Posts Tagged ‘death’
The past two weeks have been a whirlwind of events. I keep waiting for things to slow down, but they never do. I feel our life is much like a snowball rolling down a big hill, picking up speed as it goes. I really have to strap on my running shoes to try to keep up. It has been two weeks of much reflection, sadness, relief, and a number of other emotions thrown into the mix. Yesterday I read a blog post by Ronnie Sharpe and it put a big smile on my face. I love Ronnie’s positive attitude in every aspect of his life. In a world where there is much despair and sadness, and as the media portrays it, not much positive surrounding us, it is very difficult to adopt a sunshine like attitude.
To read Ronnie’s blog post click on the link: http://runsickboyrun.blogspot.com/2011/02/only-6-years-left.html I highly recommend it!
I am ever so guilty of a negative attitude. I remember being in a very hard place a couple of years ago. I remember the struggle, especially after Julia’s CF diagnosis, to look at the bright side of things. As far as I was concerned, a bright side didn’t exist in our world. I remember waking up each morning, afraid to go in and check on Julia, because I was sure that one morning I would not find her alive. I thought for sure that one night, she would just simply stop breathing…because it was her fate, her lot in life…to die and to do so very early in life.
I hated what CF did to our family…our hopes and dreams. I felt robbed of my time. I felt like I was carrying terrible burden. I always expected the worst and but tried to hope for the best. Whenever I looked at Julia, CF was the first thing to come to mind. I was sad and very hopeless at times. That number 37…that stupid number…it was always there. The thought that only half of CFers make it to age 37 and half do not consumed me.
When Julia first cultured pseudomonas, I felt her life was instantly shortened. I remember telling my husband, through tears, “If God is going to take her from me, I wish he’d do it now.” Such a hard place to be…always looking over your shoulder for the Grim Reaper, because you know he’s there, hovering…waiting to strike at any moment.
I can’t really quite say how or when I climbed out of my hole. I’m also not so sure I’m fully above ground at this point in time, but I’d like to tell you parents who are in that bad place…it does get better…there is hope.
Surround yourself with positive people. Understand that your battle is very unique. Just because you have seen the ugliness of CF manifested in the lives of others, understand that their life is not your own. You are writing your own story. Blazing your own path. This one was the hardest one for me, but…put a little faith and trust in your CF care team. Do everything they ask of you to the best of your ability. They really do care about your little CFer and they know how to take care of these warriors. Their hearts are very big and they want nothing but good health for our little ones. Take one day at a time, one step at a time, one treatment at a time…keep pushing forward…keep fighting. Brighter days will come and sometimes all it takes is the passing of time.
I’ll leave you with some pics of my trip to El Centro for my Grandma Kamper’s funeral service. It was wonderful to be there and hear of the legacy of love that she is leaving behind.
My dad is in the front on the far side of the casket.
This flower arrangement was amazing! My Uncle Carey got this for my Grandma. It has 77 roses...one for every year of her life.
My dad, Uncle Ed, Aunt Sis, Uncle Carey, and Grandpa Kamper
Elisa, Me (Janna), Sarah, Dustin, Laura, Rhonda...all six of us together!
Perry's Corner in Holtville, CA...spent many summers here at my grandparent's store...seeing how the old hand prints measure up!
We love you Grandma Kamper!
Many of you may not know that our family took an unplanned vacation last week. I got a call from my dad on Martin Luther King Jr. Day and he told me that my Grandma Kamper may only have a few more days left of her life. After trying to figure out flights, we just decided to jump in the van and jet down there to see her one more time before her last breath. We got down to El Centro the next evening and I went to see my sweet little grandma in the hospital. She was indeed in very bad shape when I got there.
About four years ago, my grandma had cultured Mycobacterium avium-intracellulare (MAI) in her lungs and was diagnosed with pulmonary fibrosis. Talk about the things that make you go hummmm. I think we can be fairly sure that Julia’s CF gene comes through the Kamper line…my dad’s side of the family. Anyway, my grandma kept things on the low-down with this diagnosis. She didn’t really talk about it and we now know that she wasn’t treated for it in anyway which seems to have been by choice.
So, after much research on MAI, I found that it is a bacteria that can infect the lungs. Not just anybody’s lungs, but of people like Julia who have CF, or people with AIDS, for example. I read that just like many bacteria that Julia has cultured in her lungs, if MAI is left untreated, it damages the lungs, causing them to fibros, and eventually leads to death. I don’t know why my grandma cultured this bug, but she did and it was left untreated and with time it definitely took its toll.
After Christmas, Grandma Kamper got a cold virus and let’s just say…with pre-existing pulmonary issues, it really took her out. By the time I got to the hospital, she could barely breathe. I keep up on many blogs that have illustrated quite vividly end stage cystic fibrosis. My grandma went out of this world exactly the same way. It truly broke my heart to see her struggling for her every breath. It shattered my heart when she told me that she didn’t want to fight anymore but that she wanted to go home to die. I think it probably took everything my dad had, but he honored her wish and Grandma Kamper went home on Sunday and passed away next to her sweet husband Monday morning.
We were unable to be there when she left this world, but I am so glad I could see her one last time before she earned her wings. She was truly a remarkable woman and I’m so privileged to call her my grandmother.
