It’s Maria’s third week at St. Jude’s. The boys and I came down a week ago Saturday. The first week was a little rough but we are starting to adjust better this week. We are so thankful to have a nice place to stay where we can all be a family. The people here at St. Francis of Assisi parish are so kind. Thanks to my friend’s aunt, we have really been treated so wonderfully. We are so grateful to her for helping us find a place to stay and we even had a terrific meal dropped off this week from one of the Mom’s in the parish. We still do not cease to be amazed each day at the people who come out of the woodwork to help us. They don’t even know us, but they are right there to lend a hand to us. It’s a humbling experience.
My first day at St. Jude’s with Maria was a very difficult day for me. Maria needed a wheelchair to get around the hospital because she would tire easily and her balance and eyesight were not stable. She was getting worse. It was very noticeable to me after being separated from her for a week. Being in the hospital that first day made my heart sink. I noticed when we got into the hospital Maria’s voice got very low and she became very sad and scared and I hated that. I felt somewhat angry with the place. You look around and see many children who are not well. You think to yourself “what are we doing here? This isn’t where we are supposed to be.” Reality started to really sink in for me. Many of the children are bald. Many wear masks. Maria asked me if she would have to wear one and I did not know what to say. I thought how relieved I was that Maria would lose very little hair. Then it occurred to me that though that was a good thing, it also meant that she has an inoperable tumor.
Ed took me around and showed me the ropes. Of course Ed had already mastered everything, not to mention everyone in the place already knew who he was. As we walked down the halls people would wave to him or stop and talk. If you know Ed this isn’t surprising at all. There was some comfort in knowing that Dad was making sure he was on top of everything for his girl. He is doing an unbelievable job.
Yesterday Maria received a package from her Kindergarten class. She brought it home and went through all of the cards from her fellow classmates and it was so nice to watch her smile and laugh and get chatty about all of her friends that she loves. She misses her classmates and going to school at home. She couldn’t get enough of their cards and we couldn’t get enough of seeing her happy. Thank you Mrs. Ritzler.
Yesterday and today we have started to notice some improvement in Maria and we are very excited. Maria is noticing it too and it makes her happy. They say you enter into the period of “false hope” when your child starts to improve. Our prayers are focused on continued improvement without looking back. One thing you learn is the doctors will say what they will and must, but you must reach beyond that. So many of you are praying for our Maria. This is so important to us and we are so appreciative to all of you. It is everything. We are absolutely moved beyond words at the outpouring we have seen. Ed and I talk about the kindness we receive everyday and we don’t know how we can ever repay everyone. Please know that all of you, too, are in our prayers and thoughts each day. It truly shows the power of God when you witness the outpouring of love towards our little girl. Please continue to pray. Please don’t forget. This is what we are counting on. God is listening.
Ed and Megan