Tuesday, July 15, 2014

Happy Birthday Capri

Everyone tells me that the first year with your heart baby is the hardest.  once you make it through that the rest is smooth sailing.  Well we made it to that sacred day.  We spent the day in our pajamas, watching movies and cuddling.  It was quiet and uneventful.  Ive had a hard time keeping my emotions in check lately.  I get overwhelmed with the thought  that there is not a "finish line"  not a surgery to fix everything and then she is better.  This is her life now and we will always have the fear of heart failure, the fear of SVT, the fear of aspirating.  This is our normal.  I lay awake at night and watch her monitor go from 95% oxygen down to 80% as she falls asleep.  Her doctors have told us it is time to put her back on oxygen every night now.  I want her to get better. not worse.  this isn't how it is supposed to work.  I cant just watch her go back into heart failure.

We had Capris birthday celebration a week early so that we could spend her actual day at home.  It was the perfect first birthday!  My wonderful friend Brooke donated everything from her party rental store to make it memorable.  We had a popcorn machine, a slushie machine, carnival games tables with beautiful linens, a canopy with a face painter and balloon animal maker.  The park was filled with our friends and family.  We ended the night with an amazing firework show that had the whole neighborhood out in their yards to watch.  I am so grateful for all of my family who drove the 7+ hours to help us celebrate and then did all of the setting up/cleaning up so that I could visit with friends and enjoy Capris birthday.  We also received a cake from "icing smiles" a non profit organization that has bakers donate their time and supplies to make cakes for children with life threatening illnesses.

We asked that instead of presents that people do a random act of kindness in capris name.   We have been so beyond blessed with the financial support of friends and family that we wanted to give back.  That is something that I haven't talked a lot about in the blog.  Not because I am not grateful I assure you I am, I just don't know how to find the words to thank everyone for such an amazing gift.  When we planned our fundraiser to help us get to mayo I was told by a friend that I was taking advantage of people and that there were others in the world that deserved help more than us.  I was heartbroken.  I have never had to ask for help from anyone before and doing that fundraiser was something that I had  struggled very much with.  We knew that on one income though we would not be able to afford the care that Capri needed so we swallowed our pride and accepted help.  Our fundraiser raised about half of the money we needed while we were in mayo (not including medical bills).   We were so grateful for all of the people who had supported us.

Then while we were in Minnesota person after person wanted to help.  I told them we were ok and that people had already done enough for us.  They did their fundraisers anyway and changed our lives.   Between the medical bills, the 12,000 miles mike and I put on our cars driving back and forth to PCH, hotel rooms, food ect we would be filing for bankruptcy without everyones help.  Instead we were able to pay all of Capris bills, not worry about the drive to the hospital, or eating at the cafeteria.  We were able to pay off several of our bills that freed up money for us to start saving for capris next surgery and our future.  We even had enough money to each buy something for ourselves. So thank you.  Thank you for caring about my daughter and helping us.  Thank you for bringing us up and holding us as we were falling apart. I will never be able to desbribe to you how much that means to us.

 our wonderful pediatrician.  how many drs show up to their patients birthday?

  We have spent the month paying it forward and have loved every second of it.  From buying peoples groceries, to leaving encouraging notes.  to making meals for the homeless and helping out other moms in need.  You all have helped me become a better person and I will forever be grateful.  There is not a day that goes by that I don't think about all of you and how blessed we truly we are.