Since I've been home, my days are filled with whatever the Lord brings to mind next. It has been busy, but I made it to the pool for the first time on Saturday. That
was peaceful. It allowed my mind to focus and rest. It just floats between the two. I have started pulling Kelsey's clothes out of the drawers and giving them a good washing. The girls will go through whatever they need, save a few items for them to grow into, then give the rest away. I found a few gems...things Kelsey wrote...like favorite quotes and a special message to Trent. WOW! Here are some of them: "If you live to be a hundred, I want to live to be a hundred minus one day, so I never have to live without you." "True friendship is like health; the value of it is seldom known until it be lost..." "A real friend is one who walks in when the rest of the world walks out." "Friends are God's way of taking care of us." "If you should die before me ask if you could bring a friend..." "Everyone hears what you say, friends listen to what you say, best friends listen to what you don't say." "A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words..." I have to say I love these. They make you think. First what kind of friend are you and then, what kind of friends do you have. Through so many of you, God provided and cared for us for so long. It is one thing: to bring a meal a few times, but for 4 months(x2) WOW! ...to send one card, but to send them weekly for months, to pray once, but without ceasing, to take care of the girls needs for months, to give of yourself sacrificially in labor or finances. The list is complete, because God cares for us completely. Kelsey was a faithful friend, a steadfast friend, a trustworthy friend, a friend of confidence, a friend with wisdom, you were blessed to be her friend, but hear me, she was blessed to have you as a friend. Thankfulness rests in my heart.
"So then, just as you received Christ Jesus as Lord, continue to live in Him, rooted and built up in Him, strengthened in the faith as you were taught, and overflowing with thankfulness." Colossians 2: 6, 7
Love,
Mom
Thursday, July 7, 2011
Friday, July 1, 2011
Day 150-DANCING WITH THE LORD
Karly is resting back in her hospital room. They found a small cut in her esophagus which may be where she gets her food and pills stuck. She is on a strict no food, ice, water, nothingness diet today. If she doesn't get worse with pain, then it most likely is healing, and they will let her go tomorrow. She had a lot of secretions in her lungs. He cleaned it out and is sending for cultures. This may be the cause of her extreme tiredness. It doesn't explain her headaches or swelling face, but it is a start. If something serious is growing then she will have to stay. If it is not, then they will let her go and treat with oral med or bring her back after her week vacation with Zach. She has the same condition Kelsey had in her esophagus called Eosinophilia Esophagitis. I think the cultures will confirm this. There really isn't anything she can do for it. She could take steroids which she cannot because the skin viruses will explode. She can swallow an inhaler med, but this makes her hoarse. We will see if there are any other options. It has been another difficult week. She is taking it like a trooper.
The meeting about Kelsey went well. All results are coming back with no answers. This really gives me more assurance that it was Kelsey's choice to leave. All along I've felt that she was hanging on for us. She did make it clear that she was ready to see Jesus. I've been trying to relive those last three days to find where things went wrong. What else could we have done? The reality is that everything was fixable, the infections were under control, the kidney was fixable, the lungs weren't flooded, the organs were not infectious, the fungus was under control. She couldn't maintain her blood pressure. It wouldn't respond to medications; her heart was quitting. The most likely answer is that the chemotherapy damage her heart, but even that currently cannot be proved. It seems as though God answered her request, and she thankfully went with such grace and beauty. It still doesn't fill my hole to know this, but I am working on getting through this "fix it" stage. God is so faithful in helping me through this stage.
