We fought hard. All of us. It was a long, strenuous battle and one that we may not have asked for, but that we faced with courage and strength and humility all at once. Especially Mom.
On September 21, 2010, Mom's battle ended. She won. No, not by getting a transplant or a miraculous healing. She won because she finished well. She did all she could do and then trusted God to bring the victory. The victory was that He sent His Son to die for her and she accepted Him. So when she took her last, labored breath here on Earth, the next breath she took was breathing in her Savior's sweet presence.
I can only imagine what her first words were when she arrived. She was so animated in this life, and I think we keep our personalities (maybe just a sanctified version of them) in Heaven, so she no doubt had something exciting to exclaim.
Saturday, September 25, 2010
Sunday, May 30, 2010
Fluffy with the Food Network
One of Mom's favorite channels is the Food Network. She loves watching them give tips and fix recipes and could probably keep tuned in all day sometimes! Whenever I come to the house, she always has some treat she wants me to try. So far, I've done recipes by Paula Deen, Bobby Flay, Rachael Ray, and Barefoot Contessa's (Ultimate Ginger Cookies) just to name a few.
Undoubtedly, when I arrived this week to spend extended time with her, and even though we were all kind of dealing with a new reality of this stage of the disease, she had her trusty list already being constructed and wanted me to hit the grocery store to pick up some coveted items.
So I felt like the next Food Network Star this week as I tried a few dishes:
- Filet Mignon stir fry with red and yellow bell peppers, broccoli, baby bella mushrooms, water chestnuts, bean sprouts, onions, garlic and special sauce over rice. She loved this so much she ate it for breakfast the next day!
- Veal scallopini with lima beans and cheddar/pecorrino romano au gratin potatoes.
- Chicken salad
- Various omelets
- Skirt steak fajitas
I'll admit that I took a little pride in the fact that she cleared her plate every meal. I was glad to be able to serve her in that way.
It was tough to try to stick to my healthy eating plan while cooking all of these new dishes. It's gotta be way more fun trying to gain weight than it is trying to get skinny. She says that she's rather be 'fluffy' than skinny any day.
Our Only Hope...
For the last month had been trying to convince the Cleveland Clinic not to take her off the transplant list. They were debating whether or not to take her off because she was weakening and they were afraid that if they ever did find the right lungs that she would not make it through surgery in her state. Her weight had dropped and she was struggling with tasks that took minimal movement.
She was holding out hope. She was trying to force food down her throat despite a nonexistent appetite. She was keeping a smile on her face (well, she ALWAYS does that) and trying to sound strong even though she had been in and out of the hospital twice this month for dehydration and other various ailments.
Finally, after she returned home from the most recent hospital stay, she talked to her doctor in Cleveland and conceded that she is, indeed, too weak to travel to Cleveland for her upcoming appointment and/or any future transplant.
Furthermore, she also allowed the Cleveland Clinic to write a script for hospice to come in and help. They began this week with many visits from nurse techs, nurses, social workers, etc...It has been a tiring week for all of us, to say the least.
Reading this, it would seem normal for one to think, "they've lost all hope now that there's no transplant that could take place." I'd like to say that for us, there's only been ONE hope all along, and that is God. God is our only hope through life or death. God is our only hope. He is the One who will get us through this and will make something beautiful out of it. The transplant was not our hope. We don't put our hope in medicine or doctors or people. We put our hope in the the One who made the people and the doctors and the medicine and who has taken on all of our diseases upon Himself.
Isaiah 40:31 says "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Lord, please continue to keep our eyes fixed on You, not on our situation or on anything else. I pray that You would help us to run and walk without growing weary while we continue to minister to Mom and make her as comfortable as possible. Renew our strength Lord, in our minds, in our bodies, and in our spirits. Our only hope is You, Lord. Our only hope is You.
She was holding out hope. She was trying to force food down her throat despite a nonexistent appetite. She was keeping a smile on her face (well, she ALWAYS does that) and trying to sound strong even though she had been in and out of the hospital twice this month for dehydration and other various ailments.
