash your hands. And wash them again.

Upon entering your house from running errands or getting home from school or work head straight to the sink and wash your hands.

Lather with soap, wash every inch of your hands, and sing your ABC’s. Twice.

3. If anyone in your house is cuddled up on the couch with the flu, wash every surface in your household.

Flu germs can live on surfaces for 1-2 days. Get out your Lysol spray and Clorox wipes and disinfect all of the surfaces you can.

4. Don’t cough into your hands. I know that this should be common sense, but use your elbow.

One of our son’s favorite shows is the Bubble Guppies, and I will quote them and say, “use your germ jail.”

Use a kleenex to wipe your nose, not your hand, and wash your hands again. (Do you see the theme here?)

No one wants to get the flu, and I realize that spreading the flu isn’t intentional.

But I think if we all take these 4 precautions we can help from spreading the flu even further.

As a parent with a child who would end up in the hospital if he contracted this nasty virus, I thank you.

I know MANY other parents with typical children and children with special needs also thank you, actually, we all thank you.

And remember to wash your hands.

Your village may consist of 5 people or 50. Your tribe may be filled with online friends or a local community you see face to face.

Whoever makes up your village is irreplaceable, I know mine is.

Valentine’s Day is typically romantic, filled with chocolates, hearts and roses, but I’d like to express my utmost gratitude for our village on this day with nothing but words.

Happy Valentine’s Day to our village. I love my tribe. I love our family.

My life wouldn’t be the same without you. My life is richer because you are in it. I wake every morning and know you have my back. I don’t have to wonder and worry about who is there for me.

I know that I have written many times about the loneliness I experience as a mom of a child with extraordinary needs, but I know that I truly am never alone.

You are always there. Always willing to lift me up.

You have made homemade meals and delivered them to our door when life was too crazy for me to even think.

You have visited me in the hospital when our son was sick, carrying a large bottle of hazelnut coffee creamer to help me stay awake after sleepless nights.

You have celebrated my birthday with me on the 5th floor at the children’s hospital with pizza and a helium balloon.

You have called, texted, and private messaged prayers, good vibes, and all the positive energy you can muster when I have asked. You never disappoint.

Not only are you there for me in times of need you are eager to share in our times of joy.

Milestones for children with developmental delay are extra special, and I can’t thank you enough for celebrating alongside us. When our joy is also yours this means the world to me. You get it.

Thank you for loving our son. Thank you for looking past all of his diagnoses and seeing him, a beautiful, bright little boy.

A huge thank you and fist bump to the warrior moms in my tribe. I love our candid conversations about this life we are living.

I love that I can say nothing at all and you know, you know what I am going through. I am so grateful to have you to share tears with when life is filled with sadness and loss.

But more than that, the laughing-til-I-cry moments are everything.

You and your children are priceless to me. You lift me up. You have helped me navigate this journey and for that I am eternally grateful.

There isn’t a word big enough. Thank you seems too small.

It takes a village. A tribe. A family. I love and appreciate each of you for being part of ours.

Happy Valentine’s Day.

Parenting a child with special needs isn’t a competition.

None of us will be preparing an acceptance speech to receive our trophy for any of this.

None of us will be handed an oversized check written in our names any time soon.

I cannot tell you how many times I have witnessed the “one upping” on special needs pages on social media or in group conversations with other moms.

I know I’m not alone in this, which really is so sad.

I have had conversations with other parents who have told me that they have been made to feel as though they aren’t doing enough because another mother is doing more.

Or the stresses they are feeling aren’t big enough because someone else has it worse.

What exactly is worse?

What is enough?

It’s all relative and individual so please stop comparing.

These social media pages are meant to be supportive. These mom groups are supposed to be a safe space for parents to get advice or share experiences.

As a group of moms who are living lives that are different than parents of typical kids we need to stick together. We shouldn’t be divided.

Aren’t we supposed to lift each other up instead of tear one another down?

We should be fist pumping and giving one another high fives any chance we get.

Can we stop comparing and competing? No one wins.

This life is hard enough.

A good friend once said “hard is hard.” Isn’t that the truth?

One person’s hard is their hard. One person’s busy is their busy.

More doesn’t mean you win.

More appointments. More diagnoses. More surgeries. More sleepless nights. More fights with the county, school, or medical professionals. More specialists.

I don’t care if your child has one specialist or ten; it’s all hard.

Having a child who struggles with health issues or developmental issues is hard.

Having a child who you are constantly worried about is hard.

Fighting for your child to have the best life possible is hard.

Sometimes just getting out of bed is hard.

As moms we shouldn’t have to feel that we can’t share our experiences with other moms because they may seem “less” to another. No one should ever feel like their child’s struggles are not as bad as others.

I know that you lay awake at night worrying.

I know you have shed tears wondering what your child’s life will be like.

I know you wonder if you really are doing enough. The very last thing you need is someone else saying they have more.

