Friday, February 28, 2014

Beads of Courage

Judah spent almost 7 months in the hospital after being born and before we were finally able to bring him home. Children's Hospital of Pittsburgh, and many other Children's Hospitals around the country, participate in a program called Beads of Courage, where the patient receives a bead for every poke, every test, every doctor visit, every night spent, every machine they are hooked up to, and so much more, as a way for the child to understand and cope with what is going on. These beads are a memento to the kids, a memory of everything they've been through.



If you were to lay out Judah's beads end to end they would stretch to over 35 feet in length, and his acts of courage, as well as his bead collection, aren't slowing down anytime soon..



One day, these beads will help us tell Judah the story of everything he has been through. They are a badge of honor, a keepsake, and a story told in a way words cannot describe.

Tuesday, February 25, 2014

A small token.


 My husband is a sentimental creature, though he would never admit it.

As time has passed, with each hospital stay, I continue to curse myself for not remembering to keep every one of Elliott's hospital bracelets. Elliott has had seven hospital stays and three additional ER visits (not leading to an admission) that awarded a bracelet and the only one I still cling to is his very first, a teeny, tiny bracelet worn on his birthday. Each time I snip one off his fat little ankle I think, I should keep this. Mementos from each visit. He might get a kick out of it someday. Even still, into the trash they go. In a way, I am ready to toss the memories of stress, pain, and worry each hospital visit has gifted me into the trash too.

And yet, for days after, my husband Taylor keeps his parent bracelet on to remind him of everything we've been through at each stay. Harkening back to his youth, his music festival days where he wanted to relive the magic of music and camaraderie, he hangs on to each bracelet for several days, sometimes weeks, as a way to ground himself. 

To remind him of who his son is, a special little soul. A badge of heart fatherhood.

To remind us that even though we've been through so much stress, pain, and worry as a family, we are stronger because of it. A keepsake of our battle.

He wears each bracelet proudly, and I truly love him for it.

Thursday, February 20, 2014

A Smooth Sea Never Made a Skilled Sailor

Judah adores other children. He loves to see the other kids playing in the waiting rooms of doctor's offices. He loved Baby'n'Me music time at the library, when we were able to go prior to October.



Unfortunately for a social butterfly like Judah, we are mired in a nasty winter with terrible weather and his high infection risk. Judah's heart condition makes it harder for Judah to fight off infection, and his trach makes it very easy for Judah to become sick.

We, like many trach families, have to become hermits during flu season.

Now, I'm not the most social of moms - being a hermit is not that difficult for me. However, Judah really loves the company of kids, and adults - pretty much anyone that he makes eye contact with. He's stopped nurses and strangers in their tracks, just to come over and smile at him and tell him he's adorable. We've been trying to teach Judah sign language, and he's picked up a few words. But without any urging on our part, his favorite word is now "baby". We look forward to springtime and being able to play with other kids again without fear of germs and viruses.

We are incredibly lucky to have connected with a heart-friend in Lynne H. Lynne is actually nearer in age to Nate and I, and is also a Truncus Arteriosus patient. This friendship has meant the world to me and Nate, and it is amazing to hear a firsthand experience of this disease. Getting to know Lynne is inspiring - to see this talented, intelligent and well-spoken woman, who has lived all over the world and is a fearless explorer - gives us hope that Judah will be able to do whatever he wants to do in his life. Judah's heart condition doesn't mean he should be afraid to do anything he wants to do.



We may be hermits this flu season, but as time passes and we grow and heal, there's nothing we can't accomplish.

Especially with friend like Lynne.


Tuesday, February 18, 2014

A surprise friendship.


When Elliott was six months old I got the shock of my life and found out I was pregnant again. I cried. These weren't tears of happiness, either. They were tears of worry, fear.  Months before that we were contemplating the question of when we would try for another little one but after the shocking news of Elliott's diagnosis and the mess of emotions that came with it, we were pretty sure we needed a breather from excitement. We wanted to settle in and get to know our son again, who we felt we were missing after several months of hospital food and tough decisions. Elliott must have been home only about a month when I got pregnant again, and after another month of feeling amiss I pushed aside my denial and got that dreaded (or highly anticipated?) plus sign on the pregnancy test.

