Wow 2016 was a crazy mix of ups and downs. We always have a feast at my parents for dinner on New Years Eve and sit around the table and talk about the highlights of the year.
Highlights:
- Our big one this year was Miss Lydia! It feels like she has been with us forever but really she was only here for half of this year. She is such a smiley kiddo who is so affectionate! She loves to give kisses and wraps her arms around you so she can hold you close. She is a cuddle bug who would snuggle all day.
- Time with friends. We have had several friendships grow this year. Friends that we have had for a long time get deeper and stronger and new friendships start. We are blessed by the people who are in our lives who help to support us and love on us. We are so blessed
- Family time. From trips to museums, to zoo time and more. I love our family time.
- Ronald McDonald House. We have been so blessed by RMH this year and the friendships we have made there. From a place close by to lay our heads between appointments to warm meals that help to make time in the hospital less expensive.
- Our Church. We are so blessed by our church! From people who love us and care about the girls, to ministers and staff who pray for us and visit when we are in the hospital, and helped us when Lydia was switched to very expensive formula.
- Jilli-boo! Jilli has grown so much this year in so many ways! She started to grow physically which is a huge change. She went from 12mo/18mo clothes to 2T this year which is huge for her. She also grew in maturity and knowledge. She is such a kind kid who wants the best for others. She also works so hard at so many things. I am so proud of her and all of her hard work. I love her giggle and when she asks to cuddle. She has done well with the adjustment to becoming a big sister and that was a big step for her this year. She has learned about being a friend this year and what that means. She has worked so hard this year!
- They say a high percentage of parents with a kid with complex medical needs have PTSD. Going through it all the medical stuff a second time is easier in some ways because we already have the doctors on our team that we need and we know more now and were able to get Lydia help sooner. But it is hard reliving something so rough. There is a reason this blog was rather silent for a while... it was hard and somedays still is hard but we take it one day at a time.
- I'll be honest, the election and everything that went on in our country this year took a hit on my heart. I have witnessed more racism on my facebook feed this year then ever before. I have watched people be awful and it has broken my heart. Words matter. I am always going to be a social justice person, its who I am to the core, and this year was rough on that. From Aleppo to things here in the US, the world had a rough year and it was a rough reminder of how much of a hand the evil one has in this world... sometimes its all too easy to sit here in America and complain about our first world issues and this year was a reminder of the reality of the world.
- Pregnancy was hard on me. I puked most of time and my energy was zero. The first half of the year was rough for me and because of that we spent more time at home.
- My own health stuff. I don't talk about my health often but there have been several challenges this year. From my latex allergy getting really bad that it is now dictating more places we can and can't go, to my own muscle and joint issues and my EDS and hormones between pregnancy and postpartum have done a number on my teeth this year causing issues there. I try to push my stuff to the side as much as possible so I can take care of the girls but my stuff has been sneaking up more this year.
- January 9th we head to RMH for a few days. We have weight check and tube change outs and a very important genetics appointment. They called the night before Jillian's birthday and told us they have results back from the exome sequencing and it showed some things. The conversation was not very definitive and honestly very frustrating so until we talk to the doctor and hear the real results we don't want to worry people about what things were said during that phone conversation but the reality is we could be getting some news we really don't want to hear (we do "want" to hear so we can best help our children but some of the things mentioned on the phone were keep us up at night with worry scary). 2017 could bring us a diagnosis, but we are also trying a guard our hearts that it might not. The girls' health always keeps us on our toes, and I'm sure 2017 will be and adventure. We also have our new team of Special Needs on board with us and I am excited to work with them this year to help the girls.
- We are going to Disney in the spring with my parents and Brent's grandpa. My heart really needs time to rest and fill back up and it is amazing for Jilli who is able to just be a kid for a week without therapies and doctors. We have reservations for her to get her hair done like a princess. It is something I am really looking forward to this year! I am excited to see Lydia there too and watch her excitement.
- Time with friends and family. Thats always a goal
- Investing in others. My mom and I were talking this weekend how without the girls medical stuff I wouldn't be connected with the special needs community. I feel like it is my privilege to love others wherever I am at and in this season we are a part of this community and I want to use this as an opportunity to show God's love to others so I am excited to see how loving others will look this year.
- Helping Jilli to learn more preschool skills this year. She loves to learn and our goal is to help foster an environment of learning in our house. Jilli got the Osmo and has been enjoying learning with that. My goal this year to to grow in my intentionality of helping both girls to grow. Brent is working on fun science experiments for him and Jilli to do together to invest in one on one time with her.
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