Home >> butterflies and plan B

Miika earned 20 stickers on her “Happy Chart” and got to pick an adventure…she chose the Peggy Notebaert Museum, AKA the Butterfly Museum. On Thursdays it’s free, so after two of Nathan’s morning therapies, we packed up and went. Nathan practically worships butterflies, so I was very excited to see his reaction to literally 2000 butterflies fluttering about. They were doing a release of brand new butterflies as we walked in the door and Nathan was mesmerized. Unfortunately my camera’s batteries were sputtering out and I was only able to capture this rather pitiful photo:

I’d hoped to get a nice little movie of his reaction, but the best plans went out the window. There are lots of other activities at the museum which Miika and Nathan completely enjoyed.

Later that night, Miika’s left eye started to get irritated and she was unable to open it…mmm…at first we thought it was scratched, but by yesterday morning when it was completely red along with the left side of her face, we headed off to an Urgent Care…who said we had to go to our pediatrician first, which we did and after an hour’s wait in the Dr.’s office, it was determined that she has an acute case of pink eye. Yesterday I was supposed to be taking Nathan to UIC for an echo and an EKG, so that had to be rescheduled. Thank God for my mom who was originally here to take Miika to school and was able to shift gears and watch Nathan instead!

Last night we all trooped out to Wheaton for our small group bible study, germs and all. As I was sitting in Randy and Mary’s home, listening to our friend Wightman teach, all the stress of emergency rooms, Dr’s offices, sick children, work that’s not getting done, etc…faded. We were looking at Psalm 133: “Behold, how good and pleasant it is when brothers dwell in unity! It is like the precious oil on the head…” I sat there in the warmth of true friendships and was filled with such thankfulness for these friends who have prayed for us, supported us, and simply been available for so many years. I’ve lost track of how many years, but it’s more than 10. What a rare gift to have such beautiful friendships that have endured. These are not casual acquaintances, they have been handpicked by God! After Nathan was born, it dawned on me that each of the couples in our small group had someone close to them with Down syndrome. Emmy’s brother, Wightman’s nephew, and Mary who has worked with the STARS for more than 15 years. There was no explaining to do, these folks knew our path. What’s exciting now, is to see their joy as they watch Nathan develop at such a rapid speed compared to what their loved ones had to endure 40+ years ago. Already, Nathan is so much more advanced because of therapy, support, medicine, and information.

I have to be very careful not to focus so much attention on Nathan, that I forget Miika. She definitely feels left out during therapies and doctor appointments and needs to have her little love cup intentionally filled. My mom has been a tremendous help in this department, but Miika also really needs mommy time. It’s a constant struggle, but we sometimes have one-on-one time when Nathan is napping. It’s hard because I often really need that time to work. Oh, balance, it’s a very delicate game. I’m immensely proud of Miika. She is very bright and an amazing budding artist and sculpter. I’ll have to post some of her creations…

Well, it’s off to work today…so much catching up to do.

Posted in Work@home | 1 Comment »