It’s a small world.¬†

Once you have a baby with a life limiting disease or an illness that isn’t just a fleeting virus, your world gets so much larger and smaller at the same time. 

You are given access to a community that you were previously oblivious to. Its a world of parents and families that are different from the general public in the fact that they don’t take health for granted. They generally don’t take much for granted, to be honest. Sometimes it starts in the NICU, where your ideal postpartum world is brought to a screeching halt. Sometimes its even earlier than that. Maybe its at an ultrasound when you catch the technician taking a little bit longer than they normally would. Or maybe its a day when your healthy child just isn’t right and you just have that feeling there’s more going on. 

The most important feeling you get from this community is that you are not alone. You most likely are not be the first, and you certainly won’t be the last but we all fit in the spectrum of somewhere in between. Whether your child has a rare diagnosis or one that everyone “knows someone with that very same thing!”, we all share those feelings of bewilderment, sadness, helplessness and at some point, grief. 

And it will come. Grief. 

 It might be fast and heavy, like an avalanche, burying you so swiftly, immobilizing you with the pain. It may come softly and slowly, like a thick fog rolling in during the night; where you awaken lost in an unfamiliar landscape. It may burn hot and fierce for a quick moment, setting your world ablaze, and then fall silently to ashes.  

Regardless of when or how it comes, the only way to truly live with it (and you must, live with it), is to find a hand to hold onto. Someone to pull you out of the depths, hold you close when you feel like failing and give you the help you can’t ask for. 

What is wonderful about this new community is that at some point, you will find a kindred spirit. Chances are that you would never cross paths with these people under normal circumstances. Maybe you wouldn’t even give them the time of day in another situation. Yet these people will become your lifeline in some of the critical moments in your life. It will be the most honest friendship you will ever have as you share something in common that no one wants, a sick child. 

Your children’s hospital visits become a social date, you commiserate over problems you never thought you’d have, let alone share. You offer help and information that is lifesaving because you know how desperately its needed. You cry fat ugly tears when something happens to one of the children as it’s just too close to home. But you can rejoice in the small victories that may seem trivial or minute to most people, because when you live day to day, each second counts. 

There are families I know only through Facebook or meeting them briefly in the halls. Yet I know these people understand my life more than my closest friends and family. On some level, we are all in the midst of an ongoing battle to keep our heads (and our children’s) above water.

When I was ready, I began to realize that despite feeling completely isolated and alone, I have always been surrounded by a network of people who can help. I just needed to look in the right places. I will be forever grateful to the posting I found on the bulletin board in the Unit 2 family room. It was life changing for me and my family. I have a circle of friends I could never have imagined in a million years. Just a bunch of crazy hospital moms and I love them deeply. 

I used to be a Nurse.

Tonight, I watched one of the first medical/documentary type shows since Sam was born. I used to love them, even the over the top shows like Grey’s Anatomy or House. I was a trauma junkie, soaking up every detail, running my internal medical fact checker so I could say yay or nay to what was going on. I watched so closely, spying the techniques, the plausibility of it all, right down the the gauge of IVs. One thing that I will absolutely not forgive Grey’s Anatomy for is the fact they never ONCE used their stethoscopes properly. I’m not talking about a nurse vs. doctor (that debate was ridiculous) but the fact that they always put the earpieces in their ears backwards. There’s no way they could hear anything with it facing backwards. Drives me NUTS!

That aside, I could identify with the feelings of anticipation, exhilaration, the need to fix, to help. And I was always so proud that I was part of the amazing community that could save lives. I actually knew this magic! I had the insight to keeping people alive and safe. That feeling was so fierce in me. Even though some nights I dreaded going to work, I would get to the hallway where only staff could access and I would just beam inside. I’m sure I had a bit of swagger, but I was just so thrilled to be part of the elite club that was truly meant to be there, to put in another 8 or 12 hours of compassion and benevolence. I loved it. Every back breaking, patience testing, chaotic minute. I’m proud to say those feelings stayed with me from the moment I started as an nursing attendant, all through nursing school until the day I left work.

