My post the other day was a little doom and gloom. Sorry about that! Had a rough couple of days. Back t normal again! I did receive some really awesome messages from friends. Apparently I had a few people worried! But it is always nice to hear from people. And one of the messages was so special to me. It was from a lady who inspires me very much. Her and her husband have been through so much physically. And yet every time I see them they have a smile on their face. They are always the first to help out and volunteer their time for various things. They have so much love and share it. The other day, she shared it with me.
The story she told me was about walls. Sometimes we think of walls in a negative way. We think of needing to find a way over walls when life gets tough. Or we think of crumbling walls either literally or figuratively. But as she reminded me, walls are also a source of protection. She reminded me how so many pray for our fam, and how we have walls of love and protection built around us. What a beautiful reminder of how community works! Over the past couple of days I have taken so much comfort in knowing those walls of prayer and love have been built around us.
Another wonderful friend wrote a little note reminding me of finding things to bring me joy. One of those she mentioned was music. Now I love me some music! Sometimes I do not get to listen to my 80 hair bands like I would like. But I do listen to some jazz and country in the car. Today I flipped on the Fish to hear some inspirational music and heard "All I Can Do(Thank You)" by Mikeschair. It reminded me I do not even deserve this awesome life I have been given. It is all Grace, and I need to remember to be thankful oh so thankful for that! It is soooo good to have those around us who do not admonish us when we are down, but rally around us bringing hope, love, and a little bit of grace! So blessed by that!
Get your little bit of HOPE HERE!
A blog dedicated to my daughter Brooke who has Chiari I Malformation
Saturday, August 31, 2013
Wednesday, August 28, 2013
Do Miracles Run Out?
The past week has had some big bumps. Every time I think we may have turned a corner, another wall pops up. Thankfully we have learned to scale walls fairly well. We have been so blessed! Our friends, family, and perfect strangers have carried our fam through some pretty awful times. We are grateful beyond words. I used to write thank you notes and get them in the mail as soon as I could. I wanted desperately to show my gratitude. Sadly I have pulled away from this. Not from lack of wanting to, but the pain of writing makes it very hard now. I have given into sending emails and FB thank you's. It makes me sad as I want to show how truly thankful we are.
I know many of you have prayed for us over the years. I know each prayer has put into motion many of the miracles we have witnessed. But you know how miracles pop up at just the right times....well I often wonder what happens when the miracles start to run out? We are clinging to Hope that ours have not yet hit the bottom of the well. We are praying we have a few more miracles left. The truth is...I know our miracles are something we do not even deserve, a special gift. Maybe this is why I treasure even the smallest ones so much. And yet my human heart fears what happens when our miracles run out. What will my family do?
If you have ever gone through a medical crisis, you know what it does to your finances. Imagine having a daughter with a chronic illness who sees 4 specialist. Also a son with 2 chronic illnesses who sees 4 specialist. And then yourself who has 2 chronic illnesses plus several other life altering illnesses, and you see 6 specialists. I can honestly say we have hit bottom. Between prescription costs, medical fees, co-pays, and travel to see docs, our finances no longer sustain us. You know I HATE to talk finances. In fact, when I hear the word finance or money, I cringe. I call bill collectors (which are all necessary bills because we have zero debt other than medical and one car payment) and plead with them to be understanding. Most of the time I cry, sometimes I yell. Not because I am angry, because I am at my end. We exceed the amount to have assistance, but do not have enough to pay our electric.
We were able to save our house last year with a miracle. But now we are not sure if staying is even the right thing. We have a wall collapsing in our basement, a ceiling caving in, a well that needs pampered, and a septic on its last leg. My wonderful hubby leaves at the wee hours of the morning to go to work to get as much overtime as he can. We try to be frugal in all we do. I buy my kids lunch off the dollar menu once in awhile and I have terrible guilt.
Why I am writing this? Why am I airing all our "dirty" laundry? Because sometimes the prayers I need are for sanity when calling the electric and gas company. Sometimes I need a friend who says it is ok to treat my kids to 50 cent cones. Sometimes I need someone to call and cry with because I do not know how we will make it to the next pay day. And sometimes I need to be reminded how blessed I am, and need to be thankful for what I have.
My heart is sad tonight. I had to cancel my doc appointment with Dr Henderson in Virginia. Sadly I could not pay the money that is required to see him, or even pay for the expense to travel there. I am disappointed because I had hoped he might have some answers to help me. I am angry because the cane I do not want to use, glares back at me everyday, taunting me as my right leg drags more and more. Frustrated because I am on a year waiting list for another doc who might be able to help. Confused because one day I feel a little better and then I pay for the good day for 3 days. Irritated at myself for complaining, for needing help, for asking for help. Annoyed that this life is filled with so much suffering, and that I am even daring to complain about my little plight. But grateful...always grateful that this is not my HOME. I have a future somewhere else, and so many have lovingly carried me on this rough road!