We are all dealing with MORE.

It’s not a competition.

No trophy.

No ribbon.

The only more we should be doing is showing more love and support. We all deserve more of that.

I was chatting with a friend a while ago about our daily life and I mentioned something about heading to another appointment, and said “You know how it is.”

To which she responded, “No, I don’t know.”

Most people would have nodded politely and moved the conversation along.

She didn’t.

She acknowledged that she doesn’t “know.”

She can imagine, she can try and put herself in my shoes, but she can’t know.

For some reason this small comment has always stuck with me. I appreciate her saying that more than she will ever realize.

Maybe it’s because so many people don’t try to understand and even if they try it’s still hard for them? Maybe it’s because I thought I knew before I really knew .

Or maybe it’s because there are days I feel so alone I want others to really know what this life can be like.

For many years I cared for a very special little boy.

I transferred him from his wheelchair to a chair many times a day, pushed him all around Target and fed him strawful by strawful of a blue icee, and watched him squeal with delight as he watched The Wiggles….over and over.

Thanks to him I can sing the mashed potato song like nobody’s business. Over ten years I cared for him, so of course, I thought I knew.

I thought I understood the struggles. I thought because I cared for him day after day I “got” the pain and knew the joy. I honestly did, but boy was I wrong.

It’s like I was standing in the doorway of their home but never inside.

You can only see so much from the door.

You can’t go upstairs and feel the carpet on your feet. You can’t take the steps to the basement and run your hands down the banister.

You can stand in the doorway leaning as far as you can to get a good glimpse, but you can’t actually touch anything inside. You can smell the fragrance of dinner but you can’t actually taste anything.

There is so much more. There’s only so much you can see from the doorway.

And until you take a step inside, you won’t know.

Now that I’ve crossed the threshold, I do really know.

Our four year old has congenital disorder of glycosylation; a rare metabolic condition that affects nearly every part of his body.

He is nonverbal, uses a wheelchair, struggles to do the simplest task and is the greatest thing to ever happen to me.

Since he came along I have had emotional aches in my body I never knew existed. I have shed countless tears over things I never dreamed I would experience.

I have cried in the shower or on the way home from an appointment more times than I can count.

But I’ve also cried tears of joy. Many tears of joy.

I’ve experienced happiness that you can only feel when you’ve taken a step inside. Joy you can only feel when you are no longer looking in.

Now I know. Now this is my house. I’m no longer looking in. I can feel, touch, smell, and taste it all. I know now that unless you are inside you won’t know.

So if you are trying to get someone to understand your life or you feel frustrated because those around you just don’t get it – just know this – they can only see so much from the doorway.

They will never know.

As much joy as the season brings it also can bring parents glimpses into a life that we may have longed for.

And like birthdays, Christmas is a time of year that can occasionally be a difficult time.

I know gift giving can be so hard for family as they try to find an appropriate gift.

Please know we are overjoyed for you and your enjoyment but somewhere inside of us we may be wishing for the same experiences.

The other night I held our youngest son and cried. Our lives are about to change.

His life is about to change. His life that I have tried so hard to give him all that I can.

For the last 4 years he and I have been inseparable. Yes, we have other children, but he and I have a very special, different relationship.

He’s the reason I stopped working outside of the home and now work harder than ever as his caregiver.

I take care of all of his activities of daily living, schedule his appointments, visit with specialists and therapists, and give him an insane amount of kisses and hugs every single day.

I am far more than his mom. I am his advocate, his cheerleader, and his voice. He’s my baby. And in a little over a month, he will be a big brother. And I would be lying if I told you I wasn’t a little bit sad and nervous for this change.

Yes, we are excited. Yes, we know how much joy this new little bundle will bring our family. But yes, we are a little anxious too.

I held my 4 year old “baby” and as I looked at his sweet face the tears just began to fall. Change is hard and this change will definitely be a large adjustment for us.

He will no longer have me all to himself all day long. He will no longer be the only little person I have to care for while his brother is gone at school all day long.

My tears were tears of worry and fear.

Thoughts of managing all of his cares and the cares of a newborn started to overwhelm me.

My tears kept flowing as I told him I would do my very best to continue to keep his quality of life at the top of our list.

I told him that I will always and forever fight for him, advocate for him, and be his voice when he needs me. I promised him that the kisses and hugs will never decrease.

And as my tears kept falling he continued to do two things; he smiled at me with a twinkle in his brilliant eyes and pushed his lips onto my face to kiss me over and over.

He was telling me to stop worrying. He was telling me that it will all be ok.

Yes, our lives are about to change but if anyone can do it, we can.

We’ve come this far and as I looked at his sweet face I wiped my tears and realized that as much as our lives will change, our lives will also stay the same.

As much anxiety as I have about adding to our family I also have the same amount of excitement.

My advocacy, fierce love, fight, and never give up attitude won’t change – I guess the only thing that will change is how full my heart is.