I had the most lovely date on Saturday. Daddy and Emma had a date close to home while Alex and I headed to Fayetteville. Our goal for the day was to pick out spring/summer clothes for her and Emma. She did an awesome job and we stayed in our budget. Win, win. I had such a lovely time with my big girl and I have the most perfect picture of it in my head. It was a very big girl job and she did is like a pro, picking out every day clothes and even an Easter dresses for herself and Emma.
Daddy and Emma went to Sonic for a slushy and then to Walmart for a few things. Drew wound up having to carry Emma, as she couldn’t sit comfortably and was having some pretty severe dystonia (the body stiffness and spasms that are so painful). She picked out a new baby doll and then she and Drew came home to snuggle and watch television.
Next time will be Emma & Mommy, Alex & Daddy date day. We’ve talked a lot about taking the girls to baseball games this spring, but I really don’t think that Emma could tolerate it, so that may be a perfect date for Drew and Alex. I will have to think of something special to do with Emma.
Sunday morning Emma woke up at 4:30am with a fever. I was worried about it, having so much medical information on my mind already. I gave her ibuprofen and laid with her for quite a while, just making sure she was comfortable and still breathing. Knowing that respiratory issues will likely be the biggest problem makes me very sensitive to how they are breathing. We didn’t go to church, since I wasn’t sure if her fever was coming back or not. It never did, so I’m guessing that her fever was just a momentary thing, probably resulting from stress. We went on to Nonnie’s for a belated birthday lunch and the most delicious HUGE birthday cupcakes. I am blessed with a mother-in-law who is so supportive and loving.
Thank you all for the birthday wishes and cards. 31 is likely to be a year different from any other as we journey with the girls, but I am sure that it will be one filled with lovely memories.
Okay, for the dreaded subject. I am guessing that you all have been processing the news from the neurologist last week. It is a lot to process. Everything is settling in for me and Drew and we are handling it as well as can be expected. How blessed we are to have each other! We know each other so well, holding each other accountable and balancing each other everyday. It is almost impossible to not think about what is coming, but we are together in this. We believe that there is a difference between being alive and living, and we intend to live. Sure, some things have to be altered and we may not be as ‘out and about’ as we have been in the past, but we are living. Our girls are living.
Yesterday, when we got home from Nonnie’s, Alex asked to touch the grass. How can you not smile at that? We stopped in the yard and I put her feet in the grass. She stared and smiled as her toes touched the green. We stopped in several places, feeling the difference between the grass and the clover. That is living, people. It doesn’t have to be a trip to Disney World, it can be as simple as stopping to let your toes touch the grass and really feeling the moment. That is living and we are living it up.