warrior mom | (Un)Diagnosed and still okay

I have written before (insert too much!) about the importance of creating a village of support when you have a child with special needs. Heck, even with a typical child a support system should be included with every birth certificate.

I began running in earnest about a year ago. I ran to get away from the stress of just, well, everything. Taking 20-odd minutes to focus on nothing but breathing and trying not to trip in public. It wasn’t always pretty, but I finally found my rhythm. I managed to avoid eating any more bugs and discovered the joy of ~~tripping~~ running in the woods.

Bailey& I running last fall. Or falling last fall.

Recently a friend asked me to join a group that runs for those who cannot. It is called I Run 4. This is a great non-profit that matches one runner for one buddy.The idea was sparked when the founder, Tim Boyle, began dedicating his daily run to a friend who was physically unable to run. They created such a bond a movement was born.

My friend’s daughter is a buddy. Her runner sends not just the child, but the family encouragement and emotional support to get through days that can be overwhelming. In return, my friend’s daughter provides a smile, unconditional love and gratitude that someone out there care enough to run with her spirit. She also provides the runner with a reason to get out there and run when it would be easier to hit the snooze button.

Thus, a new village was created for my friend.

https://youtube.googleapis.com/v/zM56CoucRm4&source=uds

Here’s the thing though, not enough special families know about the program. There are over 3,000 runners looking for their buddy! Buddies are those with physical or mental handicaps. Persons of all ages who are willing to be the inspiration for the runners.

If you are in need of a village, of some support or you are just looking for a way to inspire someone, please consider signing up your child or adult with special needs to be matched. Follow this link: http://www.whoirun4.com/match-me/ to find out more information. There is no cost to join, for the runner or the buddy.

The runners are waiting to be a part of your village. Are you ready to be part of theirs?

The nicest thing some one ever did for me was to be my village and allow me to pay it forward.

And that is how I finished the sentence, the nicest thing some one ever did for me was….

**This post was not paid for/sponsored by IRUN4. I will not be moved up quicker on the buddy list (darn) unless more potential buddies decide to join the program. I did receive permission by IRUN4 to use their links and information to promote their program.

Dear Mom in the Elevator,

I’m sorry. I apologize for leaving so quickly. I saw you and your husband in the elevator at Children’s. You were wearing the badge of the NICU. You had hit the elevator for the respite floor. You looked so spent. So wiped. So scared.

As I left with Boo for her cardiology appointment I turned and said, It gets easier.

Then I left.

I’m sorry. I should have said something sooner. I should explained that it gets easier but not better. That today you are worried about your newborn and tomorrow you will be worried about you toddler.

But I swear it gets easier. You will be hit in the gut many times over the next few ~~years~~ decades. Right now, believe it or not, is the easiest time of your life with a sick newborn. You have the support of awesome nurses and physicians who allow you to nap, to eat, to cry and to ask questions.

Soon, hopefully, you will be discharged. You will be scared. No, you will be terrified. As much as you looked forward to the moment of taking your baby home you are scared to your core. Because at this moment you realize you are parenting without a net. You are taking a child home that just 8 hours earlier was on a cardiac (or other) monitor. The doctors and nurses assure you that they are healthy enough to go home. As much as you (and everyone you know) prayed for this moment in time you are terrified that you are not ready.

But you are. There are just somethings you have to do to make sure you and your child stay whole.

You need to create a village. That friend that says call me, what can I do, I’m here for you. Hold them to it. Call them and say HELP ME I’M SCARED. More scared than you ever imagined. Unless you have been in the NICU you cannot describe the level of terror. They won’t get it, but they will hurt for you. They will be there for you. But only if you let them.

But I get it. I understand the moment you thought your child was going to die. The moment when you realized they would live. The moment you were told they were coming home.

It scared the crap out of me. I mean, like almost threw up I was so scared.

There will be moments in the future when you will worry, when you will cry, when you will say this is not what I signed up for…but they pale in comparison to the moment.

The moment when you go from being a parent in the NICU to a parent without a net.

Here is what you need:

Your partner. You are in this together. Remember that and hold them to it.
Your best friend. They promised to be there forever. Hold them to it.
Your mom. She loves you, no matter what. She might not understand what you are going through, but let her be there.
Your pediatrician. If you do not have one that is willing to be answer your call at 2AM find a new one. Their job is to be there for you and your child. Hold them to it.
Your friends. Here’s the thing. They want to be there for you. But they don’t know how. They are afraid to call and bother you, they don’t want to burden you, they are ashamed that they complain about their child talking nonstop when yours is nonverbal, they don’t know how they can help. So tell them. Tell them what you need. Be it a pizza delivered, a bathroom cleaned, a shoulder to break on or a text fest where you just spew. But let them be there. Don’t hide what you are going through because then they cannot help. You need them, it’s your job to let them know it.

Lastly, and this is the most important, listen to your inner warrior mom. You know your child better than any doctor, nurse or provider. If they smell funny to you then something is going on. I once had a nurse tell me that mother’s instinct trumps doctors order any day of the week. Remember that.

When you gave birth to a child with a medical issue and/or special need, you didn’t just become a mom (sorry to tell you). You became a warrior mom. One who advocates, medicates, does therapy, uses Google to the ends of the research and who loves their child beyond all measure.

It does get easier. Not better, but easier. The caveat to being easier is to have your village. Go find them. Embrace them. Lean on them. I should have done it earlier. I am one of the lucky ones. My village found me.

Dear Mom in the elevator, you are not alone. You are scared. You are terrified. You feel overwhelmed and heartsick. But you are not alone. Create your village. Embrace them. That is what makes the NICU experience bearable. I remember just 5 years ago keeping people away. I missed out on the support I needed. It took years for me to get it. That my village was there waiting to be tapped. Once I understood this journey became easier.

Not better, but easier.

Don’t make that mistake, Dear Mom In the Elevator. Let your support system be there for you now and forever.

Love,
A parent who has been there and has the t-shirt.

A parent that is there for you, if you need.

A mom who wishes she spoke up sooner. That she said HELP. That she allowed those who love her and her child to help them.

PS–I had a different post almost ready for this Finish This Sentence Friday, Dear Mom…but then the elevator happened.

Holy crap I’m a cohost and really hope I didn’t screw this up 🙂 Please link up below!