Happy Easter!

Happy Easter!

Just a quick little update; I always say that it will be quick, and then I find myself still typing an hour later!

Saturday night we all went to the Easter Vigil mass. We were so blessed and fortunate that Marc was able to complete his RCIA at St. Mary's; the church we have been attending here in Memphis. Marc started the RCIA classes in Avon Lake back in September, long before Sophie's diagnosis. When we realized that we would be here for the Easter Vigil, he didn't think he would be able to complete the sacraments. We contacted the right people and everything fell into place in just a few short weeks. Marc had been intending to complete RCIA since we were married almost 10 years ago, but just never did. For whatever reason, he felt the calling in September and told me that he was going to go through with it. It's obvious to me during this challenging time in our life, the role that God plays. I have seen Marc grow closer to God during these past few months than I thought possible, and for that I am grateful.

Sarah is still recovering from her virus, her fever turned into a rash (which she still has, as well as a runny nose and cough) so she was not the happiest of children during the service. It didn't help that it started at 7:00pm and ended around 9:30pm; especially because Sarah is normally in bed by 7:30. Grandma offered to stay at the apartment with her, but I really wanted all of us to be able to attend mass at the same time, so I convinced her to come. Sarah started crying the minute we stepped foot in the church. Grandma took her to the cry room - it was a pretty good cry room because we didn't even know she was crying until Grandma told us that she cried for the first 20 minutes! Sarah was able to join us in the pew just after the homily, so that she could see her Daddy make his confirmation! (If only she knew what was going on.) In all seriousness it was a beautiful ceremony, and Marc feels blessed that he was able to complete it here. As part of the process he had to choose the name of a saint as his confirmation name. He chose St. Jude.

On the other hand, Sophie behaved so well, and even though I was pretty focused on holding her and making sure she was happy, and wondering if Sarah was about to scream, it was still beautiful to be there as a family. I could feel God's presence and during the confirmation service, one of my favorite songs, "You are Mine," was played.

I laid down with Sophie at 10:30, and dozed off a little. When I woke at 11:15, I came out to find that the Easter bunny came to the apartment. My Mom had combined what few goodies I had for the girls, with all the stuff she had been collecting, to make Easter baskets for the girls. She also had eggs filled with money hidden all over the apartment. Sophie loved it. Sarah was clueless, so Sophie got to "open" 2 baskets. I was grateful that I didn't have to worry about getting all that set up, and that my girls had a great Easter despite my lack of energy and organization. Marc's Mom and Dad sent us a Honey Baked Ham, scalloped potatoes, green beans, and a turtle brownie. Marc was able to "prepare" everything in 30 minutes. Sophie was hungry at noon, so we ate early, and it was nice that nobody had to worry about shopping or cooking. Thanks Bob and Kathy.

Tomorrow we will start our last full week here at St. Jude. Somedays it seems like we have been here forever, and others it seems like we just got here. It will definitely be a bittersweet moment. Sophie symptoms are still stable. Her walk and muscle weakness seem to be the main area of concern. She still walks with an obvious limp; her right leg is stiff and awkward. We've been told that she may be accommodating for all the weight gain around her middle (kind of like a pregnant woman's waddle) or that it may be a "muscle memory" issue due to the fact that she has been walking like that since Feb. 22. It worries me a little because I know that exercise and being outside is what she needs, but right now that frustrates her because she knows it is difficult. Tomorrow I will ask again, what the medical team says about the continued leg issue. To me, it doesn't seem tumor related, but again, I'm not the expert. I love seeing her smile, and hearing her laugh. Her personality is much better, and tonight she didn't mind when I put her in bed and told her I was coming out to do some work on the computer. She fell asleep on her own. I know I should be in there cuddling up with her, so I will end this soon.

Please say an extra prayer tomorrow. Monday is the day that her port has to be accessed, and we are still dealing with anxiety. The good thing is she only has 2 appointments, so we should be done by noon.

Because we are leaving soon, please do not send anymore packages or letters in the mail. We do enjoy getting them and certainly appraciate your thoughtfulness, but have realized that it can take up to 2 weeks for letters and packages to be filed and inventoried, so that we can collect them. We don't want to be gone by the time they are available for pick up, and aren't sure what St. Jude's policy is as far as forwarding mail.

We are ever so grateful for the support of our family and friends. This whole experience has been really eye opening. We are amazed by the number of people who care enough to send a card, a package, an email, or make a phone call to let us know they are praying for us. You have no idea how much that means. We are grateful for our faith, and also for your faith. This is what gets me through when all I really want to do is curl up in a little ball and sleep. When people ask how we are doing this, I say it is far from easy. We don't have a choice, but we do have our faith.

Please, please keep the prayers coming. God Bless you all on this Easter holiday.