While we were in the hospital with Laura, sharing her story sort of seemed like the least important thing in the world. We texted our friends and family throughout the process but otherwise, most people were out of the loop. We did not post anything on social media or other similar places. I did not start this blog until Laura was out of the woods and doing quite well.
Not sharing our story as it unfolded was important to us for two reasons:
- We were busy enough dealing with Laura’s chaos and didn’t need the extra responsibility of keeping everyone informed.
- We didn’t need the world feeling the disappointment and heartbreak that we did on a daily basis. Second-hand trauma is real and we didn’t want to do that to anyone other than those who needed to know (our parents, siblings, etc).
Saying this, I took great comfort in reading the stories of other parents who had endured similar hardships. I follow the journeys of many kids who are on the same path as Laura and I love to hear about how they are doing in real time. Sharing news as it happened wasn’t right for us, but it is healing and therapeutic to many others.
Once Laura started doing well and we seemed to be at the end of our very long battle with CHD, sharing Laura’s story became an important part of my life. Laura has endured so much and so have we and the rest of our family and I feel that her story can help bring comfort to others facing similar situations.
When things are looking their bleakest (such as they were in Laura’s story -Part 5- the darkest hours and Laura’s Story – Part 11 – the darkest hour – part II) there is always hope. We are so fortunate to have faith in a God “who is able to do immeasurably more than all we ask or imagine” (Ephesians 3:20a). We were given such strength through our faith while we were experiencing the darkest times of our lives.
Since arriving home with Laura, I have had the chance to ‘meet’ many other moms who are facing very similar battles through the magic of social media. Raising a child is hard enough, but raising a child with a heart defect or living with a heart transplant puts us in a category all our own. Most days, Laura is a completely normal, crazy toddler. On the days when she is less than normal though (neutropenic, fever, spitting out meds, etc) I am so very thankful for the support that I receive from these fellow moms who know exactly what I am talking about.
As a part of the Salvation Army, having Laura’s story featured in the March edition of the Salvationist was a big deal for me. Not only did I get to see one of my favourite pictures on the cover of a magazine, but I was also able to share the strength that we received from God throughout our journey. I have heard some beautiful stories as a result of this article including one from a wonderful man who had a heart transplant in the 90s and is still going strong with no problems!
We have many battles ahead of us but our sincere hope is that the toughest is behind us. We will face anything that comes head on but for now, Laura is happy, healthy and growing like a weed and there are days where I almost forget that she had a heart transplant at all!