How the diagnosis of an autoimmune immune deficiency disease filled me with more Grace
than I ever imagined and how I am now living in that Grace each day.

Monday, October 29, 2012

Dancing with Jesus

On Monday, October 15 at 12:25 pm my Dad, Grandpa to my kids, went home to Jesus, 12 days after being diagnosed with Cancer. We know that he passed right from this life into the arms of Jesus, and his passing was as peaceful as could be. I was holding his hand, Carl was holding me, and my Aunt Noni and cousin Andrea were in the room. 

I had to go to the doctor to get a stitch in my nose removed because it had become infected, and right as I got off the exit in Rock Hill the nurse called to let me know that I should get there as quickly as possible, that his breathing was very labored and that his fever would not come down anymore. She told me that she told him (in her adorable Korean accent), "You hold on for you little girl, she be here with you very very soon!" 

My doctor was amazing and moved the person before me so I could run in and out, and Carl met me there. He was breathing with 3-4 seconds between breaths, and with every breath we were on edge waiting for the next. We talked with him, reminding  him of all the good times, and telling how much Katie and Topher love him. The Hospice nurse got there and just as she put the stethoscope on his chest to listen, he took his final breath, and she looked at me and shook her head. 

I prayed that the Lord would give him a peaceful passing, with no pain, and that he please give me one more sign so I would know he was in heaven. Right at that very moment, the sun came out. It was a very dark, rainy, dreary morning, and all of a sudden, the sun shone into the room. Carl and I spent some time with "him" before we left, but in all my sadness, I knew he was with Jesus. 

It has been two weeks today, and I am still processing. I am numb at times, angry that I didn't get to spend more time with him talking about the Lord, regretful that I had the nose surgery when I did because if I wouldn't have had it when I did, I would have been able to spend more time with him..... But the Lord knew what was going to happen, and I did not. I have boxes in my front office right when you walk into my house that I need to go through, a storage unit room that I need to sort and empty, and financial things to handle and bills to pay. I am over the lay in the bed or lay on the sofa and watch TV stage, but I am still mourning. I think I am also mourning my Nanny and Grandma again, too. I am also mourning my health, since I have had so many health crises since Dad moved here and it seemed I was either sick or taking care of Dad since March, and we didn't get time to have any fun. 

Please continue to keep our family in your prayers. We need it. I need it. 

R. Michael Jackson 
June 22, 1942 - October 15, 2012

Saturday, October 13, 2012

Feeling Jesus in the Pain

We are nearing the end with my Dad. It is so hard to sit at his bedside, watching him labor with each breath. But I am thankful to be here for those rare moments, like earlier this afternoon, when he held my hand and said, plain as day, with his eyes closed, "I love you!" We were all in the room, Katie, my cousin Andrea, my Aunt Noni, and me. On Thursday he was moved to a skilled nursing home and is under Hospice care now. He has become all but unresponsive, and it pains me to see him like this. 

Pastor Johnny Caruso, one of Katie's youth pastors, came and prayed with Dad this morning. The nurse was about to give him his morphine and I asked her to withhold it until we prayed. Johnny talked with him, and he grunted and said Katie's name and Topher's name. I told him Topher was with Daddy, but that Katie was here. She was standing with her arms around me, holding me. She is such a strong girl. I gave her the option of going with Daddy or coming with me, and she wanted to come see Grandpa. Johnny asked if he could pray, and Dad tried to nod his head. So Katie held his hand and I put my hand on his arm, and Johnny explained that he was going to pray and Dad could just think the words in his heart. 

When he was done, Dad tried to smile. Johnny asked if he prayed with him and if he knew for certain that he would be going to Heaven, and he nodded his head slightly and tried to smile. Katie and I were sobbing, and Johnny said to me, "That's a smile! He's at peace. Your daddy's going to heaven." Katie just had tears running down her face, she has been praying for her Grandpa since she knew to pray. I was just crying, because I have been praying for my dad since I was 6. I know he believed in Jesus, and he prayed, but I needed a sign that he knew for certain that he knows where he will be spending eternity, and when Caren and I talked with him last week he still wasn't sure.

It was the prayers of all my faithful friends that softened his heart. I know that the Lord prepared this time just for me and Katie. We told him after he received Jesus that he can go now. We know he's done fighting. I told him that he did a good job with me, and that I am a woman now, and between Carl and God they have this covered (and all my friends, because, let's face it....I honestly need help in so many ways...but I didn't tell him that!), so he doesn't have to hold on for me or Katie or Topher. We don't want him to suffer, we want him to dance on healed legs with Jesus. He used to love to dance, and would dance around with me to music on the record player in the living room of his apartment. He will have a perfect body, and will no longer be in pain.

I am peacefully sitting here with him as he struggles with his breaths and is heavily medicated, because I told him I wouldn't let him be alone. But even if I am not here, I know now that he will not be alone. Because when he takes his final breath here on earth, he will be taking his first breath in Heaven, and he will be welcomed by My Jesus.

