Sunday, May 18, 2008
Stringing along some really great days
We seem to be settling into a new norm after the news of last week. Our norms are constantly changing and I fear that might be the trend for quite some time to come. People are so unsure what to say to us and the easiest thing for most is to ask is "How are you?". There is certainly nothing wrong with that and I know it is so difficult to find just the right words, for I have found myself on the other side of the situation numerous times in my life. I want to tell everyone that we really are doing very well considering the uncertainty of what lies ahead. Our tears have been really few and far between since Wednesday. Joy has replaced that initial feeling of dread. How can we not be joyful when we look at all we are so blessed to have? Especially little Miss Zoey. My niece celebrated her First Holy Communion yesterday and although Zoey's immune system is still compromised due to the ACTH therapy, we headed to church and hung out in the back. The weather was beautiful, my niece Sophie Grace looked beautiful and the feeling of being back at church felt beautiful. It has been 7 weeks since Zoey and I have been there and it felt like a homecoming. It felt very peaceful to be there. At certain times in the past, church has been a difficult place to be. Sometimes it was because I was feeling angry at God and it felt forced or hypocritical to be there. When actually, it was the place I absolutely should be in, at that very moment. Other times it was difficult because I couldn't handle the looks of pity that often accompanied peoples faces when they spoke to us. Or when people were so uncomfortable they said nothing at all. Sometimes church has been difficult because I was always on the brink of tears. Knowing a song or a sermon might send me off crying. Sometimes it was because Zoey wasn't in my arms and I felt a part of me was missing. But not yesterday. Yesterday, church was the perfect place to be. The Holy Spirit held me up straight and strong and God sent me His grace. We also met a mom and her son, Hayden, and they touched us immensely in the short time we spent chatting. A beautiful family inside and out. You could just tell. Hayden is 9 years old and was born with a rare neurological disorder and has had more then his fair share of struggles. But in our brief time together, they became another example of strength and unconditional love that allowed us to say once again "We can do anything." Zoey continued with her abundance of smiles and giggles for everyone. In fact they haven't stopped since Thursday really. It reminded me of when her smile first emerged after heart surgery. As if once again she is saying thank you, I feel much better now. It is a double edge sword of sorts. The ACTH kept the hypsarrythmia away and the seizures away but left her body spent. Now the ACTH is leaving her system, the seizures and hypsarrythmia are returning but man does she feel so much better!! Why can't she have it both ways? No hypsarrythmia, no seizures AND feeling like all babies should always feel, all the time. We are cherishing the moments. I am taking lots of pictures and video. We are really living in the now. We remain confident that God will continue us in the path HE has chosen. That He will bring courage to us in the dark moments and lift us up when disappointment and discouragement has weighed us down. We remain so grateful that Zoey has gotten a reprieve from all the struggles the last 7 weeks had brought her. She has stopped having the larger, tonic seizures and now is experiencing some body type twitches a few times a day along with a single head drop here and there. We hate seeing ANYTHING at all but we have seen far worse in the past and for now we are pleased that her medication seems to be keeping things to a minimal. We remain hopeful that the Lord has great things planned for us and for Zoey and through the letting go of my need to know and to control, we will see our story unfold and marvel in the beauty of this life. We are good for now, really we are.