Wednesday, October 14, 2015

Silly Socks & Jess

This is a shortened version of the story that I posted online in 2012.  I posted the link to a longer version which has more photos at the end of this note as well as the link in the last sentence.  

Having felt quite alone as a CHD mom for the first 12 years of Jessica's life, I went online in 2000 to see if I could find a support group for families with children with CHD (congenital heart defects).  I found on email support group through CHIN (Children's Heart Information Network) called pdheart. I told our story of how Jessica had endured 5 heart surgeries, 2 strokes and that there wasn't anything else that could be done for her except comfort care. Jessica’s health was declining and we didn't know if she would survive until Christmas. The members on pdheart embraced us and wanted to know how they could show their support. It was a tradition on that support group to wear Christmas Socks for a child when they were going through a hard time so people all around the world started to wear Christmas Socks in Jessica's honor. The word spread like wildfire and to our amazement within a couple of months there were over 12 countries and at least 5,000 people wearing Christmas socks (or Hanukkah socks) as a way to show of their love, support and prayers. Jessica started receiving mail from all over the world as well. She LOVED the attention of course.

Christmas came and Jessica seemed to have improved a little. We enjoyed time with family and were so thankful for all the support. After Christmas was over I started receiving emails from my new-found friends asking what type of socks they should wear next! Soon Valentine's Day socks, Easter socks, Summer socks, polka-dot socks, and even toe socks were being sported around the world in hopes that Jessica would meet the next holiday and the next. After a while everyone started referring to them as "Silly Socks". 

There were many times that Jessica was at death's door and would come back to us. She had many issues including extreme heart arrhythmia, worsening congestive heart failure, bouts of nausea and worsening abdominal pain. She was diagnosed with Ischemia of the Bowels which is a very painful and terminal disease if surgery isn't possible and unfortunately for Jessica, there was nothing that could be done. In 2004 Jessica was placed in hospice due to daily lung bleeds. During that time loving people around the world were praying for and wearing their Silly Socks for Miss Jess. Jessica's hospice nurse took a shot in the dark and recommended morphine therapy to Jessica's pulmonologist and to everyone's amazement the lung bleeds STOPPED!!! 

During all of this Jessica continued to be as happy, loving and giving as she could be. Due to strokes, lack of oxygen to her body & brain (her whole life) and the diagnosis of DiGeorge, sweet Jessica never progressed beyond the level of a 7 - 8 year old. She was always our "little girl" who loved Barbies, princesses, Harry Potter, etc. 

In the summer of 2010 Jessica was nearing the end stages of heart disease and the ischemic bowel disease so we admitted her into a home hospice once again. When I announced the news to our friends on pdheart & other support groups, facebook and other social media, they once again rallied together to wear their Silly Socks for her - not for her to get better, but for her passing to be peaceful and for strength for our family. 

Our dear, sweet, beautiful Jessica Marie went to be with the Lord on October 4, 2010. TEN YEARS after the first Christmas & Silly Socks were first worn on her behalf.

I don't believe that certain socks have any particular powers but what I do believe is that God hears and answers prayers. Friends, family, church members, fellow heart families and even strangers all around the world from all walks of life, all faiths and even self-proclaimed atheists came together on behalf of one sweet, innocent, loving child. The miracle wasn't for her to be cured, but it was to bring all these wonderful people together for a good cause.  Thank you to all of you who have been such a wonderful support to us in the past and who continue to wear their Silly Socks & send messages of support.   

Every year on Jessica's birthday and angelversary we have a Silly Socks FB event where people share photos of their Silly Socks in honor of Jessica and to show their love and support for our family.  Jessica’s worst fear was that she would be forgotten.  “Oh, my dear sweet girl, how could you ever think that anyone could forget such a strong, courageous, loving child as you?”  We’ve met so many people since her death who have never met her who can still feel her legacy of love, hope and faith!  Jessica's quote, when I asked, “What would you want the world to know?” and she immediately said, “Tell everyone that I said to NEVER GIVE UP!  OK, Mommy?  You need to tell the world that I said to NEVER, EVER GIVE UP!”  NEVER give up HOPE!  NEVER give up FAITH! And NEVER, EVER give up on LOVE.