The news I was alluring to in April is ready to be released. I had been looking for the "way" I was going to honor Kelsey. I was looking into scholarships and foundations. Nothing seemed right. I was looking for God to provide the answer. I was being patient. Two months to the date of her death, I was at the AFCEA Gala in Maryland with Karly. I had the privilege to meet a mom and daughter with a story that touched me as soon as I heard what the mom did. I had that lightning strike moment. It was very poignant. I will always remember it. Later that evening as the other mom and I were watching our children dance, we were able to talk. She told me that it was strange that she didn't know us, but she already loved us. We were tied together then. We met the next night at the Children's Inn where she is mentoring in the "way" I am honoring Kelsey. I have launched an organization called DOCK8 Connection. The brochure it almost complete. The web domain is secured...dock8connection.org. I am using a template for now. Tyler is so busy, and setting up a website from scratch is time-consuming. Eventually, my hope, is that it will be personalized to be uniquely ours in a style fitting of Kelsey. For now, it is just getting information out. Eventually my mission is to connect families together, support research, and educate the families and medical community. In three weeks, we are trying to coordinate our visit to meet our first two DOCK8 families. Karly is very excited. Please pray for this to go smoothly and that we would connect with each other in a very special bond. Please pray that this organization will grow to meet the needs of the families, and that God will be at the very heart of it. DOCK8 is a disease, but Kelsey was not a disease. She had a very pointed mission, and I hope to continue her message.
Debbie and Ridge finally made it home from their weeklong nightmare as she calls it. The weather was bad, the flight was late getting to their connecting flight, they had to spend the night in Denver, and made it home Thursday evening. They missed their meetings with the pastor and funeral home, so that is what is happening with them today. All these things seem rather inconvenient, but in the larger scheme of things, I have to think that God is in control. His timing is perfect, so let's roll with it. I do imagine Grandpa, Kelsey, and Reid dancing around. It surely brings a smile to my face.
So for now, continue to look to God our Father for all things. He is faithful. Praying that Karly will be healed on earth as it is in Heaven.
Love,
Mom
The meeting about Kelsey went well. All results are coming back with no answers. This really gives me more assurance that it was Kelsey's choice to leave. All along I've felt that she was hanging on for us. She did make it clear that she was ready to see Jesus. I've been trying to relive those last three days to find where things went wrong. What else could we have done? The reality is that everything was fixable, the infections were under control, the kidney was fixable, the lungs weren't flooded, the organs were not infectious, the fungus was under control. She couldn't maintain her blood pressure. It wouldn't respond to medications; her heart was quitting. The most likely answer is that the chemotherapy damage her heart, but even that currently cannot be proved. It seems as though God answered her request, and she thankfully went with such grace and beauty. It still doesn't fill my hole to know this, but I am working on getting through this "fix it" stage. God is so faithful in helping me through this stage.
The news I was alluring to in April is ready to be released. I had been looking for the "way" I was going to honor Kelsey. I was looking into scholarships and foundations. Nothing seemed right. I was looking for God to provide the answer. I was being patient. Two months to the date of her death, I was at the AFCEA Gala in Maryland with Karly. I had the privilege to meet a mom and daughter with a story that touched me as soon as I heard what the mom did. I had that lightning strike moment. It was very poignant. I will always remember it. Later that evening as the other mom and I were watching our children dance, we were able to talk. She told me that it was strange that she didn't know us, but she already loved us. We were tied together then. We met the next night at the Children's Inn where she is mentoring in the "way" I am honoring Kelsey. I have launched an organization called DOCK8 Connection. The brochure it almost complete. The web domain is secured...dock8connection.org. I am using a template for now. Tyler is so busy, and setting up a website from scratch is time-consuming. Eventually, my hope, is that it will be personalized to be uniquely ours in a style fitting of Kelsey. For now, it is just getting information out. Eventually my mission is to connect families together, support research, and educate the families and medical community. In three weeks, we are trying to coordinate our visit to meet our first two DOCK8 families. Karly is very excited. Please pray for this to go smoothly and that we would connect with each other in a very special bond. Please pray that this organization will grow to meet the needs of the families, and that God will be at the very heart of it. DOCK8 is a disease, but Kelsey was not a disease. She had a very pointed mission, and I hope to continue her message.
Debbie and Ridge finally made it home from their weeklong nightmare as she calls it. The weather was bad, the flight was late getting to their connecting flight, they had to spend the night in Denver, and made it home Thursday evening. They missed their meetings with the pastor and funeral home, so that is what is happening with them today. All these things seem rather inconvenient, but in the larger scheme of things, I have to think that God is in control. His timing is perfect, so let's roll with it. I do imagine Grandpa, Kelsey, and Reid dancing around. It surely brings a smile to my face.
So for now, continue to look to God our Father for all things. He is faithful. Praying that Karly will be healed on earth as it is in Heaven.
Love,
Mom
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