In our fam we HATE Chiari! I know hate is a super strong word. In fact so strong, I tell my kiddos not to use it. I mean we are called to love...but when it comes to this awful illness I think hate pretty much describes how we feel. It has robbed our fam of some pretty important things- finances, time, vacations, and many everyday activities that most take for granted. Yesterday I was reminded of a reason to see a blessing in the curse! I witnessed 3 little girls and one young man posing for the camera with big beautiful smiles on their faces! My heart was warmed as I looked on these faces of courage! All 4 of these kids have Chiari, each fighting their own battle, but embracing each other with love!
Yesterday a sweet friend, Colleen Shawk from {we love your love} photography, took pictures of 4 chiari kiddos (2 of them mine). I probably would not have met Colleen had it not been for Chiari. She has generously snapped my kids photos over and over again. Every time she has captured their innocence and the special traits that make them them. She donated her gift yesterday to take these pics. We rounded up 2 other little girls with Chiari here locally. They just happen to be 2 of Brooke's closest friends. Why? Because Brooke knows they understand. They would never dare make fun of her challenges. They understand if she needs to stop and rest when playing. And they are blessings who we never would have met had it not been for Chiari.
I can't wait to see these amazing pics! The idea was to use these pictures to raise awareness about Chiari. It is also to tell everyone about our Unite at Night Walk on June 21 at Price Park. We would love for you to be a part of this Walk! If you want to learn how you can help go here. Join our Team! Help fight for Aidan and Brooke (and all the sweeties with Chiari!). Help raise funds, or just come to check it all out! All the proceeds will go to CSF to help find a cure and spread awareness. A nice evening walk in June....does that not sound lovely? Bring your kids, bring a loved one, walk your dog....just join us. We want to show others how something we hate...something cursed and awful....can bring many blessings!
Oh and of course pictures to come!!!!
A blog dedicated to my daughter Brooke who has Chiari I Malformation
Thursday, May 23, 2013
Saturday, May 11, 2013
A Day in the Life....
I always see the ad for the show "A Day in the Life" advertised on Hulu. Of course the show is about "people" other people consider exciting. Most people would not want to watch a day in the life of the everdayness of our family and friends. We would find it mundane, even repetitive because we go through those motions everyday. I even heard someone say, "When someone asks you how you are, they really do not want to know." What??? People do not want to hear about my life? Well I guess then this post will be a snooze fest for some. I am different I guess. I love to hear how my friends and family are doing. I want to know what makes their life special. I love it when I get letters from others detailing their story. For me it is a window into who they are.
A day in the life at my house is never ordinary. I pray every day for the ordinary. Don't get me wrong, I love so many aspects of my life, but some plain stink! I feel like I can say that without seeming down and out. I mean I push through everyday knowing there is better to come, having Faith of dancing in Heaven. But that is not today. Today stinks. I will make it work with Faith and Grace. I will rejoice in the small victories and the love that surrounds me. But sometimes I need to just see it for what it is, a plain yucky day.
"Why is today yucky?" you may ask. If you really want to know, keep reading. But I understand if this is where you say..."too much info girl!" And close this blog.
Yesterday was beautiful! Beautiful weather, beautiful sunshine...until the rain. I always start feeling yuck with the rain or storm pressure. I woke up doing the normal stuff a mama does. Brush teeth, get dressed, help kids brush teeth and get dressed, feed multitude of animals, feed multitude of children, some laundry, some dishes...but then my poor bug Aidan was miserable. I decided to call our ped who could see him at 11:20. I knew this meant one extra trip to canton. Hmmm my gas tank was low, could I squeeze in another trip? Yes I actually have to think this way. So we scrambled to finish chores and school work. My head was a dull ache and body was pretty creaky. We made it to doc, and then to target to pick up meds. Then home, quick lunch, and another load of laundry. I laid down for five minutes, and of course phone rings. No more time to rest, off to my doc appointment. The chairs in the waiting room are pure torture...but no options. Push through it and keep a positive attitude. Get through appointment, walk out to get next appointment and there on the counter is a huge vase of lilies. I try to act cool, but covering your face with your hand looks slightly odd. Almost instantly I feel faint, hot, and sick. Thankfully my doc saw it happening and told me to just go wait in hallway. She came out there and we finished up. Glad she is so awesome! I left feeling really sick. It is hard to explain but it is a weird sicky headache that makes everything feel gross. Kinda like being car sick. I drove home, hurried to get dinner and all the kids dressed. We had to head off to Aunt Amy's play.