Please keep praying for us. Because even though we have our sign, this is still hard. 
Grandpa with Katie & Topher at a picnic in the Spring. One of the last times he really wanted to go outside because it was "too hot in the South" over the Summer.

Wednesday, October 10, 2012

ODP12 Days 8 & 9

It has been one of those weeks. Monday was what I refer to as Hydration Day. It is the day before my IVIG infusion when I drink more fluids, mostly water and Gatorade, than I think is humanly possible. Of course, that also means I pee more than a woman who is 9 months pregnant, but it helps me avoid the worst of the side effects (migraine, nausea, rash, chills & shaking, increased blood pressure) that I tend to suffer from. This is easier said than done, especially if I am running around, taking care of children, and visiting my dad at the hospital. All of which I did on Monday.

Before I left Dad on Friday, he asked me to bring him a Dairy Queen Blizzard with Pecans. I put my dress on, ran to the mall to the DQ, and brought him a Blizzard. When I walked in, I told him that I had his Blizzard. He was happy to see me, but in a panicked voice told me to open the window. I opened the curtains, and he said, "I don't see any snow, be careful driving!" He talked about it snowing for the next 15 minutes, until he asked my why his hand was cold. I told him he was holding his "milkshake" (didn't want to alarm him about snow again!), and he was convinced that the bats were cold and that they shouldn't be playing baseball in the snow. He's very disoriented, but he did tell me he loved me and knew that I was in the room. I did have to laugh, he told me to be careful driving in the snow when I left.

Day 8: Dress; brown cardi (5 years old), brown tights, brown tooled Dansko clogs, jade cardigan from Target. Double chins are for your entertainment only....I was laughing at my photographer.....
My photographer wearing her dress; brown cardigan from Target, tights, brown cowboy boots from Target, beautiful scarf as a belt on loan from her BFF neighbor, and necklace made by women in Africa, gift from MOPS Field Leader Training.

Went to bed saying I wasn't going to wear the dress to infusion, but decided that I really should. Dress + layers actually kept me warm in the 57 degree room, and I knew I wouldn't be wearing it on the 10th, recovery day. 

Day 9: Dress, grey & ivory striped tee from Target, 4 years ago, grey leggings, charcoal cardigan, Infusion zebra slipper boots (gift from the Ah-mazing Tracey Solomon), and IV pole that was going to the potty with me when this shot was taken. I also had my Alegria patent Mary Janes on when I took the slippers off. Dress is actually perfect for accessing my port.

There are three of us who have these boots. Three of us who pray for each other, who are dealing with physical illnesses and other crises, three of us who lean on each other when we feel like we can't do it on our own. At MOPS Convention this year, Tracey found these in the gift shop. She bought them for me, Athena and herself. When we wear them, we look down and know to pray for each other. They are Zebra print for my CVID, they are Cowboy boots, for Athena who lives in Montana, and they have blue designs on them, for Tracey's husband Kyle who is courageously kicking Prostate Cancer's Butt!! 

So today, I did not don the dress. I slept until noon, argued with a Case Worker that she NEEDS to keep me in the loop, fought with my Dad's 401k company, and slept in between with a major headache but no chills or shakes. Tomorrow, I will re-assess and decide if I am going to continue with the project. I have so few days to be with my Dad, and I am not sure if I want to deal with the Red Dress and making it look presentable. 

Oh, and I made several of my friends giggle when I put out an APB for Toilet Paper on Facebook tonight. Mama can't drive, we have a dead battery in the van, and my sweet hubby has been running carpool and Boy Scout errands since he got off work, And Topher is on MIRALAX!! We need Toilet Paper, people!

Sunday, October 7, 2012

ODP12 Interruptus

Whenever I start an awesome project, I expect some interference. I went into the October Dress Project this year thinking I would be too tired to do laundry, that I would be sick with this whole spleen/mono thing and wouldn't be able to keep up the way I wanted to, or that I just wouldn't get out of bed and get dressed. But I wanted to do it for several reasons.

  • 1) I had SO MUCH FUN last year doing the project!
  • 2) Especially this year, I knew that not thinking about what to wear would be a bonus, even if I just threw on the same sweater every day. 
  • 3) I was hoping to show people, through my daily blog posts, what it is like to live with a chronic illness that causes me to to visit WAY too many doctors during a week than anybody ever should.
  • 4) I wanted to again remind my children that WE. HAVE. TOO. MUCH. STUFF!

Day 1 went off without a hitch! Day 2 began what I will refer to as "The Beginning of The End". Last week, I had a little one home with a fever and a stomach ache. We went to the doctor, and he was diagnosed with "a virus".
(As an aside, I am NEVER one to complain about wasting a copay to find out that my child ONLY has a Virus. I have had too many times where I find out that a child has a fever and then receives a scary diagnosis. Even Katie ended up having a "virus" that turned out to be a ruptured appendix. So I never mind paying for peace of mind.)

As we got settled in at home with some natural soda, popsicles, a movie and heating pad for my blasted spleen, I got a phone call. My Dad was having so much pain that the Home Healthcare Nurse was suggesting that he go to the ER to find out what was going on. He couldn't stand up, and they couldn't change his dressing.