Finally, after she returned home from the most recent hospital stay, she talked to her doctor in Cleveland and conceded that she is, indeed, too weak to travel to Cleveland for her upcoming appointment and/or any future transplant.
Furthermore, she also allowed the Cleveland Clinic to write a script for hospice to come in and help. They began this week with many visits from nurse techs, nurses, social workers, etc...It has been a tiring week for all of us, to say the least.
Reading this, it would seem normal for one to think, "they've lost all hope now that there's no transplant that could take place." I'd like to say that for us, there's only been ONE hope all along, and that is God. God is our only hope through life or death. God is our only hope. He is the One who will get us through this and will make something beautiful out of it. The transplant was not our hope. We don't put our hope in medicine or doctors or people. We put our hope in the the One who made the people and the doctors and the medicine and who has taken on all of our diseases upon Himself.
Isaiah 40:31 says "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Lord, please continue to keep our eyes fixed on You, not on our situation or on anything else. I pray that You would help us to run and walk without growing weary while we continue to minister to Mom and make her as comfortable as possible. Renew our strength Lord, in our minds, in our bodies, and in our spirits. Our only hope is You, Lord. Our only hope is You.
Tuesday, April 13, 2010
Enjoying the Deck Again
Brandon and I brought the girls down today to see Mom and Dad. They had to miss Allie's first birthday party last weekend, so we brought the birthday girl down to them to enjoy another cupcake and little celebration. It was absolutely gorgeous outside, and the pollen wasn't even all that bad, so we grilled out on Dad's beloved Ducane grill (steak and aspargus) and also had baked potatoes, salad, and beets (Mom's craving of the day, I guess...she comes up with funny ones from time to time.)
Anyway, Ella ate an adult sized portion of steak...she LOVED it! She kept saying, "give me more of my steak, please!" and eating it all up in a hurry. Allie even enjoyed little mini pieces and then devoured a carrot cake mini-cupcake after we all sung 'Happy Birthday' (led by Ella) to her. They both love being the center of attention.
We all really enjoyed having Mom outside with us. Like I said before, the weather couldn't have been any more perfect. She really savored every bite of dinner, and was able to eat a lot (for her) and keep it all down (so far), so that was really great. She kept saying, "oh, this is so good. OH, this is sooooooo good!"
After dinner and once I put the girls down for bed, we sat outside and remembered other wonderful meals outside on the deck in days past. The deck has truly been such a source of fun and fond memories for us.
Anyway, Ella ate an adult sized portion of steak...she LOVED it! She kept saying, "give me more of my steak, please!" and eating it all up in a hurry. Allie even enjoyed little mini pieces and then devoured a carrot cake mini-cupcake after we all sung 'Happy Birthday' (led by Ella) to her. They both love being the center of attention.
We all really enjoyed having Mom outside with us. Like I said before, the weather couldn't have been any more perfect. She really savored every bite of dinner, and was able to eat a lot (for her) and keep it all down (so far), so that was really great. She kept saying, "oh, this is so good. OH, this is sooooooo good!"
After dinner and once I put the girls down for bed, we sat outside and remembered other wonderful meals outside on the deck in days past. The deck has truly been such a source of fun and fond memories for us.
- Brandon reminded us of his first dinner here when I brought him home to meet Mom and Dad. We had steak and chicken and my parents got the biggest kick out of how much he could eat.
- I remembered the year after college that I lived back at home with Mom and Dad and how I was working in a restaurant so I would lay out on the deck every day during the summer and read books and work on my tan....I remember how I was hating life back then but now I would do anything to have a few days to read and sun on the deck again without trying to corral two toddlers!
- Dad remembered falling off the ladder while building the deck...(we're glad he's still here to remember that). What a miracle that he wasn't seriously injured. (For those of you who haven't seen our two story deck, Dad fell off the ladder from the top of the top level onto the concrete driveway and had the ladder fall on top of him...and then walked away!)