I know many of you have prayed for us over the years. I know each prayer has put into motion many of the miracles we have witnessed. But you know how miracles pop up at just the right times....well I often wonder what happens when the miracles start to run out? We are clinging to Hope that ours have not yet hit the bottom of the well. We are praying we have a few more miracles left. The truth is...I know our miracles are something we do not even deserve, a special gift. Maybe this is why I treasure even the smallest ones so much. And yet my human heart fears what happens when our miracles run out. What will my family do?
If you have ever gone through a medical crisis, you know what it does to your finances. Imagine having a daughter with a chronic illness who sees 4 specialist. Also a son with 2 chronic illnesses who sees 4 specialist. And then yourself who has 2 chronic illnesses plus several other life altering illnesses, and you see 6 specialists. I can honestly say we have hit bottom. Between prescription costs, medical fees, co-pays, and travel to see docs, our finances no longer sustain us. You know I HATE to talk finances. In fact, when I hear the word finance or money, I cringe. I call bill collectors (which are all necessary bills because we have zero debt other than medical and one car payment) and plead with them to be understanding. Most of the time I cry, sometimes I yell. Not because I am angry, because I am at my end. We exceed the amount to have assistance, but do not have enough to pay our electric.
We were able to save our house last year with a miracle. But now we are not sure if staying is even the right thing. We have a wall collapsing in our basement, a ceiling caving in, a well that needs pampered, and a septic on its last leg. My wonderful hubby leaves at the wee hours of the morning to go to work to get as much overtime as he can. We try to be frugal in all we do. I buy my kids lunch off the dollar menu once in awhile and I have terrible guilt.
Why I am writing this? Why am I airing all our "dirty" laundry? Because sometimes the prayers I need are for sanity when calling the electric and gas company. Sometimes I need a friend who says it is ok to treat my kids to 50 cent cones. Sometimes I need someone to call and cry with because I do not know how we will make it to the next pay day. And sometimes I need to be reminded how blessed I am, and need to be thankful for what I have.
My heart is sad tonight. I had to cancel my doc appointment with Dr Henderson in Virginia. Sadly I could not pay the money that is required to see him, or even pay for the expense to travel there. I am disappointed because I had hoped he might have some answers to help me. I am angry because the cane I do not want to use, glares back at me everyday, taunting me as my right leg drags more and more. Frustrated because I am on a year waiting list for another doc who might be able to help. Confused because one day I feel a little better and then I pay for the good day for 3 days. Irritated at myself for complaining, for needing help, for asking for help. Annoyed that this life is filled with so much suffering, and that I am even daring to complain about my little plight. But grateful...always grateful that this is not my HOME. I have a future somewhere else, and so many have lovingly carried me on this rough road!
Wednesday, August 21, 2013
How The West Was Won and other little known adventures....
Here is your challenge: Take a trip out west (2.5 days to be exact) in an 8 seat minivan with 7 other passengers. (3 of them your children, 2 your parents, and 2 your younger siblings) Should you choose to accept this challenge, you will probably loose your mind. But should you choose to stay home in your warm,comfy bed, you will regret it and miss an adventure of a lifetime! Well of course I took the challenge! I mean seriously who would pass up something like that!?
We headed out on a hot, humid early morning...scratch that...We headed out on a hot, humid, almost lunch time morning. What a ride! God Bless my dad who drove about 92% of the time. And my mom who sat in the middle row and tended to all the kiddos. And my sis who set in the middle of 2 of my littles in the way back seat! Chan managed to make the whole 2.5 days with out puking in the car. I was able to stare out the window and imagine the wagon trains traveling through the deep rifts of land. All in all it was a very pleasant trip! We managed to make it to Colorado with our minds still in tack.
As we crossed the Colorado border, I was waiting in expectation to see the mountains popping up in the distance. I love Colorado mountains. They are not like Pennsylvania mountains. PA mountains are lovely. You are driving and are gently consumed by their majesty. They well up around you like gentle hills climbing into larger mountains. Full of greenery and depth. But Colorado mountains just appear. One minute it is flat, quiet. Then you look out and see great sharpness spiking out of the earth. It causes you to look and make sure you have seen correctly. There they are..spread in front of you! I love that moment. I wait for it. As a child, I was disappointed if we hit the border at night. It meant having to wait one more day to see those mountains.
