So many wonderful things happened this week that it is hard to know where to begin. Our entire family traveled to Denver for the SOFT(Support Organization for Trisomy) conference. The plan was that Tara, Annabel, and I would attend the conference while the older kids and my husband would do the tourist things. Their activities consisted of going to the mountains, train rides, whitewater rafted, museums, baseball games, movies, and some shopping nearby. Besides the conference, I was really looking forward to meeting Abigail Grace and her family. She is one of the children listed on the sidebar of this blog. Tamara(her mom) and I had been blogging back and forth for awhile now. I already knew from our conversations via the internet that she is a beautiful person and a wonderful mom. After meeting, I have found that she is exactly all this and more. As busy as she is with two young boys and taking care of Abby, she insisted on coming to get me and take us out for the day. Before the conference began, I was able to spend several hours on Wednesday with her and her children. I truly felt that we had known each other for much longer. My daughter Tara, Annabel, and I filled her van and were off to the Aquarium for lunch and to visit. Abby is a beautiful little girl with amazing eyes and so are the boys Jacob and Joey. These were some of the sweetest children I have ever met. As Tamara and I had a lot to say, her boys were so respectful and quiet. They were amazing with Abby and Annabel. She offered to let me come to their house to visit again if time allowed, but things just go crazy after the conference began on Thursday we were unable to connect. She told me of Abby's equipment and the bed she has created for her so I really wanted to visit her home. I am truly sorry I didn't have the time to visit with her more. That day they had increased Abby's seizure medication yet again. Please pray for Abby that they will be able to control her seizure and not continue to cause further damage. Also pray for Tamara and her strength to continue to care for Abby!
The conference clinics began on Thursday. We were able to see a doctors concerning her feeding issues, her kyphosis, and her teeth grinding. Other things were discussed but these were the clinics that we were put in. This year they didn't have specialist in urology or G.I. which are her bigger issues. But each doctors took all the time needed and made great suggestions. What is so amazing about these doctors that they are donating their time to meet with us. Also, they are willing to see the children as people and, as parents, we do not have to justify to them why they deserve the treatment. They believe in all of these children and that their precious lives are worth living. Many doctors we see in Texas have never encountered Trisomy babies, so it is nice that these doctors know the different issues that our babies face.
Thursday evening was the Welcoming Dinner. Our dinner was great but our company was the best. We were lucky enough to sit by the family who was in charge of welcoming at our first conference the year before. Eric and Melissa are the parents of Ella. We met her last year and feel so blessed to have known her. You see right after the conference Ella passed away. She was a most beautiful little girl who was 5 years old with Trisomy 18. The night was filled with such emotion. We talked of Ella and her short life and the impact of how she touch so many. They have two precious little boys named Luke and Gabe. The amazing story is that Melissa found out she was pregnant two days after Ella's passing. Through their loss and sorrow a most beautiful child is born. Eric's sister came to the conference with them. She is a NICU nurse and I know such a blessing to their family. She is the perfect aunt to these children and so obviously loved Ella. We are so thankful that we were able to spend time at the conference with their family.
On Friday came the workshops. Our first workshop was given by Dr. Steven Cantrell. He and his wife lost their precious son to T18 and he continues to give his time each year to the conference. Because of him last year, we learned how painful the sun is to Annabel's eyes. Also, with her long eyelashes, we were given advise on how to care for them. Each year he brings these special sunglasses to give to our children. He takes time to fit them one by one. The balloon release on Saturday is in memory of their son Ryan and sponsored by them each year. It is a beautiful tradition that I was able to attend this year. More on the balloon release later... My second workshop was on Hippotherapy. This is therapy done on a horse. I have been very interested in this but have yet to find a facility within close range. It is amazing to learn of what all the benefits are to these children. There were parents whose children are in this type of therapy and their stories are so positive.
Friday evening I was able to go out with my family. We went to a great mall where everyone shopped and then to dinner. It was nice to hear what all their experiences were thus far. I do believe next year they would take a larger part in the conference experience. The whitewater rafting trip was put on by the conference and was a great experience which all of them enjoyed.
Saturday morning began with the video of the children, living and deceased. It is set to the most beautiful music and as you can imagine many tears were shed. Two families whose children went to Heaven since the last years conference we able to speak and share precious stories of their little ones. These children in such a short period touched so many others. About 11:15 we loaded the buses to go to Boulder for the balloon release. It was held at the University of Colorado there in Boulder. The setting was amazing with tents and food for everyone. The picnic is the first event, then socializing, and lastly the balloon release. One of the things I wanted the most was to meet Mieko's parents. I had seen pictures of them on Mieko's website, but wasn't sure if I would recognize them. Luckily, right after I finished my lunch I saw a lady that resembled the pictures so I asked if it was her. We spoke for awhile and then she brought her husband over. They asked to see Annabel and it was very hard. These children with Trisomy 18 all have similar features and it is very hard on the ones whose children have passed. We hugged, looked at pictures of Mieko in a photo album, and just talked about what happened. What beautiful people they are. Mieko passed a few weeks before so it was sad and you could tell they were missing her. The devoted their entire lives to getting Mieko everything she needed. Again God is so awesome, as Maya is carry their second child. This family needs our prayers for their hearts and arms that ache for Mieko and also for the health of this precious child they are carrying. I am so grateful for the chance to meet this family face to face. Thank you, Maya and Shawn for all the help you have given to Annabel and myself.
After socializing came the balloon release. They released over 300 balloons with children's names attached. There were poems read, prayers said, and beautiful music played. The day was perfect with blue skies. So many tears were shed as each family watched the balloons until they could see them no more. I had missed this the first year due to Annabel being sick and leaving early, but I hope to never miss this again. The evening ended with an auction full of fun and laughter. We were able to spend time with families from last year and meet many new ones. We were so happy to see Akaiya and her mom Kelly, Morghan and her parents Faye and Mark, the Marohn family including Inger (Ella's aunt), and the entire Knoebel clan who spent much time with Annabel. Some of our new friends that we met this year were Ava and her mom Billy Jo, Arianna and her family, Lillian and her parents, Corinne (our wonderful support person at clinicswhose precious daughter is in Heaven), the Papillion family whose baby is in Heaven, and so many others.
I need to thank my family for going along so I didn't feel I had to leave anyone behind. To all of my family for helping and loving Annabel for another year! To Tara who missed out on some personal time so she could help me with Annabel>