Because I had fever boy at home, and was already feeling worn out, sick and nearing the end of an infusion cycle, we decided that I would stay home until they figured something out. He had just been there a few days ago, so we weren't expecting anything. 4 hours later, I received a call and my dad was on the other end. He said, "Do you know what it means to have a M A S S?" (this he spelled out). I tried to hold it together and we discussed that we would wait to hear from the doctor when he read the report in the morning. They were admitting him until that time, but the ER doctor was certain that something was going on with his spine.

Cliff note version: My dad has cancer. It gives me chills to type this. Because it was in his bones and 2 of his vertebrae were crumbling, they know it's stage IV. A CT on Wednesday showed that he has lesions in every organ in his body. Based on a mass that the doctor found, he is pretty certain it started in his lungs. My Dad is 70 years old, and no treatment will cure him. So we have decided together that we are going to keep him as comfortable as possible, bring the kids in to visit, and spend as much time with him during the time he has left.

Did I mention that Wednesday was my Anniversary? And I had an inflammation in my foot that had me hobbling to my doctor that same day and then going to the hospital for an ultrasound to rule out a blood clot? Thankfully, it was negative, but I did get to pop in to see Dad both before and after my procedure.

I almost threw in the "dress" on Thursday. But then I thought that I would have to think about what to wear, as well as all the other decisions that I have to make. And I had to be at the Children's Hospital at 7:30am for a gastro appointment with Topher so I didn't want to think about what to wear. I decided that this was a wonderful blessing the Lord has given me this year: One less Decision.

Please keep my family in your prayers. Please pray for my Dad. Please pray for his salvation. I was gone for 24 hours on Saturday to celebrate my Anniversary and he declined. (another aside: His doctor ROCKS!! I wasn't sure if we should go, and he was adamant that Dad wanted me to get away, and he wanted me to have time alone with my husband before we had some serious decisions to make. He also said, "You have a horrible disease, and if you were my patient, I would want you to be rested up before your next infusion and before you start this next phase. So get some rest, and some time with your husband." Another blessing in the midst of this trial.) I am worn out. 

So here are my pictures for Days 2-7.

Day 2: Dress, Gray Target sweater (4 years old), new silk scarf (gift from my friend/hairdresser Monique), OLD black Dansko sandals. (Took Topher to pediatrician, got my hair cut)

Day 3: Dress, purple pashmina gift from my Mom last year, favorite silver opal earrings, 
purple Alegria sandals, Lily Kate who kept jumping on me. Went to my doctor, had ultrasound of leg to rule out blood clot, visited Dad, felt guilty for leaving Topher with friend most of the day.
Day 4: Dress, super soft brown 3/4 sleeve cardigan, gold CZ earrings (gift when Topher was born), Bronze Alegria sandals. Taken at Children's Hospital gastroenterology department. Spent 3 hours there with Topher in the morning. Then came home and put on jammies and cuddled together. 

Day 5: Dress, purple ruffle scarf (gift from a friend), Zebra ribbon CVID awareness hat (Petal Chic Boutique, selected Zebra ribbon at checkout), purple Alegria Sandals (These are my very most favorite shoes right now!)

Day 6: Dress, Ford Warrior In Pink Race Bandana around waist (hubby got it at the Komen Race for the Cure in the morning), cordovan Dansko Clogs for walking at the Renaissance Festival. Sitting with Carl in the Cabriolet to get a ride back to the front because my leg/foot was terribly swollen. But we had a great time celebrating our Anniversary!

Day 7: Dress, black/white stripe sweater (was my Nanny's, has to be at least 10 years old), black tights, Alegria Paloma patent mary janes. Today we went to visit a nursing home where I almost had a meltdown, then the new Whole Foods in Charlotte on our way home. Katie and I visited Grandpa, and when she went to Youth Group I finally had a chance to REST! 

Monday, October 1, 2012

ODP12 Day 1

This morning I didn't want to get out of bed OR get dressed. I thought that I would be so excited to get started with the project that I would jump out of bed. Not so much. I was up half the night with pains in my leg, deep aches that would not allow me to get comfortable. I was also coughing. I knew that little man would be sleeping in since he was staying home sick, so I would be able to sleep in a bit. 

I had a Chiropractor appointment because I hadn't been in over a week, since before my surgery. So I got up, put on some makeup, and tried to get my photographer to feel well enough to snap a photo. Poor kid, he was really feeling shaky hence the slightly blurry pictures. 

The dress - by itself. Lands' End Cotton Modal Fit & Flare Dress, bought on sale with coupon and free shipping. Machine Wash & Dry (but I will probably hang it to keep it looking good).

Day One: Black/Ivory Pinstripe Flare jacket (TJ Maxx), Alegria shoes (super on sale), favorite CZ drop earrings, glasses, wedding ring and a spot of makeup.

I did come home and put my jammies back on to take a nap. Hoping to feel better tomorrow....