And so came the tears. The tears for our finances. Tears for my sanity. Tears for my sleep schedule. Tears for Elliott and the fear that a new baby would pull me away from him. Tears of guilt for not initially wanting this pregnancy. Tears of worry over the new baby's heart health.

Eventually, all that fear dissipated. What I knew more than anything was that Elliott needed this new baby. We all did. A new baby to remind us that we were a family, in a home vibrating with creativity, strength, and love and not just some statistic, some burdened couple with a sick child. Elliott needed a peer, someone on his level, to ground him and encourage confidence in a way my husband and I won't be able to in hard moments.

Our baby girl Penelope was born this last October, and I can see it already. That bond between the two of them, like they're already whispering secrets to each other. He loves to give her kisses and hugs, and she only has eyes for him. It is my deepest hope they will always have each other, that their love will grow deeper by the day. It is my hope that she will be his sweetest best friend.

Sunday, February 16, 2014

Aware

February 7th kicked off CHD awareness week. As a family we wore red... red to spread awareness for a very big, but little known cause. I was so happy to see how many people participated and spread the word.
This time last year I was completely unaware. This time last year I never thought it would be us that would have a baby with a heart defect. This time last year I had no idea babies fought so hard every day and that this lifelong battle was VERY real. This year I feel like I've seen too much, but I'll never know enough.

Monday, February 10, 2014

Eyes wide open.



Kids with CHD are diagnosed at all different times. Some are diagnosed safe & snug in their mamas' belly during the 20 week ultrasound, some are diagnosed shortly after birth. Some go home only to be diagnosed with their CHD weeks later, even still some go undiagnosed for years. Elliott Wilde was diagnosed two days after his eight week birthday. I'll always remember that day; the day my world as I knew it came crashing down.

I remember in those weeks before he was diagnosed that I would lay wide awake at night with him asleep in the bassinet next to me, terrified of SIDS. That something awful, explained, would happen and I wouldn't be able to stop it. I shook it off every morning when I woke; every feeding in the early, ungodly hours but when all was quiet and dark, I felt stricken with a fear I could not shake. In those days I was naive to the term Congenital Heart Defect, unaware of the statistics. But in my heart of mama hearts I knew something wasn't right.

It's CHD Awareness Week, and looking back, I am angry I didn't know until he was 8 weeks old. Elliott was different from the moment he was born and after several visits (or what felt like several visits) to different doctors to ask, why is he so sleepy?, why is his cry so quiet?, why is he breathing so fast?, I still had to wait for that ride in the ambulance and watch a breathing tube being shoved down my sweet boy's throat to hear the news. 

Really, I am fortunate for that ambulance ride. Some kids go undiagnosed until it's too late. The sole reason that CHD Awareness is so important, in my eyes, is that awareness saves lives. Back when Elliott was born (a mere 18 months ago!) the State of California had not yet passed the bill for newborn pulse oximeter screening. Today, California babies are being screened and many other states are following suit. Awareness has made this possible. Awareness has saved lives. My eyes are now open. I am no longer laying in the dark, grasping for answers. This week, my heart beats for awareness.

Sunday, February 9, 2014

A scribbled heart

We sat across from the cardiologist as he grabbed a piece of blank paper from a drawer in his desk. I observed the look of concern of his face as he scribbled out a drawing of our sons heart. I looked over at my husband, who had tears welling up in his eyes. I had done the majority of my crying on the ultrasound table just minutes before as the tech clicked away and took pictures. 


The cardiologist explained the severity of the condition and drew out statistics and the names of the three staged surgeries on a separate piece of paper. We had received the news only a few day earlier. We knew something was wrong we just didn't know what. Our fears were confirmed during that appointment that our son had a very serious heart heart defect. It wasn't something that would be an easy fix and we were overwhelmed with the thought of the coming months and years. I'll never forget that day and being the sentimental person I am I folded that drawing in half and tucked it away in a box full of Elliott's ultrasounds. A simple drawing holds the memory of the day we received our sons diagnosis.