Now at this point every part of me was screaming to just go lay down! Evening is so hard, and going out in the evening with 3 kiddos(amazing kiddos, but still kiddos) is quite a feat. We managed to get there for the play, which was amazing! So proud of Amy! After the play Chan was tired, and poor Aidan was still miserable. But we needed to see Amy, she needed to know her fam was there to support her. We stood in this chaotic line to see her and other cast. In this crowd of people it became very hot. I started to feel queasy and light headed. I kept telling myself "You have to do this, stay focused!" Chan decided to get upset, and wanted to be held. I picked him up. I was trying to keep Aidan focused because he was feeling yuck. Then Brooke looks up at me and says, "Mama I feel dizzy, my legs won't hold me." She was pale and I understood how she felt. I leaned her up against me and held onto her with my free arm. (I believe my girl suffers from POTS like her mama) I prayed...please let us get through this, please let me stay standing and not faint right here. Once we moved a little it cooled down, and Brooke and I felt a little less dizzy. We made it! We saw Amy! Thankfully I was able to get everyone in car and head home. The ride at night is always hard for me. But the rain makes it even worse. The kids know I need complete silence because I have to just focus on driving and praying. After getting in, changing everyone into Pj's and tucking all in...I crash.
So today my body is yelling at me! It is angry for the mistreatment yesterday. But here I am with 3 kids and another day. There is not much rest, there is not much comfort. I have to admit, I silently let the tears fall. I pray for just a moment to not hurt. Like I said my day in the life is never ordinary but I see hidden blessings. I am thankful to know He is supporting me each day. I try to stay focused, but I am far from perfect. Sometimes days just stink! So I may not dance today, but someday I will!
A day in the life at my house is never ordinary. I pray every day for the ordinary. Don't get me wrong, I love so many aspects of my life, but some plain stink! I feel like I can say that without seeming down and out. I mean I push through everyday knowing there is better to come, having Faith of dancing in Heaven. But that is not today. Today stinks. I will make it work with Faith and Grace. I will rejoice in the small victories and the love that surrounds me. But sometimes I need to just see it for what it is, a plain yucky day.
"Why is today yucky?" you may ask. If you really want to know, keep reading. But I understand if this is where you say..."too much info girl!" And close this blog.
Yesterday was beautiful! Beautiful weather, beautiful sunshine...until the rain. I always start feeling yuck with the rain or storm pressure. I woke up doing the normal stuff a mama does. Brush teeth, get dressed, help kids brush teeth and get dressed, feed multitude of animals, feed multitude of children, some laundry, some dishes...but then my poor bug Aidan was miserable. I decided to call our ped who could see him at 11:20. I knew this meant one extra trip to canton. Hmmm my gas tank was low, could I squeeze in another trip? Yes I actually have to think this way. So we scrambled to finish chores and school work. My head was a dull ache and body was pretty creaky. We made it to doc, and then to target to pick up meds. Then home, quick lunch, and another load of laundry. I laid down for five minutes, and of course phone rings. No more time to rest, off to my doc appointment. The chairs in the waiting room are pure torture...but no options. Push through it and keep a positive attitude. Get through appointment, walk out to get next appointment and there on the counter is a huge vase of lilies. I try to act cool, but covering your face with your hand looks slightly odd. Almost instantly I feel faint, hot, and sick. Thankfully my doc saw it happening and told me to just go wait in hallway. She came out there and we finished up. Glad she is so awesome! I left feeling really sick. It is hard to explain but it is a weird sicky headache that makes everything feel gross. Kinda like being car sick. I drove home, hurried to get dinner and all the kids dressed. We had to head off to Aunt Amy's play.
Now at this point every part of me was screaming to just go lay down! Evening is so hard, and going out in the evening with 3 kiddos(amazing kiddos, but still kiddos) is quite a feat. We managed to get there for the play, which was amazing! So proud of Amy! After the play Chan was tired, and poor Aidan was still miserable. But we needed to see Amy, she needed to know her fam was there to support her. We stood in this chaotic line to see her and other cast. In this crowd of people it became very hot. I started to feel queasy and light headed. I kept telling myself "You have to do this, stay focused!" Chan decided to get upset, and wanted to be held. I picked him up. I was trying to keep Aidan focused because he was feeling yuck. Then Brooke looks up at me and says, "Mama I feel dizzy, my legs won't hold me." She was pale and I understood how she felt. I leaned her up against me and held onto her with my free arm. (I believe my girl suffers from POTS like her mama) I prayed...please let us get through this, please let me stay standing and not faint right here. Once we moved a little it cooled down, and Brooke and I felt a little less dizzy. We made it! We saw Amy! Thankfully I was able to get everyone in car and head home. The ride at night is always hard for me. But the rain makes it even worse. The kids know I need complete silence because I have to just focus on driving and praying. After getting in, changing everyone into Pj's and tucking all in...I crash.
So today my body is yelling at me! It is angry for the mistreatment yesterday. But here I am with 3 kids and another day. There is not much rest, there is not much comfort. I have to admit, I silently let the tears fall. I pray for just a moment to not hurt. Like I said my day in the life is never ordinary but I see hidden blessings. I am thankful to know He is supporting me each day. I try to stay focused, but I am far from perfect. Sometimes days just stink! So I may not dance today, but someday I will!
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