Read personal stories from our founder and Jennifer's mommy, Libby, along with other Warrior Moms and news from our Unravel team.

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waiting for the shoe to drop

November 27, 2018

A common saying I had no idea where it came from .. but its been chasing itself around my head the last few days.. So I had to find out ..

according to wiktionary

Etymology : A common experience of tenement living in apartment-style housing in New York City, and other large cities, during the manufacturing boom of the late 19th and early 20th centuries. Apartments were built, similar in design, with the bedrooms located directly above and underneath one another. Thus, it was normal to hear a neighbor removing their shoes in the apartment above. As one shoe made a sound hitting the floor, the expectation for the other shoe to make a similar disturbance was created.

I was kinda the opposite of this. I honestly was walking around fairly confident in regards to my children there were no other shoes that could drop.. I have been more scared of something happening to Tony versus them… but still just in case we started all of Unravel for them because of her. ..

Because I know ..  to my depths I know the biggest danger I can do something about is cancer.

Jonathan had been having some symptoms that made me be a bit more aware. The other morning they came to a head.. sorta.. In a normal situation I would have not taken him to the ER..  wouldn’t have asked about the MRI versus CT but I did… because something was gnawing at me, in me.. to take him..

This moment right after his MRI was so similar to Jennifer.. For both of them I had a hint something was wrong before I knew (spoiler alert its not cancer) For Jonathan the MRI tech asked if he had been hit in the back of the head ..

No. You sure? No injury back here? No.

But then I knew.

I was already fighting desperatly to stay in the present. I was lucky enough to get to be in the room with him during his MRI. I never was with Jennifer. And I watched him.. holding still like a true stud and I had to fight like hell not to dissolve .. to stay with him. The kid who actually needed me then.. versus the one stuck in memories who I can no longer help.

the shoe dropped.  i craved you then jennifer. i wanted you to help. forever 6 but so much more than that now.

But  I knew, with her questions this MRI tech.. she saw something..My boy was there with us as we walked back to the ER room where Daddy was waiting. My number one was Jonathans  worry .. which was actually a huge reason to do the MRI .. to put his mind and Nicholas at ease.

To know he was ok..

Walking back I knew he wasn’t .. at least not totally.. But he didn’t need to know that yet. When Jennifer was diagnosed with the brain tumor..shared here.. when we pieced it together but before we saw the dr Tony and I couldn’t make eye contact. .. And this time I avoided it too.. Because I knew my fear would take over if I looked into my best friends eyes.

Luckily the wait was short.

Ummm mam can I talk to you out here please.

Its not cancer.

This poor doctor, he truly felt terrible for us.

But we did find something. us baby.

I tried to really listen .. to really focus.. . No matter what it’s not terminal and not terminal we can do.

I pulled myself back to be present. It’s called chiara malformation. .. not enough room for the cerebellum and brain stem.

are you fucking kidding me. Brain stem. Again.

I wanted to tell you not in front of your son. Do you want to switch with your husband.

Nope. Lets have you tell them both. So he did. We got down to his level to talk to Jonathan and tell him.. they see something not quite right. But it’s not cancer.

Would you like to see the scans. Tony did. So the two of us went out to see. I had a few questions that the ER doc didn’t know the answers, but he would make some calls. But he did tell us right away, you can go home.. it’s not an emergency. He did tell us we would need to see a pediatric neurologist…

Tony went back to Jonathan and I went to make some calls. Bright side I know some people. ..

I was able to call two incredible, gentle and honest physicians we have been lucky enough to build relationships with. One helped facilitate getting him into a specialist quickly. I do not take for granted at all how lucky I was to have their help immediately.

I knew he would be ok.. Somehow I did… but I would be lying if I said I wasn’t scared.

We have now seen the dr. .. and he is ok. .. We watch to see if symptoms get worse . . If they do we consider surgery.

so why the hell am I more than scared now. why am I terrified? 

I’ve been here before though. With a child that appeared to be doing better than they were. Both pre-cancer (we had no idea the ticking time bomb) and final check up visit Jennifer seemed to be so improved. .. but she wasn’t.. She was weeks from death and progression was starting. But nobody could tell..

Now I have to watch for symptoms for him.. without becoming overbearing.. obsessive and constantly scared…

And I can’t miss something either. I cannot do that again.

his brainstem.. honestly are you kidding me?

I have never felt so damaged after her death as I do now. And certainly never so gut wrenchingly scared.

jonathan leaned in to kiss his sister..

I literally have to watch and wait.. both of which I suck at.

Blood and stitches. Cancer and child loss. None of that has changed my most basic parenting philosophy. Let them be kids. Let them fall and make mistakes. Let them learn young to be better as adults. Figure it out for themselves what they can and cannot do.. That lesson will remain far longer than me telling them ever will.

But now this damn thing has me tying myself up in knots. Unable to do anything to fix the minor issue. But minor when it comes to my kids brain.. to their brain stem is apparently my kryptonite.

I watched him play with his cousins and siblings on our monkey bars and was stricken with fear. And that fear had a lot of layers. I am fully aware of that. But my struggle is to separate the real fear with the damaged DIPG mama fear. Because they are so interwoven with each other.

I don’t want to limit him.. To stop him from living and embracing life. But I don’t want to be foolish and allow him to make choices that endanger him. And right now I have to admit I am feeling pretty helpless at sorting it all out.

So now I feel like I am straining listening for that other shoe to drop.

i know its not up to you

but if you can sissy

catch that shoe for mama …

..until there is a cure..




  1. Christine Attebery says:

    I am so sorry to hear the news you received about your son. I have a friend who’s son was also diagnosed with chiara malformation a few years ago. She lives up in northern CA….I can put you in touch with her if you would like to speak with another Mom to see what her experience has been; maybe get some insight or helpful advice? Let me know…

  2. Cece Gannon says:

    It is a lot to wait and watch……and, yet, you will. Sending blessings and more fortitude…..

  3. Crystal Navarro says:

    Oh, we’ve been through so many medical “scares” since losing our son…..I am just not the same person. I had to remind myself constantly that “this isn’t Jonah”….when I would want to FIGHT with the doctors, and scream at them, when the current situation did not necessarily warrant it. I’ve almost “expected” to see cancer again….a son dealing with a joint/muscle issue…I thought for sure he had a tumor of some sort. So certain that when they showed me an xray and there was no tumor, I completely thought they were lying. I’m sorry he has this chiari….like you said….we can do “not terminal”, but that doesn’t make it less scary. I’ve felt the same way. I can do “not cancer”….but it doesn’t mean “no suffering”. And that’s such a hard road to take with your kids, OR your spouse. But our kiddos…..just not right……

  4. Toby says:

    Fuck. I cannot even imagine what you guys are feeling and thinking right now. I am so fucking sorry. And, I am here for you all, whatever you need!

  5. Ashley Saunders says:

    Oh Libby,
    I could hardly breathe reading this. I had to really focus as my brain was racing off. As you know, Arwen, forever 3 had dipg too and I fear constantly for her twin.
    Sending you love❤

  6. Crystal says:

    She’s looking after him. She’s giving you strength. I don’t know about this malformation but I’m praying for just a small bump in the road for Jonathan! Still praying for all of you in your road through grief!

  7. Melissa says:

    My husband has Arnold Chiari Malformation, which I think is what you are referencing, but didn’t know until he was grown. It’s one of those things where symptoms come and go. He will have times where he will have bad headaches off and on for a while and then they stop, until they come back. We suspect my youngest may have it because she has another neurological birth defect, but her neurologist said they don’t do anything, unless she has symptoms. I’m not even sure what can be done…

    Prayers for you!

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