After Hope was diagnosed we found out about 'Sisters By Heart', they are a support group for parents of children with HLHS. They sent us a care package of supplies that we would need in the NICU for Hope and offered a lot of advice for the road ahead. Many of the things in the package were donated by parents who had lost their children to HLHS. I follow their blog and was touched to see a blog about a mom who lost her little boy, Jack Ryan, to HLHS in 2008. She has made and donated blankets for the NICU that are the perfect size. Hope was a lucky recipient of one of her blankets and after reading her story, I hold that blanket as a more precious gift. We also received Baby Legs, these are leg warmers for Hope to keep her warm while she can't have pants or sleepers on. The company http://www.babylegs.com donated these to Sisters By Heart as well. I emailed them to thank them for being so generous and caring about the organization. They emailed back and said that they have sent me a package with some larger ones for Hope's future surgeries! Seriously? I am amazed that companies care about our baby and don't even know us at all.
Another amazing gift came from Paper Blanks. If you have never used one of their journals, I recommend you get over to Chapters and pick one up. These journals have nice thick pages, lay flat so you can write on both sides and are usually very beautiful to look at (www.paperblanks.com). I find that investing in a nice journal, gives me the desire to sit down and write. After journaling one night, I emailed them and thanked them for making such an awesome product that was truly a form of therapy to me currently. A lady from the company emailed me back and simply said that they were glad I enjoyed their product and wanted to help me continue in my journaling by sending me 3 of them in the mail!! Really? I thought only Ellen or Oprah did this sort of thing. Now I can sit at the Fairmont in Jasper in 3 weeks and enjoy journaling, I have lots of empty pages to fill. It almost feels like God has rolled out a red carpet, I'm nothing special to the world and yet I seem to be treated as though I have a gift of some kind.
Getting our mail has become an enjoyable activity. I have always loved mail and have a few friends that I continue to correspond by snail mail with on a regular basis. Since Hope's diagnosis, the mail has become more exciting and I am surprised at times by the people who take the time to write an encouraging word and send it our way. What a blessing to see the return address of someone you haven't seen in years, it is with true joy that I take in each one of those cards. They are precious to me and I keep them so that one day, Hope will know how loved she is, even before she was born. Friends from afar have sent gift cards to provide us with dinner when they weren't able to make something. Shawn and I use these cards to go on dates and allow Sadie's grandparents to have a date with her! It's truly amazing to see the creativity and thought that has gone into some of the things that have shown up on our doorstep, all of them precious and completely valued.
Thank you has truly lost it's value, it seems like such an easy thing to say and we hear it from so many people that it has lost its effect. I don't know how to express in words how completely humbled and truly thankful we are to the thoughtfulness of so many of you. It means so much and as my mom likes to tell me, "it's God putting little post-it notes of encouragement into my day". It truly is, when something like this happens, it changes the course and attitude of my entire day, even my week. Thank you for providing us with such precious gifts; words of encouragement, gas, food, toys for Sadie, clothes for Hope and even a relaxing massage for me! You all know who you are, but I wanted to tell you all again, how much we need you and are so thankful for you.
Two weeks from today we'll be in Edmonton to meet with all the doctors, we look forward to our questions being answered. We also dread the reality of our situation sinking in further and facing a truth that is just around the corner now. We know that we are not alone, the people that surround us are incredible and there are people who read this blog that I may never meet. For each of you, we are thankful, we can only hope to meet you one day and introduce you to the little girl that stole a piece of your heart as we fought to keep hers beating.
|The first time we saw Hope, before we knew about the struggles that she would face.|