Here is the link to the original story that I posted in 2000 and edited in 2012.  It has photos from that first Christmas the socks were worn (2000).

Wearing Christmas socks:  L-R
Jessica's Aunt Alice (only one foot in photo), her Aunt Mandy, Jessica (herself -purple pants), her Aunt Karen and me - the Mom  

To read more about Jessica's CHDs (Congenital Heart Defects) click here and here. To learn more about Jessica's 5 heart surgeries please click here 

Thank you for stopping by!

Friday, October 09, 2015

5 Year Angelversary & CCHD Conference

I hope you all will bear with me. Jessica's angelversary was on Sunday but I am still having difficulty accepting that it's been 5 years since I held my beautiful, amazing, sweet, loving daughter Angel Jess. The pain isn't as raw as it used to be and I am able to focus on other things but sometimes it feels like an eternity until I get to see her again. Since my presentation at the CCHD (Critical Congenital Heart Defects) I have felt my girl pushing me to share more of her story. There are many amazing stories that I haven't put into writing and I've been too grief-stricken to write about them but since my presentation I've realized how important it is for her story to be told. Jessica's legacy should be shared so that it can live on. She was the most brave, amazing, determined, loving, generous, miraculous "little girl" I'll ever know and I'm soooo grateful that I get to be her mom for all eternity.

I was touched by the concern of the doctors, nurses and midwives who attended and it was great to see one of Jessica's peds cardiologists again. After the presentation he told me that Jessica was a pioneer. It was because of mine & my husband's decisions to have her go through certain surgeries and procedures that many CHD children are benefiting from having them available now. Jessica was the 9th child to ever have the surgery called "Unifocalization of the Collaterals" in all of the US. At the time it was the only hope for Jessica of ever receiving her complete repair. Sadly it did not work for Jess but it is saving lives every day now. They do the surgery at a much younger age now but it wasn't available for Jess until she was 5 years old.

I also had to fight the school district for them to honor Jessica's DNR (Do Not Resuscitate) orders. After over 2 years, I was able to talk to the legal team and we came up with an agreement that DNRs would be honored if there was an Emergency Plan. Believe it or not, it came down to me that someone on the Board of Directors said, "We're not in the business of having dead children on campus". That was the reason they didn't want to honor the DNR orders. They were worried that an ambulance wouldn't take her to the hospital if they didn't start CPR. I found out that they would so that helped my case. Jessica earned the right to die peacefully. Besides, her heart was enlarged so if they started compressions it would only damage her already compromised heart and if they did mouth-to-mouth (as it was done back then) they would have to take off her oxygen so that would have been doing more damage than good. As I was telling this story I held up the original "Emergency Plan" that was the first one ever to be done in the school district. Since then both Karl and I have met people who have thanked us for setting it into place because they had children with DNR orders too.

I had the opportunity to talk to the person in charge of newborn screening in all of Arizona and I shared a flyer that was sent to me by Hazel Greig-Midlane from the UK (THANKS AGAIN!) and we are going to work together to create one to send home with every mother of a newborn baby. The flyer lists all the symptoms that a baby with CCHD - Critical Congenital Heart Defects - would have. Oh how I wish I had had one to put on my fridge to help me know that my daughter was in congestive heart failure. Jessica almost died because I didn't know she was dying. We were told numerous times that if we hadn't brought her in that day she wouldn't have survived through one more night.

This is why CHD & CCHD Awareness is so important. We need to save the lives of babies with CCHD by educating new parents about them. Far too many parents don't know the symptoms and aren't as fortunate as we were. We almost missed out on the best 22 years of our lives with Miss Jessica Marie. We are forever grateful for those years.

Many of you have told me that you miss hearing stories about Jessica and I think I am finally ready to start writing and sharing those stories. Thank you all for your continues support and love. <3 span="">