Friday, August 19, 2011
I am numb. I am crushed. I am hurt. I am torn. I am so very sorry. My cousin, Amanda, lost her 9.5 month old Wednesday to cardiomyopathy. Jenna had an enlarged heart. She was too sick to receive a heart transplant and she grew to weak to keep fighting. After a very strong 6 week fight she just could not fight no longer. My heart breaks for my cousin. 14 months ago, I was planning a funeral for my son (with tons of help from my dad). It was heartbreaking for us and we had never "met" Ayden. I never held him. Never felt him breathe. Never played with him. Never seen him smile or giggle. Amanda seen and heard and felt all of those things. I can not imagine how tough this is on her. She lives in Indiana and we are in Wisconsin. She is coming home Monday and I can not wait to hug her. I can not get her off my mind. I keep thinking how unfair it is. But in the same sense, Jenna is at peice. No more tubes and wires. No more struggling. O how I wish that sweet baby could have gotten a transplant and this ending was so different. Watching your child struggle for over 6 weeks and then have this ending is so unbearable. I have a friend, Karen McGlin, who lost her daughter in March to cancer. She is such a strong woman! She looks at things from the positive side. I dont know how she does it, but she puts me in my place so to speak. Stop thinking negative and start looking at the good of the outcome. Her and her daughter, Kylee, have left such a huge footprint in my life. I never got the pleasure of meeting Kylee, but if she was half the little girl her mom is, I know she would have been wonderful, amazing, caring, loving, and courgeous. I am blessed to have her in my life.
Sunday, August 14, 2011
The end of May, I created a NICU group for all familes who have ever used the NICU Brielle was in. I have been struggling with the loss of Ayden and the preemie side of Brielle and having another baby. I felt it was important to me to have others around me how "get it." So I started a group on Facebook and it is currently up to 118 members and grows daily! Two moms who were also in the NICU that I have become friends with, Tracey and Nichole, helped me organize a NICU family picnic. The picnic was today! It was very successful! We had 140 people RSVP. We had "Care bears" that passed out tattoos and band aids that said stuff like "Stuck on a miracle." "I *heart* Dr. Debbie" (Since one of the Drs (debbie) came today) "Preemie proud" "Nurses rock" etc. We had 2 bouncy houses, tons of food and great conversation sharing our stories with others. We had a scrap booking table set up that was "Look at me now" themed. We asked each parent to bring a newborn nicu picture and a current picture and then we put them up on the wall so everyone could read the stories. Then we will put them in a book and donate to the NICU. It was alot of fun!! A few nurses even came! And of course, Dr. Debbie! :)