- Mom enjoyed the flowers that Karen had planted all around the last time she was here, and mentioned how the deck has been such a peaceful place (especially in the morning with a newspaper and coffee!).
Anyway, it was a wonderful night. It was a night that I will cherish in my heart for years to come. I got some pics, but forgot the cord thingy that connects my camera to the computer, so I'll have to wait to post them.
Tuesday, March 9, 2010
Psalm 30
Yesterday I was visiting Mom and we decided to do a little Bible study. She said, "I want to look up a verse about joy because I feel like I need some more joy in my life." So I remembered a song verse that says, "Though sorrow may last for a night, His joy comes in the morning" and I looked in the back of my Bible for a reference to that verse. I found it in Psalm 30, and read the entire psalm out loud.
1 I will exalt you, Lord , for you rescued me.
I thought, wow...this is a great passage that we need to really think about. So I personalized it for Mom and read it out loud again.
1 I will exalt you, Lord , for you rescued my mom.
You refused to let Pulmonary Hyperstension triumph over her.
2 O Lord our God, we cried to you for help,
and you restored Mom's health.
3 You brought her up from the grave, O Lord .
You kept her from falling into the pit of death.
4 We will Sing to the Lord , all us who know you!
Praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime!
Weeping may last through the night,
but joy comes with the morning.
6 Before Pulmonary Hypertension, she said,
"Nothing can stop me now!"
7 Your favor, O Lord , made me as secure as a mountain.
Then you allowed this to strike, and her pride was shattered.
8 She gave her heart to you, she cried out to you, O Lord .
She begged the Lord for mercy, saying,
9 "What will you gain if I die,
if I sink into the grave?
Can my dust praise you?
Can it tell of your faithfulness?
10 Hear me, Lord , and have mercy on me.
Help me, O Lord ."
11 You have turned our mourning into joyful dancing.
You have taken away our clothes of mourning and clothed us with joy,
12 that we might sing praises to you and not be silent.
O Lord my God, we will give you thanks forever!
Mom said, "it's like He wrote that just for me."
A cool thing about it is that I don't remember ever reading this passage with these 'eyes'...through the lenses that I did yesterday. God uses His Word to touch our hearts when we need it. He perfectly provides what we need at the time we need it.
It is quickly becoming a passage that I am learning to confess over Mom. She was once lost and didn't know her need for God, but now she has accepted Him in her life and knows she is His child. He will get glory from anything, whether life or death...but we believe that Mom has so much in her that she will be used in the Kingdom for great and mighty things after she is healed.
1 I will exalt you, Lord , for you rescued me.
You refused to let my enemies triumph over me.
2 O Lord my God, I cried to you for help,
and you restored my health.
3 You brought me up from the grave, O Lord .
You kept me from falling into the pit of death.
4 Sing to the Lord , all you godly ones!
Praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime!
Weeping may last through the night,
but joy comes with the morning.
6 When I was prosperous, I said,
"Nothing can stop me now!"
7 Your favor, O Lord , made me as secure as a mountain.
Then you turned away from me, and I was shattered.
8 I cried out to you, O Lord .
I begged the Lord for mercy, saying,
9 "What will you gain if I die,
if I sink into the grave?
Can my dust praise you?
Can it tell of your faithfulness?
10 Hear me, Lord , and have mercy on me.
Help me, O Lord ."
11 You have turned my mourning into joyful dancing.
You have taken away my clothes of mourning and clothed me with joy,
12 that I might sing praises to you and not be silent.
O Lord my God, I will give you thanks forever!
I thought, wow...this is a great passage that we need to really think about. So I personalized it for Mom and read it out loud again.
1 I will exalt you, Lord , for you rescued my mom.
You refused to let Pulmonary Hyperstension triumph over her.
2 O Lord our God, we cried to you for help,
and you restored Mom's health.
3 You brought her up from the grave, O Lord .
You kept her from falling into the pit of death.
4 We will Sing to the Lord , all us who know you!
Praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime!
Weeping may last through the night,
but joy comes with the morning.
6 Before Pulmonary Hypertension, she said,
"Nothing can stop me now!"
