Monday, June 23, 2014

Pink for Paul!

 
 
From time to time, we here at Sisters by Heart are approached with fundraising ideas, ways to generate awareness about HLHS and support Sisters by Heart at the same time. We are always so touched and honored when heart moms choose to support our efforts. We were recently approached with a new fundraising idea, borne out of one mother's unique way of showing love for her special HLHS son, Paul. We were so touched by her story, and thrilled to participate in this fundraiser, Pink 4 Paul. This is Paul's story, as told by his mother, Colleen. Please be inspired along with us, and read on to hear how you can support Sisters by Heart and go Pink 4 Paul this summer.

No one teaches us how to grieve. There are certain theories, support groups, quotes and passages that are intended to guide us and for some they provide solace and a road map and for others they provide simple words of encouragement. I think society has a need for people to hurry up and get better in the face of all different types of issues. People have a tendency to rush to support folks in immediate crisis- think of all the casseroles the day of a funeral but in aftermath, the days and weeks and months that follow, we tend to expect people to move on with their lives and resume normal functioning. After getting an HLHS diagnosis I was supposed to go through the Norwood (hard) get through the Glenn (easy) and then resume normal functioning until the Fontan. I wish I was one of those people who immediately became better and gained amazing life perspective in the face of life-threatening illness but I was not- I am not. That does not mean that who I am at my core and what I value deeply has changed it just means that in spite of myself I can get really worked up when it comes to HLHS.

For me, things went like this: I was happy, in denial and a little bit information crazy when Paul was first born. A few months in I was mad. His Glenn was supposed to be easy and it wasn’t. I was supposed to feel better about everything and I wasn’t- I was feeling…WORSE. More sad, more anxious, more in the weight of this diagnosis than ever before. I was sort of in a fog with little glimpses of hope during Paul’s first year of life. I checked his oxygen saturations constantly, we went to the doctor all the time, I researched vigorously for a cure, for someone- something to make it better. I got irrationally mad at our doctors and had moments of total denial. Looking back I can see this was all about grief- RAW grief. My little boy has a very different type of heart and there is no denying it. A shift happened in our family that caused my husband to be home with the kids much more. He was running the ship with me and he did it very differently that I had.

My husband is the coolest guy I know and has an amazing calm to him. He has the ability to compartmentalize in a healthy way like no one else I have ever known. That’s a good thing since I have almost every feeling all the time  He taught me in the last year to see Paul as a little boy with a special heart, not as a ticking time bomb. He helped me see the forest for the trees so to speak. He helped me get through the fog in a way where the moments of joy started to over shadow the moments of panic. He didn’t sit me down and say “Colleen you should be feeling differently.” He just SHOWED me that parenting Paul was about parenting a little boy mostly and a heart kid sometimes.

Grief…What a word. Grief is an emotion that I will never lose in the face of HLHS but it is an emotion I have learned to manage. Here’s what I know right now- we have a beautiful two and half year old that can count to ten, knows most of his letters, is highly opinionated and really likes buddy fruit. We welcomed a little girl, Georgia Jane, on Valentines Day of 2014 and she is the queen of our little castle. Her heart is not perfect either, by the way. She has bicuspid aortic valve a very minor CHD but common for HLHS siblings (talk about re-visited grief but that’s a whole other blog). She is a sweet little ginger and Paul LOVES her. I fall more in love with my husband every single day. Our marriage is surviving and thriving in the face of this grief. It hasn’t been easy but we are making it, together. I have some amazing life long friendships because of HLHS and get to serve so many families by sitting with them in their pain and their grief when its needed. I am still who I was before HLHS. I have a huge crush on Gavin Degraw, get to work doing research for a lovely and highly patient company, I love to sing and dance, and I get an unhealthy joy from starbucks lattés and am a sucker for Lifetime television.
 

I wrote this blog about two years ago and I still mean every single word. The HLHS community is a beautiful place to unintentionally bloom. It has been a gift and gorgeous blessing to know these children and families. I love them as my own and follow their journeys with a lot of hope.

One of my best friends in the world is named Diana. Her little boy Jude is the first HLHS child I ever met. When I was pregnant with Paul, Diana and Jude and I met for coffee and conversation. I thought she’d arrive with a baby in a wheelchair on oxygen and IV drip; instead, she arrived with a big cheeked tow head with quite the personality. I fell in love with him and her that day and have been privileged to love them everyday since.

Most of you know that HLHS children appear “blue” pre-Fontan, especially in their fingertips and toenails. Diana shared an idea with me to paint my toenails blue when I was pregnant with Paul. She had done it for Jude, citing that as long as his toes were blue, hers would be too. At that moment, before he was born, I made a promise to Paul that as long as his toes were blue, mine would be blue and I have kept that promise for the last 2 and a half years, painting my toenails with every blue polish there is.

Paul will have his Fontan surgery on July 28, 2014 and hopefully his fingernails and toenails will be more pink. To show support and to raise awareness for congenital heart disease, we are asking folks to go Pink 4 Paul!
 

 
Paint your toes and/or nails pink. Post your picture on our facebook page https://www.facebook.com/pink4paul or Instagram #pink4paul and share with a caption of support. We will read all the messages to him during surgery.
 

You can purchase pink specific nail wraps and polish through our fundraiser with Jamberry Nails Independent Consultant Jenn W, between June 23rd and July 6th at www.jennw.jamberrynails.com. We have also made custom wraps that you can purchase by emailing  JennWNails@gmail.com!! All proceeds will go to Sisters by Heart!

