Wednesday, December 22, 2010
Blessings to you as we prepare our hearts for the coming of the Savior! Merry Christmas!!
Monday, December 20, 2010
His FEV1 was 31% and his weight was not as low as he usually gets. All good stuff. He started the same regimen of antibiotics as before, Vancomycyn, Tobra and Cipro. As of yesterday he was still coughing a lot. When I asked the nurse what was up she said that his cultures showed that he would probably be more susceptible to Cephepime. So they stopped the Tobra and started the Chephepime.
Mike has been having quite a bit of back pain due to sciatic nerve troubles. Our chiropractor took a look and did a treatment but then Mike got sicker and didn't go back. They have been giving him some muscle relaxers but that only helps until it wears off. These long hospital stays of sitting and lying in bed are raising havoc on his back. Today he got some physical therapy. They are giving him stretching exercises to help. The not so good news he got today is that they would like him to continue the Cephepime at home for another week once he is discharged. The good news is he still gets to be home for Christmas and he will not have to do the MRSA drug that runs 12 hours a day. Praise God.
It is tough to watch your child suffer - it doesn't matter what their age. What makes it bearable is witnessing Mike's amazing attitude. He continues to make the most of his situation. He doesn't focus on what he CAN'T do but immediately finds and focuses on what he CAN do. Watch this video clip to see what I mean.
Mike took Uncle Bob's guitar and continued to practice. He bought that little helicopter to have something fun to torment the doctors and nurses with. Several therapists and nurses have stopped by to give it a try. He continues to make the best of his isolation. My heart is pieced back together when I think of how blessed I am to have this young man in my life. Love, love, love you Mike. You are so brave and have an amazing attitude. I learn so much from your example!
I have been very fortunate to be able to go see Mike almost every weekend he is in the hospital. With two other small children this is not an easy accomplishment but I have had so much help from so many wonderful people. Here is just a small sample of my recent blessings.
My boss Pete has driven me the almost two hour trip (one way) to Madison three separate weekends. Last weekend, with the threatening weather it didn't appear I would get to go. I was so disappointed. My heart was breaking. I wanted to go. At the last minute he convinced me we could do it and we went down and tried to beat the snow storm back. He white knuckled it and got me home safely. My heart was so full getting to visit Mike. The roads were ugly. Pete didn't make it all the way home and got stuck and had to walk the rest of his way home. He spent a good portion of the next day digging his car out. God bless you Pete!
My mom and dad brought food to put in my freezer. This helps me be able to take the time to go down to see Mike - when I know there is food in the freezer and I won't have to find time I don't have, to cook. My young boys have all the expectations of normal boys their age and grandma brought goodies and they are thrilled. God bless you Mom and Dad!
Lynnette did some Christmas shopping for my small godchildren. She also brought a pan of lasagna and some cookies and fudge. I am so grateful for her help. God bless you Lynnette!
Nicki gave up her Sunday to drive down to Madison with me and Pete. She and Pete went to the Mall and continued to knock out my Christmas gift list while I got to visit with Mike. Thank you Nicki. I so appreciate you giving me your time. I appreciate the chance to talk and not be judged. I so often just keep things in because I am afraid people will judge me or I will bumb them out. Nicki and Pete just let me talk and they listened. I really needed that. Thanks for putting up with my babble! God bless you Nicki!
Pam has brought food. She made Mike his favorite pie, lemon meringue and her hubby Ray made Mike the most amazing spaghetti. He loved every bite! Pam brought over a huge bowl of unfrosted cookies. Richie had a request to frost cookies this year. Pam made that possible. She made the dough and baked the cutouts so Richie and David got to decorate cookies for their brother who is in the hospital. My heart took a picture and I grabbed one with the camera too! They were so happy to be able to send something to their brother. God bless you Pam and Ray!
Grandma Kristi came over and watched the boys so I could go to Madison and visit Mike. Paul had a lot of work to do at school and he was able to get that done without having to leave the boys at home or pay for a babysitter. The boys had a blast playing games and eating pizza, donuts, and cookies. God bless you Kristi!
We are thankful grandma Nettie and grandpa Bob were not injured in their car accident this week. No matter what is going on in their lives they continue to help us by calling, sending goodies and just being wonderful people! God bless you both!
There have been numerous other people who have sent Mike and me cards and little gifts. People I have run into out shopping and have offered words of encouragement and prayers. The Pastors from our church who continue to make the trip to visit Mike. Thank you all for your words of encouragement, for your prayers, cards and support. We couldn't get through this alone. God bless each and every one of you! Blessings to you. Love, love, love. Peace! And THANK YOU! And the laughter - it is such wonderful medicine - thank you Pipe Fab for the laughter. Hugs to you.