7 Your favor, O Lord , made me as secure as a mountain.
Then you allowed this to strike, and her pride was shattered.
8 She gave her heart to you, she cried out to you, O Lord .
She begged the Lord for mercy, saying,
9 "What will you gain if I die,
if I sink into the grave?
Can my dust praise you?
Can it tell of your faithfulness?
10 Hear me, Lord , and have mercy on me.
Help me, O Lord ."
11 You have turned our mourning into joyful dancing.
You have taken away our clothes of mourning and clothed us with joy,
12 that we might sing praises to you and not be silent.
O Lord my God, we will give you thanks forever!
Mom said, "it's like He wrote that just for me."
A cool thing about it is that I don't remember ever reading this passage with these 'eyes'...through the lenses that I did yesterday. God uses His Word to touch our hearts when we need it. He perfectly provides what we need at the time we need it.
It is quickly becoming a passage that I am learning to confess over Mom. She was once lost and didn't know her need for God, but now she has accepted Him in her life and knows she is His child. He will get glory from anything, whether life or death...but we believe that Mom has so much in her that she will be used in the Kingdom for great and mighty things after she is healed.
Wednesday, February 24, 2010
Sufficient Grace
2 Corinthians 12:9 But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
I spent some time with mom and dad this week. She had been to Cleveland again earlier in the month for a checkup, and was in good spirits during that visit. She mentioned how beautiful all the snow was as they drove up to Ohio. Her checkup went as well as possible and Mom and Dad were encouraged to know that there are about 4-5 'hits' each day: lungs that become available that go through the process of being matched to a donor...That's a good number, but so far, no matches. The doctors told them, "We really like you. You're special, and we soooo want to find a match for you!" If only that was all we needed! Mom would have been running around with Ella and Allie long ago!
After returning home, Mom had some chest pains, which resulted in her waking Daddy up in the middle of the night and going to the ER in Columbia. She was diagnosed with pneumonia and put on many antibiotics and meds to help ease her pain. She was released after about 6 days.
Since then, she's been feeling very puny. She's been vomiting, coughing, and generally too weak to do much more than lay in bed.
I took the girls down to see her and bring some encouragement on Monday. She got some good snuggle time with Ella in the bed as they watched Dora the Explorer and other cartoons and took some naps together. It's getting tougher, though, to be able to bring the girls down because of all the activity they bring with them. It's just too much for her to endure.
I had a few special moments with her by ourselves. I was able to give her a massage on her back and head (she's a sucker for a back scratch and head rub! That must be where I get it from, cause I love it, too).
She's getting weaker, to put it bluntly. I am just past the sugar-coating stage. Is that OK? I don't even know who reads this anyway, so it's more like a journal for me to document the journey when I get a few minutes here and there.
God told us that when we are weak, He is strong. When we are wasting away, He is being built up. He said that His grace is sufficient for us. His power is made perfect in our weakness.
I am seeing that happen in Mom. The peace that overwhelms her circumstances is precious. She has fought a good fight. She is still fighting, and I believe that she will finish well, whether that includes coming out on the other end of a successful lung transplant or not. God is becoming more in her as she becomes less. Her gentle and contrite spirit God will not reject.
And I continue to give God glory for what is happening. I will not blame Him. He is the author of LIFE, not death. He has sustained us through this. And He promises that this world is not the end, but the beginning of an eternal life which He has provided for us through his Son, Jesus Christ. I am thankful that both she and my dad have put their trust in Him alone.
So if there is anyone else reading this, I encourage you to continue to seek Him as you think about Mom. I pray that the eyes of your hearts will be opened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.
I spent some time with mom and dad this week. She had been to Cleveland again earlier in the month for a checkup, and was in good spirits during that visit. She mentioned how beautiful all the snow was as they drove up to Ohio. Her checkup went as well as possible and Mom and Dad were encouraged to know that there are about 4-5 'hits' each day: lungs that become available that go through the process of being matched to a donor...That's a good number, but so far, no matches. The doctors told them, "We really like you. You're special, and we soooo want to find a match for you!" If only that was all we needed! Mom would have been running around with Ella and Allie long ago!