Have any of you kept a special drawing or ultrasound revealing your child's diagnosis? 

Friday, February 7, 2014

Whole Hearts

It takes a lot of love, medicine, surgery and pain to make some hearts whole.

Those little symbols just show up and you don't think anything about them. Shamrocks at St. Patricks Day, pumpkins and ghosts on Halloween

Hearts on Valentine's Day.

You don't think much about it. It was on the wall at school, on silly candies, it shows up at work... and really it doesn't mean much.

But it can.

Wearing a heart on your sleeve, or wearing red CAN mean something more than candy this week. It can show your love, understanding and awareness of a disease that affects 1 in 100 families.



Wear your heart with love.

Wednesday, February 5, 2014

Wilde at Heart.

Note: This post is a slightly edited version of a post from my personal blog in July 2013. When sitting down to write this post, I couldn't help but re-tell this story. I hope you enjoy it.

When I was in college, I decided that I would call myself a painter. I had a good friend that was very talented, and after dabbling in creative arts, writing, and crafts my entire life, this friend inspired me to break into the world of painting. I painted with any medium I could get my hands on, trying new things and learning as I went. I wanted to be self-taught, like many artistic greats we learn about in art history. I devoured books on Vincent van Gogh and took weekly trips to the art supply store to build up my stash of tools. I painted things that meant something to me, and while I probably wasn't very skilled, it was a very prolific time in my life.
 
Time went on. I graduated from college, got a full time job, and painted less and less. But during my period as a painter, I found myself fascinated by one subject in particular: the human heart. A tangible, beating drum inside our chest, the symbolic seat of our emotions. Keeping us alive, keeping our passions fed. I studied the human heart in many medium: oil, acrylic, collage, watercolor. My paintings were never anatomically correct but they were full with emotions that were buried in my chest. Most times my heart painting were intended for one person, my love, my then-boyfriend who is now my husband and the father of my children.
When our 8 week old son was diagnosed with a congenital heart defect, it suddenly became clear why I was so invested in the heart all of those years before. I was always intended to be a heart mom. While Elliott recovered in the hospital we broke all of my old paintings out of storage and filled his room in the Cardiac Unit with them. Nurses and doctors were floored that they had been painted 8 years or more before Elliott was even conceived. And there, in that somber hospital room they sat, radiating the love I had poured into them years before, I hope, to help my sweet heart baby to recover.
 
Lately I have been finding myself inspired both to spread awareness about CHD as well as to break out my paints again. I am finding that, more than ever, our talents can be used for more than just personal gain. In this case, wearing my heart on my (canvas) sleeve as a means to share my story. Our story. A story filled with love, triumph, challenge, and lots of heart.
 

*****
A piece I made for my husband on Valentine's Day, 2005

Sunday, February 2, 2014

Red is...

I sat down at the beginning of the week to write this post thinking it would be easy only to find it made me feel anxious. I decided to stop because the anxiety was getting to me and I found it hard to sit still. I went about the week as normal until yesterday when I knew I needed to hunker down and write. There it was again… the anxiety welling up inside me with no intention of stopping, overflowing until I couldn’t handle it anymore.

I had never thought about what the color red meant until this week and as February 1st quickly approached I remembered that this was the month. The month that exactly one year ago we found out about Elliott’s heart. It’s the month our lives changed forever and although everything is wonderful right now the pain and the emotion of that time still sits at the surface and creeps up on me when I least expect it to. So I thought… what is red?

Red is bold

Red is brave

Red is intense

Red is beautiful

Red is the warmest of colors

Red is a representation of life… the blood that flows through our body.

Red resembles love

… and the heart.
Before our knowledge of Elliott’s heart we choose the color red to pop against a pale gray for his special knitted blanket made by his Grandma. I remember wanting to pick a mustard yellow, but felt pulled towards red. Red was his color. We chose the same colors for his baby shower and incorporated the colors into his nursery. When I think of red I think of Elliott. I think of his bravery, I think of his beautiful story knit so perfectly together bursting with intensity and love.

And did I mention he looks stinkin’ adorable in the color red?!