What is more overwhelming now is the closeness of it all. The recollection of the trauma bays where I could only stand by, the codes I couldn’t help with . The ones that involved my most treasured heart, my baby boy.

I was told in November that despite my unit manager advocating for me that my permanent line at the hospital was now terminated. I scrambled as my biggest concern was health benefits, especially since Sam was born into the policy and now I wouldn’t be able to have him approved anywhere else due to pre-existing conditions. I fought with the idea of going back casually, taking a shift or two on the weekends or nights. The reality was that I couldn’t commit to anything. My life can change in an instant and I need to be there for my children no matter what, and not feeling guilty for leaving my co-workers high and dry. I couldn’t be an employee while I work so hard to keep my kids healthy and happy. Don’t get me wrong, I wanted to so badly. To do both work and parenting, like a typical mom but most moms don’t have 3-4 appointments during the week, can use normal daycare or babysitters. They don’t have children that get life-threateningly ill in only a few hours.

So I give in. I let my job go and focus on my family. This is the chapter in my life where I stay home, learn to cook finally, and keep those kids smiling. So much easier said than done.

Will I go back to nursing? I don’t know. I can’t even imagine laying a stethoscope on a child’s chest without having an anxiety attack. The thoughts that race through my mind on a daily basis are too fierce and terrifying that I can’t focus on one particular task. I would never have the patient at the forefront of my mind. I would always be second guessing. I can’t be “present” or “mindful” of what I need to do.

I guess the bottom line is I wouldn’t want anyone else depending on my care.

Except my kids.

geez. that’s messed up.

Where to begin..

He’s almost 2 and a half years old.

Beautifully. Wonderfully. Magically. He’s still here.

Even though two nights ago, he stayed awake for hours past his bedtime, screaming, yelling and cursing at me. (Yes, he swears but not in the conventional sense. It’s more of a gibberish word and a tone that’s absolutely meant to cuss you out.) ¬†After demanding me to lie down beside his crib, he grabbed everything he could get his hands on, lobbed it over the rail and hit me squarely in the face. His aim was uncanny, or totally deliberate, I can’t decide.

And yet I wouldn’t trade it. I wouldn’t ask anyone else to do it for me or wish for it to stop. Because it can stop, so quickly. Despite living in a very carefully constructed bubble of daily denial, I fully realize our mortality. His mortality.

Sometimes, when he is asleep and I get into one of those destructive pensive moods, I forget that he’s still here. That he lives and breathes. It’s so easy to get consumed by the emptiness of having a sick child. The despair and constant grief that comes with living with a dying child.

There was a time I grieved for so much. For the baby I expected, the life I thought I should be living, the childhood I thought my daughter would have, for the future I thought was certain. It took me a long time to just understand that this reality was genuine; this was my life, regardless if I was prepared. I had better adapt and enjoy what small happinesses we have before it’s too late and I find myself drowning in possibilities that are not, and were not real.

I write and I cry in silence and then all of a sudden, he wakes, yelling for me, his dad or his sister, and I am pulled back into an alternate reality where he seems fine, he plays, he talks. He’s delightful and adorable. A tiny tyrant that demands pretzels and Lego but does it with the biggest grin. Besides, it’s not so bad. It’s just a few medications to give every 4 hours; it’s just a few choking spells that make you jump up and run to his side; it’s just the screaming frustration that he has because he can’t move around like his sister. It’s just the cool fingers and toes, the blue lips, the exhaustion from a few steps. But you smile and love and teach and play because you are the mom, and moms don’t stop. Somehow you have to power through it. You can’t stay in bed and cry. You can’t stay lying on the floor while the kids play around you (although you’ve given it an honest effort.) Now there are other people counting on you. If you stop, he stops and that is not an option.

So if I look like I haven’t slept in weeks, had a proper shower in days, shoved anything in my face except coffee and leftover Cheerios, it’s because I most likely haven’t. And I wouldn’t change a thing.

(Except maybe for a new heart. I’d take that.)