Support

Once upon a time, the lovely, incomparable Julie encouraged me to join a group, to start a blog on a site where other moms gathered to support each other. These moms had all one through unexpected experiences. Some had delivered premature babies who spent months in the NICU. Some lost their babies to chromosome issues, birth defects, still birth, prematurity. Some of us had full term babies who still spent time in the NICU and had ongoing issues even after coming home.

All of us knew what it meant to have dreams dashed, hope washed away with the strong antiseptic soap provided by the hospital.

That site was a Godsend. Julie is an angel.

In case you’re going through the devastation of a premature birth or the diagnosis of birth defect or you’ve lost a child, that side was Shareyourstory.org. It’s a support group provided by the March of Dimes. The ladies (and the few gentlemen) there are amazing.

These days, I’m doing pretty well with my status as a special needs mom. Olivia’s amazing, she’s so very much come into her own as a person, as an individual. I don’t need nearly as much support as I once did, back in the days before her diagnosis, when we were figuring out therapies, failure-to-thrive concerns, reflux, doctors who said she was ‘too pretty’ for there to be anything wrong…

But, a year plus out from chemotherapy and I find I’m floundering in my own doubt, my own status as a ‘cancer survivor.’

Am I?

Of course I’m a survivor, I’m alive, right?

But right now, I am on constant edge, waiting for the other shoe to fall. I wonder if every single pain I have, every twinge, is the cancer coming back.

My index finger hurt for no reason over the weekend. I wondered, “Can you have cancer of the finger?”

That’s so stupid.

And I know it’s normal. I do. But I feel so lost, so alone.

My family is amazing, we all know that.

But they can’t understand the constant low-level worry that buzzes around in my head. They don’t know that I still hurt almost all the time. They don’t know the fear I have each night when I go to sleep, the dread at every doctor’s appointment.

But others do know. People have been where I am, they understand and they’ve felt this too.

I need to find those people. I believe they can bring me down to a level of worry that is manageable. They can tell me that it gets better, that with enough time of being ‘well’ I’ll get past this stage, this worry, this sense of impending doom.

There are a couple of women I know from other areas of my life, one from the above mentioned support site and the other who has a daughter (also Olivia, if you can believe it) who are farther along than I am in their journey of surviving breast cancer but I hate to bother them. I would rather find a group so we can spread out the burden of support. I know, I KNOW, both of those ladies would be more than willing to help, to listen, to give me the benefit of their experience but…again, I have a hard time asking for help from those I know are already giving so much of themselves to the world.

Then again, I would absolutely want anyone who was worried or stressed or just starting their cancer journey nightmare to reach out to me. I’ve heard from quite a few people who feel breast pain or have had an actual diagnosis who are scared and need reassurance. I want to be there for those people.

So…

Everything and Nothing

I fought for over two years to find Olivia’s diagnosis. I have two years’ worth of posts (almost daily for a while) in the archives of ShareYourStory where I lamented not knowing what was wrong with my baby.

I also spent a lot of time talking about sleep because back then I was getting very little of it.

But that search for a diagnosis was very much the focus of a lot of my posts. I thought having a diagnosis would change everything.

In the end, it actually changed nothing.

We continued with therapies. We continued loving Olivia. We went on with treating her like Alyssa’s little sister, expecting that she would walk even if the research her doctor told us not to do (duh, of course we researched 5p- syndrome) said she wouldn’t walk.

We continued to talk to her even though the research said she would never talk back to us.

And I continued to post at Share. I continued to lean on the women I’d met there, women who were further in their journey and who understood my desperate need to help my baby be the best she could possibly be.

Nothing changed.

And yet, everything changed. Suddenly, having a diagnosis of 5p- syndrome (aka Cri du Chat) meant we had an answer to why Olivia only weighed five pounds and two ounces even though she was born nine days past her due date. That’s 41 weeks, two days gestation for anyone counting.

We now knew why she didn’t sit up until she was a year old, didn’t crawl until she was seventeen months old, why she didn’t walk until she was twenty-nine months old.

That answer meant the world to me; even if it didn’t really change anything.

It changed my heart. It gave me something to focus on. It let me see that even at two years old, Olivia was already defying the odds that the research gave her. It showed me that she was amazing and I was allowed to be so proud of her just for being her. Every single milestone started to mean even more than it already had meant, which was a huge morale booster.

But nothing changed when I thought about Olivia and who she was. She was still my feisty, stubborn girl who rolled her eyes at her occupational therapist. She was my second born, my baby, who fought so hard to learn everything that came naturally to her sister and her cousin, who was a year younger than she was.

She was still my competitive sweetheart who watched that one-year-younger cousin walk and decided that damn it, she could do that too. And so she did.

Getting that diagnosis opened a whole new world for us. It brought new Facebook friends into our world to show us that we were alone in this world of 5p- syndrome. Even though the statistics say that only 1 in 50,000 babies are born with 5p- syndrome each year, there are lot of these amazing kids out there. And their parents love them as much as we love Olivia.

But still, the diagnosis changed nothing when it came to my main source of support, which continued to be ShareYourStory. This is the place where I vented before the diagnosis and it’s where I’ve continued to post both celebrations and frustrations for the past almost eight years since receiving Olivia’s diagnosis.

This place is everything to me. It’s provided lasting, deep friendships for which I am so grateful. It’s a place where I can vent, where I can laugh and cry and not feel judged for anything that’s happened.

It’s a place where I can give back to others who are facing diagnoses of their own, who are facing NICU stays, who have been dealt the most difficult journey of all, a world without their child. In this place, we can support each other, lean on each other, be each other’s everything while expecting nothing in return.

The Best of Friends

I got home last night at about 8:40. I was supposed to be home around 7:00 but my flight from DC was delayed by an hour and then, it was raining in Detroit. I hate it when it’s raining and I have to drive roads in the dark that I’m not very familiar with.

But I made it.

And it was worth it.

My weekend was so lovely in so many ways. My flight out of Detroit left right on time and actually arrived in DC early. EARLY!?! I know, right?

I was the first one to arrive at the our destination city and so I was able to buy the girls souvenirs before meeting with the first of many friends who were coming in from all over the country. Around 11:30 the last of our core group arrived and we made our way to our hotel where we were lucky enough to be able to check in early and drop off our bags.

We managed to get a little sight-seeing in that afternoon and spend the evening laughing and, for some, (not me) drinking. Much bawdy laughter ensued during a crazy game of Cards Against Humanity.

I was lucky enough to room with Julie and Laura. And these two generous, gracious women let me have my own bed. See, they’ve known me for what seems like forever at this point and they know that Olivia STILL tends to join me in my own bed more often than I appreciate (once is more often than I can appreciate these day…just saying.)

But because they’re loving and generous women, they made sure I wasn’t missing home too much.

At one point, Julie pulled up Pentatonix’s cover of the song Cheerleader so I wouldn’t miss Alyssa too much.

And on Saturday morning, after Julie and Laura worked out at the hotel gym (I did not join them because, well, because I didn’t want to) Laura climbed into bed with me and asked me to scratch her back.

I responded to her the same way I respond to Olivia these days. I rolled away from her and muttered, “Sleeping.”

Everyone should have friends like this.