I have to admit right off that this is not a post that leaves a warm fuzzy feeling. I was chatting with a girlfriend the other day, and we were talking about the lack of honesty we sometimes have with those around us. We can put up these fronts that all is ok, when in reality it is not. Sometimes it is good to do this. But other times we need to let the reality be seen.
The last two weeks have been difficult for the Crown Fam. I have struggled with just how i can help Brooke. I want so much for her to not feel badly. We had hoped the surgery would help, and in many ways it has. Many of Brooke's issues I do not write about on here. I want to give her some level of privacy and I know how permanent the Internet can be.
I have been looking to see if maybe PT or OT therapy would help. We went last week for testing. They did activities with her and played some games. She was in a great mood and played all the fun games. Then they told me she functions at a normal 4-5 range. This I knew, she is right on target, but she tires so easily. Plus she has such terrible leg pain, and gets very wobbly at times. They told me they do not think they can help her. Needless to say I was frustrated. As we left, Brooke tripped and fell into the van. She then got in the car and cried because she was tired. We made a quick trip to Walmart, where she rode in the back of the cart and whined because her legs hurt. Once in the car she finally cried herself to sleep. An almost 5 year old little girl should not be that tired after 20 minutes of playing.
We have decided to go back to having Brooke stay home for things unless she has to go. Even just spending the afternoon at Grandma's is tiring. She cries most of the way home and then falls asleep. The other day I left her screaming at my moms because she did not feel well. She cried for over an hour. She finally calmed down, and watched movies. This just breaks my heart. It is so hard to see your child hurting and not knowing how to help her. I worry about her future if the pain should get worse. Chiari is so unpredictable.
Each time we get home and Brooke is asleep or just to tired to walk in, I carry her up the stairs. If you have ever been to our house, you know you have to go up a full flight of stairs. This scares me each time I go up these stairs. What will I do when she is heavier? How will I get her in? What happens when my body just can't carry her anymore?
We are going back to our urologist here one more time. We will see what happens. We have an appointment with a urologist in Columbus but not until April. We go back to NY in February. I just feel so overwhelmed. She is ready for more urodynamics tests and MRI's once again.
This is not a post to complain. I am not writing this to be reprimanded for a negative attitude. I still have faith that God will see us through this. He never fails. But I am human and some days I just get tired. I am writing this to tell other moms, dads, families who are in similar situations to hang on! We all need support and reassurance. I think that we need to show the Real in all of our lives sometimes. Not for pity, but to say we are all in this together. Chiari is a yucky disease, and so many people have not even heard of it. Surgery can be a great fix, but sometimes it is not. Some days are great, and others just plain stink. Some moments Brooke runs around with a smile, the next she is crying in the car because she over did it. Just a simple thing like a climate change can make her feel worse.
Thanks for reading my rambling post. It is an amazing journey to be Brooke's mom. I would not trade this job for any in the world and that is Reality!