Custom Sisters by Heart Nail Wraps

This is the best way I know to place my grief. In the face of this upcoming surgery, I am trying to choose acceptance and synthesis as a means to get through this time. During the Fontan, I expect to grieve, freak out, yell, ugly cry, laugh and smile, and maybe I will enter the fog again. As sure as the sun will rise, I will get out of that fog-no matter what happens, no matter how long it takes, I will live and breathe again. I will not be paralyzed by grief forever.

I write often about the space between in life, the power of each other, and the importance of love without condition. Maybe this is my lesson…these are my lessons in this journey. Whatever your process, wherever you are, however you grieve it's ok and it will BE ok. Thanks for fighting for HLHS and for allowing me to be with you on your journey, and you on ours as we sit with grief; we have so much hope. Paul is proof that the quality of life for a child with HLHS can be amazing and I hope he continues to be that proof throughout the rest of his long long long life.

 
 
Dr Colleen Melchiorre is a researcher and retention specialist for Phired Up Productions, a speaker for active minds, and a Linked by Heart and NPCQIC research committee volunteer. Her most important purpose in life is being a wife and mother. Her families' HLHS journey is chronicled at paulsheart.doodlekit.com

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Previous Blog Posts

Tuesday April 21st, 2017: Parent Scholarships NPC-QIC 2017

Monday, August 8, 2016: On Finding His Tribe

Thursday, November 19, 2015: You're the General Manager

Monday, July 20, 2015: Fontan Care Package Launch

Monday, June 8, 2015: SBH Supports Full Transparency in Outcomes Data

Wednesday, May 6, 2015: New Care Package Items

Wednesday, April 29, 2015: A Tea Just for You: Heart Mom Comfort Tea!

Monday, March 2, 2015: Parent Travel Scholarships - NPC-QIC 2015 Spring Learning Session!

Tuesday, February 17, 2015: NPC-QIC/SBH Response to HLHS Statistics Shared by the CDC

Monday, February 2, 2015: Fundraising with Heart: Tink & Key

Thursday, January 29, 2015: January 2015 NPC-QIC Action Period Call Update

Wednesday, January 28, 2015: Fundraising with Heart: The Baby Blue Sound Collective

Thursday, December 18, 2014: Sharing HOPE: An exciting opportunity

Tuesday, September 30, 2014: HLHS Collaborative: September's Action Period Call

Tuesday, August 26, 2014: Parent Travel Scholarships - NPC-QIC 2014 Fall Learning Session!

Monday, August 18, 2014: CHD Kids and School Special Services

Monday, August 11, 2014: Using Crisis to Create: The Asher James Foundation

Wednesday, July 2, 2014: HLHS Collaborative: June's Action Period Call

Monday, June 23, 2014: Pink for Paul!

Friday, June 13, 2014: Why There are No "Brothers by Heart"

Tuesday, May 13, 2014: What If...

Wednesday, April 2, 2014: HLHS Collaborative: March's Action Period Call

Wednesday, March 5, 2014: HLHS Collaborative: February's Action Period Call

Saturday, February 15, 2014: Shopping for a Cause

Thursday, February 6, 2014: HLHS Collaborative: January's Action Period Call

Friday, January 17, 2014: Research Opportunity: Prenatally Diagnosed Moms Need Apply!

Monday, January 6, 2014: HLHS Collaborative: December's Action Call

Friday, December 27, 2013: Dual Perspectives: Growing Up with HLHS

Wednesday, December 4, 2013: Take Action: Be Part of the Solution

Tuesday, December 3, 2013: Join Millions for #GivingTuesday

Monday, November 18, 2013: A Mother's Perspective: The Other Sibling

Wednesday, November 6, 2013: A Unique Opportunity with What to Expect

Tuesday, November 5, 2013: Time to Vote!

Friday, November 1, 2013: 2nd Annual Sisters by Heart Avon Fundraiser

Thursday, September 12, 2013: Possibilities: Cord Blood Banking

Tuesday, September 3, 2013: A Unique Partnership

Tuesday, August 6, 2013: Fontan Series: Kylan's Story

Monday, July 22, 2013: Fontan Series: Lily's Story

Monday, July 15, 2013: Fontan Series: Aly's Story

Monday, May 13, 2013: A Heartfelt Donation: Medical Masks in Anya's Memory

Monday, April 22, 2013: Parent's Perspective: What to Pack for the Hospital

Thursday, April 18, 2013: Getting a 2nd Opinion: An Inpatient Perspective

Monday, April 15, 2013: Getting a 2nd Opinion: An Outpatient Perspective

Saturday, February 9, 2013: It's February, Celebrate Black History Month!

Monday, February 4, 2013: A Heartfelt Donation: eBay Foundation

Friday, February 1, 2013: A Unique Collaboration: SBH and the NPC-QIC

Monday, January 28, 2013: NPC-QIC Winter Learning Session

Friday, December 21, 2012: A Mothers Perspective: Feeding issues

Wednesday, December 5, 2012: A Heartfelt Donation: Smart Mom Jewelry

Sunday, November 18, 2012: Heartfelt Donations: aden + anais and The Dorsett Family

Tuesday, November 13, 2012: Gifts from the Heart: Stella & Dot

Monday, November 5, 2012: Creative Donors: United Way Workplace Campaigns

Sunday, November 4, 2012: A Mother's Perspective: Healing a Hurting Marriage

Sunday, October 28, 2013: A Heartfelt Donation: Avon

Saturday, October 27, 2012: A Gift for Our Fighters

Monday, October 15, 2012: Stories of Hope: Tyler Sajdak

Monday, October 8, 2012: A Heartfelt Donation: The Mended Heart

Monday, September 24, 2012: Fun in the Sun: Year Two

Sunday, September 16, 2012: Creative Moms: Warrior Scrapbooking

September 11th, 2012: Remembering Our Heroes

June 6th, 2012: Top Ten Discharge List