Live Like You Were Dying

My friend Brooke sent over this story the other day about a woman whose son is terminal. He has a disease that is guaranteed to shorten his life and the quality of those short years. She speaks about how her parenting style is different. Does it really matter if your child eats all their vegetables if they will die tomorrow? He is allowed whatever makes him the most comfortable and happy because she will be able to give him very little for the rest of his life. She won't send him to college or cheer him on at soccer games. But she can give him cheesecake if that's what he really wants to eat for dinner.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now.  No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t. 

It got me thinking... and then of course a country song popped into my head. This happens a lot. My immediate thought was that song from Tim McGraw, Live Like You Were Dying, about a man who learned he had terminal cancer and all the adventures he took himself on were as though living that one day would be his last-- skydiving, Rocky Mountain climbing, riding a bull, loving deeper, speaking sweeter, giving forgiveness {he'd} been denying. And it ends with this kicker:

Someday I hope you get the chance, to live like you were dying.

Let's get real. I'm not ready to die. I wasn't ready for my son to die and I'll never accept that as being okay. I'm not ready to say goodbye to baby #2 either. I hope I don't have to, but I don't have a say in the matter. I have to hope and pray and wish and dream that this little guy will hold on and grow strong in his "safe place" (irony, anyone?) and we'll get to love on him forever. But we just don't know the future. It could be short or long and none of us are promised another day.

As the "dragon mom" in the article mentioned, she is choosing to love her son fully and take one day at a time. I am attempting to make this my goal during this pregnancy. I am so thankful and so lucky to have this little boy growing and kicking within me. But I know he may not be with me forever and I need to cherish the time we have with him however long we're given. Don't get me wrong; I'll be crazy and throw fits and be even angrier if something happens to this little gem, too, but I am choosing to spend my pregnant days just loving him. I feel as though I maintained that same mentality with Andrew, too, but I lost touch at some points when I was too busy planning a nursery, reading pregnancy books, and signing up for parenting classes that I didn't focus as much on the little joy growing within me. I focused on a life we never got and not on the child who mattered in the moment. I wish I'd written more down, taken more photos, counted his little kicks, talked to him even more. This time, I have no excuse. I am not planning a nursery. As a matter of fact, we refuse to take Andrew's name down from the wall or move a thing until this child is in our arms. We'll worry about that later. Right now, we love and bond and cherish each moment.

Dragon Mom has the right idea.

It's short. Read the article. Not just for moms or BLMs or anyone in particular. I think she has some wisdom that puts life in perspective. We could all use the reminder at times.

My Sentiments Exactly.

This article has been floating around the BLM circle. I am not re-posting for BLMs to read, but for those who haven't experienced this unbearable loss to read. I'll live this reality for the rest of my life. To say it's changed me as a person is an understatement. So honest, and unfortunately, so real.

Milwaukee Journal, October 6, 2011, Laura Schubert

Did you know that October is Pregnancy and Infant Loss Awareness Month? I'll bet not. Despite the infant mortality crisis that's been at the forefront of Milwaukee's public health news for months, the only people who have more than a cursory comprehension of what it means to lose a baby are those who've lived it.

Infant loss is nature's cruelest practical joke. It's investing all of the required time and effort into pregnancy, only to be robbed of the result. It's cradling a body that grew within your own and trying to reconcile the cold, lifeless form in your arms with your memory of the baby who turned double flips in your womb.

It's worrying that you'll forget what your child looked like and snapping an album's worth of photos that no one will ever ask to see. It's sobbing so hard you can't breathe and wondering if it's possible to cry yourself to death.

Infant loss is handing off a Moses basket to the nurse who's drawn the unfortunate duty of delivering your pride and joy to the morgue and walking out of a hospital with empty arms.

It's boxing up brand new baby clothes and buying a 24-inch casket. It's sifting through sympathy cards, willing your foolish body to stop lactating, clutching your baby's blanket to your chest in hopes of soothing the piercing ache in your heart.