Seeing my Grandma is like seeing the mountains. She is amazing! I have always been in awe of her. My Grandma is one of the most graceful, strong, confident women I know. Her house is a place of warmth, and beauty. Going there is still a special treat! Grandma is 89, lives in her own home, and still sells Mary Kay! I like to think I get a little of my crazy from her. She has never had trouble speaking her mind, and even when she is down she is up. Her courage in life is a true example for our family. And this is the lady I just spent 10 days with! Yep pretty cool!
We had a great time! I felt really good there. My joints did not ache at all. I had a few headaches and wore out but nothing major. Some highlights...hmmm...where to begin? My dad and I took the kiddos to a really cool bug museum. The bugs were tropical bugs from all over the world. All them were pinned and displayed. Aidan got some great ideas for the future. My aunt and 2 awesome cousins took us to the Olympic Training Center! I was super excited to be there! And even more mind blowing...my 2 cousins train in the Olympic pool! We had a shopping day at the outlet mall in Castle Rock. My dad took my brother and Aidan on a restaurant tour in Denver. They went to 3 restaurants featured on Man vs. Food. Aidan tried Elk. I was able to see my super cool cousin who lives in London now. I held my little tiny cousin. Made me one happy girl to hold a wee one again! The kids played, and played, and played with all their cousins! It was awesome how they all got along and played like they see each other every day! Brooke had a sleepover at my aunt's house with cousin Izzy. They even had pedi's! My aunts all cooked some pretty rockin' food which always led to conversations around the dinner table.
It was so refreshing to sit on my Grandma's deck, look at the mountains, and enjoy her gorgeous backyard. Spending time with her was a blessing. I lay in bed my last night there and prayed for one more visit to Colorado. Then I remembered last time I asked for one more. I felt like a little kid at the store, begging my mama for one more piece of candy. Promising her it would be the last time I asked. Just one more time to sit and hear her voice, see her flowers, sip coffee in the morning with her, eat cookies and drink Dr Pepper. When I was a kid, I always wondered why my mom, her sisters, and my grandma would put on the sunglasses when we were leaving. Whether it was still dark, we were at the airport, or standing in the driveway...the sunglasses always came out. Early Thursday morning my sunglasses were on too. The hugs were tight and long. The tears stung my eyes and were hot on my cheek. I quickly swiped them away, wanting my babes to see mama smiling as we said good-bye. Choked up "I love you" were uttered as we all crawled in the van. The first few minutes driving away are always very quiet.
The ride home is longer than the ride there. On Friday, I had a rough day. Not sure if it was the altitude change, but I fainted 5 times. It was scary and I wanted it to stop. Thankfully it did. I felt better Saturday and we made it home safe. It was a beautiful adventure with my fam! Not sure if it is my 36 years or my seemingly endless travels to visit family, but I can see the value in the time spent. I do not take a moment for granted. Thankful beyond words to my parents who helped us go!
We headed out on a hot, humid early morning...scratch that...We headed out on a hot, humid, almost lunch time morning. What a ride! God Bless my dad who drove about 92% of the time. And my mom who sat in the middle row and tended to all the kiddos. And my sis who set in the middle of 2 of my littles in the way back seat! Chan managed to make the whole 2.5 days with out puking in the car. I was able to stare out the window and imagine the wagon trains traveling through the deep rifts of land. All in all it was a very pleasant trip! We managed to make it to Colorado with our minds still in tack.
As we crossed the Colorado border, I was waiting in expectation to see the mountains popping up in the distance. I love Colorado mountains. They are not like Pennsylvania mountains. PA mountains are lovely. You are driving and are gently consumed by their majesty. They well up around you like gentle hills climbing into larger mountains. Full of greenery and depth. But Colorado mountains just appear. One minute it is flat, quiet. Then you look out and see great sharpness spiking out of the earth. It causes you to look and make sure you have seen correctly. There they are..spread in front of you! I love that moment. I wait for it. As a child, I was disappointed if we hit the border at night. It meant having to wait one more day to see those mountains.
Seeing my Grandma is like seeing the mountains. She is amazing! I have always been in awe of her. My Grandma is one of the most graceful, strong, confident women I know. Her house is a place of warmth, and beauty. Going there is still a special treat! Grandma is 89, lives in her own home, and still sells Mary Kay! I like to think I get a little of my crazy from her. She has never had trouble speaking her mind, and even when she is down she is up. Her courage in life is a true example for our family. And this is the lady I just spent 10 days with! Yep pretty cool!
