Monday, April 11, 2011

ups and downs--the rollercoaster continues

I'm thinking we need to come up with a name for this roller-coaster we have been on for the past 41/2 years--any ideas??

It's been awhile since I've written because, to be perfectly honest, I'm at a point in which I'm not sure what is important to share and also if I even understand fully what is going on.

I'll start with Gracie. She had a pretty tough recovery after that whole tooth episode--wowzer, that was a rough one for her! All winter long she was sick with something it seemed. She had lots of colds and flu bugs--only one hospitalization, but sort of scary nonetheless. She has started developing some pretty major headaches. With these headaches, she shows stroke-like symptoms. The first one happened clear back in September, then another one in December, which put her in the hospital, then she had one a few weeks ago. She has been seeing a fabulous neurologist at the Mayo Clinic who has been trying to figure out what exactly this is all about. She has these symptoms, then all of a sudden, she's fine. Completely fine. In December they did a pretty detailed MRI which lasted several hours. At the time, they told me she had little spots on her brains--one doc even called them tiny tumors. They were located in the very center of her brain, which amazingly isn't all that useful. They deemed the cause her stay on ECMO. The neurologist explained to me that very few children had survived a 10 day stay on ECMO until the past 10 years or so. They are finding these spots on the brains of nearly all of the children who have an MRI. Gracie is quite blessed! Many children have these "spots" in areas of the brain which have a lot more function and also have much larger "spots". The neurologist is completely amazed at Gracie's abilities, her sense of humor, her awareness, her speech, her creativity--the whole package. They also saw a larger "spot" on her brain, which they called a "silent stroke". Perhaps she had a slight stroke with one of these headaches, maybe it was even before she was getting the headaches--who knows? She really has no repercussions other than a lack of reflexes in one of her feet. Not a big deal at all--she, nor anyone else, would ever even notice. She continues to be at "high-risk" for a stroke.

Gracie's blood counts have been pretty stable, although we have noticed throughout the winter a definite decrease in her energy. She can barely make it to the top of the steps before she lies down or asks to be carried. She turns very blue with every activity. God made the body so fantastically, however, because it tells her to stop. She spends a lot of time coloring, drawing, watching TV, playing video games--to a teen PERFECT! She, however likes to run and jump and play--her body only will let her do those things for a very short time. She had a cardiology appointment a month ago and the doctors are figuring out a surgical plan for her. It appears she has two options--one very high risk with a possibility of a longer life, the other very low risk with the reality that her ventricle will shut down in a few years and her options will be run out. The doctors mentioned a surgery date in June, but we are hoping to wait until September--it looks like it won't really make much difference. Right now, it is out of our hands. Gracie has beat many odds and we know that we know that we know her days are numbered as are ours. God will take her home when her purpose has been fulfilled--that's just how He works. We are hoping and praying that time is a long time away although we know His plan is perfect and paradise awaits her. It's simply not our call. That is so freeing to us as we are in positions of making life or death decisions. The Prince of Peace has this all figured out--we are just putting one foot in front of the other and enjoying each day we have with her and our other kids.

Gracie's personality is fantastic!! She is so stinkin' funny. All. The. Time. Some of the stuff she comes up with just blows our minds, so very creative. And super cute, and squeezable, and the life of the party! I truly can't imagine this world without her...I simply cannot picture it. I'm so glad God worked it out so we just experience the here and now. We don't need to know what lies ahead--just the choices we are making I choose LOVE.

How's that for a segway into Selah's life? Selah had been having a pretty decent winter until the past couple of weeks. Once again, we are seeing some pretty disturbing behaviors with her--it's as if she completely shuts down in front of people, then goes off and destroys while she is alone. We cannot leave her alone for any period of time or we have a disaster on our hands. I just can't figure it out. What we are learning through all of this is our responses have to mirror Jesus's. We fail miserably most of the time, yet always grab perspective and move forward. We are at a "moving forward" time right now. Yesterday I asked her if she thought she was a good girl or a bad girl. She said, "bad girl", so we made a chart. Yep, I'm a "retired" teacher. We went through her days and found out she is bad just a few minutes each day, so really she's very good the rest of the day--this also fits into the time unit she's in at school by the way! It's just those bad minutes are REALLY BAD...I mean REALLY BAD. We also drew pictures of our family and how we all fit into it so well. The reason is we are attached because we love each other. She loves when we are on vacation, when she is eating ice cream, when the sun is out. Otherwise she only likes us a little bit. What a tough concept for a child to grasp when she spent the large majority of her life completely unloved! We can talk and talk and talk, but until she FEELS love, I'm afraid her responses are not going to change. So often, she likely doesn't feel love because of the consequences to her behaviors, even the reactions from us and our other kids. We are, once again, making a point to hug her more, to tell her she's beautiful more, to just play with her more. The behaviors cannot be overlooked because they are not even safe, so we do have to deal with these. I have read so much, studied so much--I know what to do, yet it's so hard to always be kind and loving to a child who is constantly destroying. Our responses are always a choice. We can choose to be kind and loving or we can choose to just coexist. Sometimes I need to step away for a bit and gain a little perspective. I hate it that my mood STILL affects my responses. Less and less, but it still does!

We had a terrific vacation to Florida over spring break. We did a LOT of sitting by the pool and just relaxing with our family. We did venture out to Universal Studios a few times late afternoon and evenings, which was also fabulous. I'm not sure why we still live in the frozen tundra--perhaps it's because I would get nothing done if I lived in a nice climate. It's 58 degrees out now and I'm sitting outside with my laptop--I cannot let a nice day be wasted inside. And yes, Floridians...58 degrees is a nice day for Iowa in April!!

Thanks for checking in!!