It's resisting the urge to smack the clueless individuals who compare your situation to the death of their dog or who tell you you'll have another baby, as if children are somehow replaceable.

Infant loss is explaining to your 7-year-old that sometimes babies die and being stumped into silence when she asks you why. It's watching other families live out your happy ending and fighting a fresh round of grief with every milestone you miss.

It's being shut out of play groups for perpetuity. It's skipping social events with expectant and newly minted mothers because, as a walking worst-case scenario, you don't want to put a damper on the party.

It's listening to other women gripe about motherhood and realizing that you no longer relate to their petty parental complaints because, frankly, when you've buried a baby, a sleepless night with a vomiting toddler sounds something like a gift.

Infant loss is pruning from your life the friends and relatives who ignore or minimize your loss. It's recognizing that, while they may not mean to be hurtful, the fact that they don't know any better doesn't make their utter lack of empathy one whit easier to bear.

My baby girl would have been 5 years old this month. I don't know what she'd look like, what her favorite food would be. I've never had the privilege of tucking her into bed, taking her to the zoo or kissing her boo-boos. I will never watch her graduate or walk down the aisle.

Infant loss is more than an empty cradle. It's a life sentence.

Current List of Worries

Stuff most pregnant women never think about is all I can ...

1. Low grade fevers. This pregnancy I've had this twice and one of those times was last night. Cue the panicking, wet wash cloths, increased water intake, heat turned off, checking my temp every 5 minutes until it broke (over the course of two hours from 1am-3am), and no blankets.

2. Drinking water. We received a letter from our city that in August they tested the drinking water and traces of bacteria were found. Great, I've only increased my water consumption because I've been pregnant the entire time of this testing/realization. Don't panic, they said. Don't boil your water, they said. Don't stop drinking it, they said. Except when you know a good BLM friend of yours lost her perfect son to bacterial meningitis. We'll be purchasing large amounts of bottled water starting today.

3. Cord coiling. Looks like this baby also has an undercoiled umbilical cord. The perinatologist said it is normal and functioning, but definitely less coiled than he's used to seeing. Great. A little too close to home on that one since my first son died from an undercoiled cord being flattened in utero. Hello early induction date!?

4. Falling on ice. Winter is about to hit Chicagoland and we hear that we're going to be taking a beating. Know what that means? More black ice and more chances to fall on it. Looks like I'll be hermit crabbing it up inside my house for the next six months. Don't believe me? Winter really does last that long here.

On the good news front, this baby is developing just as he should and measuring a bit ahead in every category. {No surprise on the gender, btw. We've had a hunch since our 12w u/s that there were boy parts present.} There are no current health concerns or abnormalities to worry about at this time. If only I had the ability to hold that cord in place for the next 4 months, I totally would. Instead, I worry.

Chicago and GRASS

Ever since I gave up facebook, I've discovered Pinterest. It's not new, but I'm now a big fan. I follow some pretty fantastic people like Brooke and Alli. They pin crap I like and then I share it with you. Like this, for example:

That's it. That's all we've got in this state. Chicago, and grass. I'm hard-pressed to find anything from my house to St. Louis that isn't cornfields and soybean farms. And it ain't pretty, either. You mean to tell me that I left Life of the Party for this place? Yeah, yeah, the husband is definitely worth it, I agree. ;)

Mostly I just pin food pictures/recipes because I'm a hoarder. But this, this is a keeper. I wish I were one of those people who could commit to a specific day of blogging about stuff. You know how people do those "Wordless Wednesdays" (which are never really wordless, btw) and stuff like that. But I'm not. Plus, there is no day of the week beginning with 'p' and I'd really like the alliteration to work out in my favor.

Fall Getaway to the East Coast

We're on another adventure. Ray has been in the D.C. area for work the last 2 weeks, so we decided to extend some of the meetings into a full visit. I arrived to join him Saturday and we spent 4 days with the Wilson clan.