We had a great time! I felt really good there. My joints did not ache at all. I had a few headaches and wore out but nothing major. Some highlights...hmmm...where to begin? My dad and I took the kiddos to a really cool bug museum. The bugs were tropical bugs from all over the world. All them were pinned and displayed. Aidan got some great ideas for the future. My aunt and 2 awesome cousins took us to the Olympic Training Center! I was super excited to be there! And even more mind blowing...my 2 cousins train in the Olympic pool! We had a shopping day at the outlet mall in Castle Rock. My dad took my brother and Aidan on a restaurant tour in Denver. They went to 3 restaurants featured on Man vs. Food. Aidan tried Elk. I was able to see my super cool cousin who lives in London now. I held my little tiny cousin. Made me one happy girl to hold a wee one again! The kids played, and played, and played with all their cousins! It was awesome how they all got along and played like they see each other every day! Brooke had a sleepover at my aunt's house with cousin Izzy. They even had pedi's! My aunts all cooked some pretty rockin' food which always led to conversations around the dinner table.
It was so refreshing to sit on my Grandma's deck, look at the mountains, and enjoy her gorgeous backyard. Spending time with her was a blessing. I lay in bed my last night there and prayed for one more visit to Colorado. Then I remembered last time I asked for one more. I felt like a little kid at the store, begging my mama for one more piece of candy. Promising her it would be the last time I asked. Just one more time to sit and hear her voice, see her flowers, sip coffee in the morning with her, eat cookies and drink Dr Pepper. When I was a kid, I always wondered why my mom, her sisters, and my grandma would put on the sunglasses when we were leaving. Whether it was still dark, we were at the airport, or standing in the driveway...the sunglasses always came out. Early Thursday morning my sunglasses were on too. The hugs were tight and long. The tears stung my eyes and were hot on my cheek. I quickly swiped them away, wanting my babes to see mama smiling as we said good-bye. Choked up "I love you" were uttered as we all crawled in the van. The first few minutes driving away are always very quiet.
The ride home is longer than the ride there. On Friday, I had a rough day. Not sure if it was the altitude change, but I fainted 5 times. It was scary and I wanted it to stop. Thankfully it did. I felt better Saturday and we made it home safe. It was a beautiful adventure with my fam! Not sure if it is my 36 years or my seemingly endless travels to visit family, but I can see the value in the time spent. I do not take a moment for granted. Thankful beyond words to my parents who helped us go!
Sunday, August 18, 2013
Quick Update...
I would love to sit and write a book about the wonderful time we had in Colorado. How my parents blessed us with this trip, and how I was able to spend time with my Grandma. In the next few days I will find time to reflect on all this and write it down! For now I wanted to give a quick update on our school decisions. You know how sometimes you think you have it all figured out....I mean it seems so clear any other decision seems insane? Well that is how we felt about the kids attending school this year. We felt like it was time, and we had some pretty good confirmation that it was a sound decision. Several things have happened over the past few weeks making it very clear school was not an option right now. Many things I can't share here. But in my heart I knew this was not going to work. One of the main reasons was the kids health. Brooke does well but still wears out very fast. I was worried about a whole day of school. Aidan is having headaches every day now. He is struggling with subluxations and dislocations of his shoulder and hip. This makes any kind of rough housing painful. And being a boy trying to stay clear of this is hard. I found a great online program that my mom is going to help me with. And who knows what the future will bring! Always an adventure!
Saturday, August 10, 2013
A Celebration with Purple Cupcakes!
Do you remember this day? Surgery day, August 10, 2010.
I remember this day like it was yesterday but it was 3 years ago!!! Yes my bug still has headaches and pain....but nothing like 3 years ago! That day was a blessing to us! As our friends and family prayed, our doc hero performed brain surgery on our little bug. We waited down the hall...praying, hoping, breathing our wishes. Hours passed. I imagined our doc and nurses, tired, hot, pushing on to help our girl. They did not give up. Today Brooke is a happier, healthier little lady because of that day. So today we celebrate 3 years with purple cupcakes! Happy Zipperversary Brookie! We love you so very much!
I remember this day like it was yesterday but it was 3 years ago!!! Yes my bug still has headaches and pain....but nothing like 3 years ago! That day was a blessing to us! As our friends and family prayed, our doc hero performed brain surgery on our little bug. We waited down the hall...praying, hoping, breathing our wishes. Hours passed. I imagined our doc and nurses, tired, hot, pushing on to help our girl. They did not give up. Today Brooke is a happier, healthier little lady because of that day. So today we celebrate 3 years with purple cupcakes! Happy Zipperversary Brookie! We love you so very much!
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