After returning home, Mom had some chest pains, which resulted in her waking Daddy up in the middle of the night and going to the ER in Columbia. She was diagnosed with pneumonia and put on many antibiotics and meds to help ease her pain. She was released after about 6 days.
Since then, she's been feeling very puny. She's been vomiting, coughing, and generally too weak to do much more than lay in bed.
I took the girls down to see her and bring some encouragement on Monday. She got some good snuggle time with Ella in the bed as they watched Dora the Explorer and other cartoons and took some naps together. It's getting tougher, though, to be able to bring the girls down because of all the activity they bring with them. It's just too much for her to endure.
I had a few special moments with her by ourselves. I was able to give her a massage on her back and head (she's a sucker for a back scratch and head rub! That must be where I get it from, cause I love it, too).
She's getting weaker, to put it bluntly. I am just past the sugar-coating stage. Is that OK? I don't even know who reads this anyway, so it's more like a journal for me to document the journey when I get a few minutes here and there.
God told us that when we are weak, He is strong. When we are wasting away, He is being built up. He said that His grace is sufficient for us. His power is made perfect in our weakness.
I am seeing that happen in Mom. The peace that overwhelms her circumstances is precious. She has fought a good fight. She is still fighting, and I believe that she will finish well, whether that includes coming out on the other end of a successful lung transplant or not. God is becoming more in her as she becomes less. Her gentle and contrite spirit God will not reject.
And I continue to give God glory for what is happening. I will not blame Him. He is the author of LIFE, not death. He has sustained us through this. And He promises that this world is not the end, but the beginning of an eternal life which He has provided for us through his Son, Jesus Christ. I am thankful that both she and my dad have put their trust in Him alone.
So if there is anyone else reading this, I encourage you to continue to seek Him as you think about Mom. I pray that the eyes of your hearts will be opened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.
Monday, February 1, 2010
Caretaking
Giving around-the-clock care is difficult, to say the least. My dad, as I have mentioned before, does a pretty amazing job at keeping Mom alive, comfortable and cared for. But things can get pretty tense (as anyone would imagine) when one's life is flipped up-side-down and the day to day activities and thoughts literally revolve around another's care. So here are a few tips for anyone who finds himself in the role of a caretaker.
15 Tips to Help You Care for Your Family Yourself
- Eat smart and exercise. You'll be surprised at the energy you'll gain from choosing nutritious foods and finding time for some daily physical activity.
- Get plenty of rest.
- Be kind to yourself. Give yourself credit for what you do.
- Set realistic goals and expectations.
- Cut yourself some slack. Nobody’s perfect. Even the best caregivers occasionally find themselves getting impatient, stressed or frustrated. Learn to think about these feelings not as evidence of your failure but as cues that you need some time to yourself.
- Schedule “me time.” Caregiving is a job and rest is your earned right. Reward yourself with respite breaks often.
- Set limits and let everyone know what they are.
- When people offer to help, accept the offer and suggest specific things they can do.
- Watch for signs of depression, and don’t delay in getting professional help when you need it.
- Grieve your losses, and then allow yourself to dream new dreams.
- Learn what helps you relieve stress – keep a list and use it. Try walking, reading, listening to music, take up a new hobby, or take a nap!
- Remember your spiritual health. You can make good use of your own spiritual beliefs to cope during difficult times. Many caregivers find great solace in meditation, prayer or time spent in nature.
- Share your feelings with family and friends.
- Seek support from other caregivers. There is great comfort in knowing that you are not alone. Talk with other caregivers at PH support group meetings, and try to arrange for a caregiver support group to be held at the same time as your local patient group. Also be sure to sign up for our email group for caregivers and other family members of PH patients. Join PHA Family now (Requires a free Google account. Please allow a short delay while your group membership is processed.)
- If it gets to be “too much,” talk to your doctor, another healthcare professional or a member of the clergy.
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