It all started Friday morning...
I walked downstairs and bent over to grab my shoes. I did not bend my knees and while this is normally not an issue, it was this particular morning. I heard an incredibly scary pop sound and then stood back up. I have been in intense and excruciating pain ever since. The girls turns 29 and all of a sudden she's totally out of shape and unable to perform regular tasks. I suppose part of that could be attributed to my lack of flexibility because I haven't exercised since I saw those two lines on that pregnancy test. Well, a few random hikes and walks here and there, but nothing in the way of heavy cardio or weights. I'm just so intensely afraid that I'll move wrong and hurt this critter. It's totally irrational, but I can't help but feel this way. I'm over halfway at this point, so I guess there will be time to worry about all the lbs later.

I digress. I somehow managed to get on a plane Saturday morning to fly to Reagan and met up with my husband and my in-laws. We then headed over to dinner with Ray's lovely grandparents and his Aunt Helen and Uncle Mike. They gave us some beautiful Andrew gifts... but I'll have to display those in a different post as I'd like to take a few photos that haven't yet been taken since the gifts are packed away in my luggage. I can't tell you how wonderful it is to have my son remembered and loved by family. It truly means everything to me. Unfortunately, pain continued. I was laying on my back before and after dessert-- which was carrot cake and my favorite peanut butter swirl ice cream!

Sunday meant church and a lovely brunch and performance of Chicago at a local dinner theatre in the Baltimore area. I'd been there once before about 5 years ago when I made my first trip to MD to meet the family! Now I'm definitely part of the family... so a much different trip. Saw my beautiful SIL, but otherwise winced in pain the entire show as Ray would apply pressure to my back every few minutes.

Monday was a day of relaxation and two chiropractor appointments. I would normally never visit a doctor in another state, but I simply could not take the pain any longer. It was to the point that I'd go to bed for 12 hours and spend most of the days laying on my back. He was really nice and gave me a neck adjustment (ouch) along with using some strange vi.brating torture tools. I also sat on a moving massage bed for 20 minutes. I left feeling 100% unchanged. Five hours later, I was back. This time, I pinpointed exactly where in my upper back felt the most shooting pain and he gave me yet another neck adjustment along with more torture tools. I was so terrified during this process as I'm pregnant with a critter who was probably being shaken, too. Luckily, the pain was occurring in my upper back and not my lower back. But when you've lost one child, you pretty much assume only the worst can happen since there is intervention involved. I left feeling about 20% better. Throughout the rest of that night and the next day, it progressed to 50% pain. That night we went to visit a friend who coaches soccer for Ray's old high school. We didn't actually get to hang out with him, but we watched the JV and Varsity games of his Alma Mater.

Tuesday, the four of us headed to Mt. Vernon in Alexandria, VA. It was a lovely day and perfect for our visit. I'd never seen Washington's home, so it was really great to visit. I always find it so wild that Ray grew up less than an hour from the White House, Pentagon, and the heart of D.C. So much history, including battlefields, were literally his backyard. We took a walk in Downtown Alexandria and enjoyed dinner at the Columbia Firehouse off King Street.

Currently, I'm sitting in our hotel room that Ray's parents dropped us off at last night after our dinner. I spent some of the morning walking around town and had lunch at this pita joint... totally underwhelming. Yelp definitely let me down on that one.

 My walking lunch of mediocre ingredients.

We'll be having dinner with some of Ray's colleagues this evening and will be heading out tomorrow around dinnertime. I love getaways with my husband! Thankfully, too, this litter critter has been moving quite a bit since my little chiropractic experience. We had one scare where we both nearly lost it when I hadn't felt its movements in awhile. Of course no one will be able to talk me out of thinking that it's now brain-damaged, but that's the psychosis of a pregnancy after loss. I respect all you women who have crossed this road before me. There are no rules and no way anyone can guarantee things will work out. I guess that's the reality of life. None of us have any guarantees about anything and life is just a precious and fragile thing.

Guess who's flying first class tomorrow? Don't get used to it, child. Mom and Dad are definitely too cheap to be spending the G's on upgrades like this! Just worked out this go-around.