A few days ago we went to a BBQ at the Hospice for the Hope group. We had a great time. I have really enjoyed getting to know this group of people. Hearing their stories makes us feel less alone. Although there are still many differences in our stories we feel at home with our new friends. These are people who know and are learning what it means to live day by day. The kids had a Great time too. Firefighters came with two trucks - they raised and lowered the ladder, the kids could climb in and out of the trucks...and they could play with "Sparky" (guy in dalmation costume).
While we were there, we decided to get Rachel's oxygen level tested. You may remember about 2 weeks ago, it was in the 50 percentiles. It was 70% that day! This threw us for a bit of a loop. It seems confusing to us - just when we think we know what is happening, something changes. Dave later talked to one of the Palliative Care Doctors at the BBQ and she reminded us that the arteries are still closing (as seen on the last echo) and there can be fluctuations. I have noticed that her feet seem pinker these days - they seemed very purple before. Again, another reminder that we can't predict from day to day, week to week however much we would like to do so.
One of the moms at the BBQ made a few comments that have stuck with me. She said that one day when her older girls look back at these days and they talk of the sad times, she will remind them of all the things they got to experience because of their brother's life. Rachel's life may be short but our family has also experienced many things that we would not have otherwise! On days like this, I feel blessed. Rachel has made our lives richer and more beautiful. And isn't it wonderful - the only touch that Rachel has known has been of love? She feels our loving touch and hears the happy sounds of play from her brother and sister and they know and love her! I often think of how we will hurt when she is gone and I forget the gifts that Rachel (and ultimately God) is giving us too. But there are many..
....for all these gifts, we thank you God!!! "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." James 1:17