Sometimes it just isn't fine.

We have a dear friend who is currently walking through her own valley. Several weeks ago, as we were feeling the heaviness of decision making, she shared with me something that had been shared with her. She said this, "So many people say it will be fine ... and I want to yell at them and say it’s not fine ... but then she said, it may not be fine but it will be good. She said, good we can live with, good we learn from, good is teachable. Good, God is in." This has really stuck with me. I want it to be fine and when I think about fine I think about all of this just going away and not being our daughter's life. For Alex to get up and take off running after her brothers and sisters, to be back to jumping on the trampoline, and climbing trees but what I really want is God's will to be done and that is what we continue to pray for. We pray for wisdom, courage, patience, and strength. We pray for healing and we know God can but we pray that God's will be done because we know that His perfect plan for her life is good and right and that He is using and will continue to use these difficult situations for our good and His glory. Every time we see Alex smile, hear her laugh, watch her make the most of her restrictions but swinging higher on the swing, peddling faster on her hand peddled bike, or scooting faster than anyone I have ever seen, I am reminded that she has an incredible story and God is using her in many ways.

I think about all of this as Alex is struggling with more physical challenges. As side effects of her medication she has lost her appetite and we are having to work really hard to get her to get the nutrients that she needs. We are getting creative with timing her meds and her meals so she can get some nutrients before she begins to feel sick. She has also started to get sores in her mouth that are causing her discomfort. Her leg and foot have started to get ice cold at random times and they are unsure of the exact cause of this. They believe it has something to do with the way the vascular malformation is affecting the leg but they do not know the exact cause at this time. This girl has been the most cheerful little child through all of these ten long months of surgeries, doctors, and restrictions and it is hard to see her struggling so much more now.

Overall she is still the happiest little clam but she has her moments of sadness, anger, and frustration as she doesn't feel well and wants to be more active than she is able to be.

Big Bear, as the stuffed friend in the picture is lovingly named, was given to Alex by one of our neighbors. Abbe was ready to pass him on to someone else to love and he has been a great comfort to Alex. He is the perfect size for her to snuggle up with and use as a pillow or chair and any number of other things. She really does love Big Bear.

We have been blessed so richly with friends and family and even strangers who want to be a part of Alex's story by helping us out in so many different ways. I wish that I could thank every person individually but I hope all will see this and know how thankful we are for you and your generosity. We appreciate the prayers for our family and for Alex as we continue to navigate the ups and downs of this journey.

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