I will leave you with a few pictures from the trip. I didn’t take any pictures of Grandma, because she was in such bad shape, but I’ll have to get some old ones posted later…The kids were truly in sand heaven last week and the weather couldn’t have been more perfect!
Austin in Glamis
Olivia in Glamis
Julia in Glamis
Kids at Coronado
Me...and the Hotel Del Coronado in background
Julia at Coronado
Joe, Olivia, & Austin at Coronado
Pacific Beach at sunset
Austin learning monkey skills
Olivia on the rope
Austin can now make it half way up the rope.
The foam block landing pits are a big hit with all the kids.
Hope you all have a fun 4th!
Sweet sisters and their BBQ attire
Ready for church on the 4th of July
4th of July hike
Such a great lookin' bunch!
Just had to put this one in because she's so sweet.
Me, wishing I was the one in the backpack asleep...
This weekend was a great weekend for our family. We couldn’t have asked for better weather as it was much cooler the past two days, even a bit chilly in the evenings. We started the weekend off right by cleaning the house and getting ready for a Saturday evening BBQ. The girls helped me make a flag cake for the occasion and they really enjoyed mixing cake mix after cake mix and putting the fruit touches on the top. The hardest part was making sure Julia didn’t fall into the cake smashing it in it’s entirety.
We had a very tasty meal. The menu included carne asada, fresh tortillas, corn on the cob, rice, beans, seven layer dip, watermelon, fresh cherries, cake, ice cream, and all the fix-in’s you could imagine for some tasty carne asada burritos. I guess having a Mexican-style meal may seem strange for the 4th of July, but I couldn’t resist. I had finally stumbled upon a grocery store that sold carne asada, and I had to have it! I’ve survived six years in Utah, not knowing where to purchase ready-to-grill carne asada and I found it and had to have it. The food was great and I was very pleased with the meal. I even introduced the whole mayo and Parmesan cheese combination for the corn on the cob and some thought it tasted fantastic. If you haven’t tried it, you’re missing out.
Saturday evening we lit fireworks at a near by high school parking lot. Why there? We found out that you can’t light fireworks east of Wasatch Boulevard. We are just one street east, so we are in a no fireworks zone…bummer! We put the fireworks and the kids into the motor home, parked, got out the lawn chairs and had our little family fireworks show.
We headed home around 10 so we could see what big fireworks shows could be viewed from our balcony. We soon found out that from our front porch, you could see multiple fireworks shows. Our best view was of the Sugar House fireworks show. It was quite a treat to get to see the show without fighting the crowds. We could even see Magna’s fireworks show going on way over on the west side. This was the first 4th in this house and we look forward to many more to come.
Since the celebration of the 4th happened on the 3rd, today was just another Sunday. We went to church and then did a short hike with the kids and dog. The kids spotted some butterflies and a lizard and enjoyed picking wild flowers. It was a great way to end the weekend.
I guess I feel the need to reflect a bit today. I feel very grateful to live is such a wonderful country with many opportunities and freedoms. As a woman, I take for granted the ability to wear a pretty little dress to church and show off my Body Pump calves. We don’t think that wearing a tank top is such a privilege, but we don’t live in a country where the only part of a woman that can be exposed is her eyes. The fact that my daughters can go to school and get an education, a higher education, and beyond is a true privilege, a blessing.
We have so much living here in America. I recently finished reading The Power of Two. It is a story about twins who were born with cystic fibrosis and both eventually survived double lung transplants. Joey and I got to hear them speak at the hospital a couple of months ago. These women are half Japanese and they have traveled to Japan many times. What I found simply astonishing is that in Japan, people with cystic fibrosis are lucky to make it past childhood. Japan does not approve many of the medicines that Julia has the privilege of using. My knowledge of the world is so very limited. I do know that we are all so blessed to live here, in this country. We have so much and take so many things for granted.
To switch gears for a minute…it has been quite the roller coaster in the CF community these past two weeks. One beautiful, 28-year-old cyster got her new lungs! So very exciting for Piper. How blessed she is and how excited I am for her to have this new chance at life. The hardest news for me was that of Conner Jones. He is spreading his angel wings and has flown home. The reason this was such difficult news for me is because Conner was Austin’s age and because Conner had cystic fibrosis like Julia. Too close to home for me. I so appreciate his mother Sarah for sharing her story with the CF community and with the world. She has put into words the very intimate details of Conner’s last days, right down to his last meal. I got to see into the world of a very courageous CF parent. Sarah has set such an example for me.
I guess since our family lives with CF everyday there are many unanswered questions that I’ve had. These past two weeks, through Sarah’s blog, I’ve had my questions answered. She painted a very vivid picture of what it was like to be a parent of a child with CF who doesn’t make it past childhood. I think I’m not the only CF parent who wonders if his or her child will ever make it past childhood…wonders what it would be like if the end came sooner than we’d like. The fact is that 50% of people living with CF should expect to live to age 37, but what about the other 50%. The fact is they won’t. I wonder every day what 50% my Julia will be in. I don’t think I’m alone with these thoughts as I’m guessing probably every CF parent wonders the same.
Live every day like it’s your last. Savor the time you have with your families and your children. Our time here is very short, CF or not. Live, love, breathe…