Matthew 25:35 "For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me. . . Verse 40 "The king will reply, "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."
P.S. Mike just posted this on facebook:
i have CF and it sucks it hurts.
but i have an amazing family a wonderfull girlfriend and amazing friends
and ill b on home iv's for christmass
but ill b home
some things u just cant unrap
but that dosnt meen there not a gift
I heart this man. PFTs again on Wednesday. I will post his numbers when I get them. Blessings to you.
Thursday, November 25, 2010
I have a little book next to my computer where I have recorded things I am thankful for. Here are some of my thoughts from the little book:
I am thankful. . .
- for my sister
- that God blessed me with a daughter
- for the imagination of my children
- one-hour photos
- FREEDOM and for the people who will ensure that
- for my scrapbook hobby
- for movement
- that my hubby takes his role as spiritual leader in our family seriously
- for church and the Word
- for good surgeons and patient nurses
- for FAMILY and getting together
- for church fellowship
- for discipline, self-control, and the guidance of the Word
- that all my needs are met
- for Mike
- my husband and his kind and generous heart
- for Lynn's help
- for God's free GRACE
- to be able to give back
- that God protects our children even when we can't
These are in no particular order and by no means encompass all of my blessings. They are just a few from the list of many - each entry has the date I wrote it and sometimes an explanation of why I wrote it. Fond memories. I am thankful I took the time to do this.
It is always a good time to remember all the blessings.
And speaking of blessings. I am so blessed by this little boy. The innocence and wonder of his little mind blesses me. Here he is with the Fleet Farm Toy Catalog. Kept him quiet for over 30 minutes!
I am so blessed!! I am blessed by each and everyone of you. Thank you for the cards and words of encouragement. I am in awe of those of you who reach out to us and help us during this trying time.
Happy Thanksgiving. Blessings to you.
Friday, November 19, 2010
He did PFTs on Tuesday. FEV1 was 40%. We are so thankful his numbers have come up. It is hard to swallow that this is his new best. 10% difference is making a big impact on the quality of his life. Mike's spirits are better. He is such a blessing. He is so thankful to be out of the hospital. I know he continues to make the best of his situation. He and Missy went out tonight. He is looking forward to Thanksgiving with his father's family. He is going to Uncle Scotts and hoping he and Uncle Bob will help him with his guitar. Such strength and perseverance. I remain totally inspired by his attitude.
The results of his test really packed a punch. It is hard to be happy. I am so thankful he got better than he was. I am still praying he will come back up to at least 50%. I remember February when I wondered if he would ever see 40% again. The dips are hard to take. Of course he wants his health back. One of the difficult things for CF patients is that they have to work just as hard if not harder to maintain a lower level of health as the disease progresses.
Let's put it this way. If you had to work just as hard at your job as you do now, or harder and they cut your pay in half - would you be happy? Now in an economy like this, you may still be thankful you have a job and some money to help towards your support but it would probably be difficult to get to happy.
We are content.
We are blessed.
Mike will persevere.
My heart is a little heavy.
God will pick me up - - - he comforts me.
Thanks for reading. Thank you for your support.
Katie did a fund raiser to help raise money for CF. It was in the newspaper. I will try and find a link and post it here. Last night she helped in a benefit called Climb for a Cure. Firefighters and policemen climbed flights of stairs to raise money for CF. God bless you all. Thank you for helping us fight. These men and women raised $60,000. Thanks too for all the volunteers who helped put this event together. We are thankful for each and every one of you.
Love, love, love. Blessings to you.
Saturday, November 13, 2010
He doesn't feel a whole lot better. I pray the numbers come up.
He knows others (family and friends) feel badly that he is sick and not doing well. . . he doesn't like to think he is causing anyone else pain . . . and he knows it is the CF but it is hard for him to separate. He is struggling.
I am praying for him. I hope you are too. He is strong and brave and such an inspiration to me.
Thank you for the prayers and support. Blessings to you. Love, love, love. Truly, deeply . . .
P.S. He asked me to tell Uncle Bob thanks for letting him borrow the guitar.
Monday, November 8, 2010
Mike was in pretty good spirits. He was playing his guitar when I got there. He had slept most of the morning. He is using his computer to learn to play songs. I love the spirit and courage of this young man. I am in awe of him.
The medicines kind of make him sick. I had to pull it out of him. We thank you for your prayers and support. Mike makes this look easy and it is not. He is still coughing a lot. They are able to do chest PT again. No more hemoptysis. Praise God. Mike said to tell you he is working on a song about CF. He should be done with the lyrics soon. I'm hoping to catch it on our flip and post it on you tube for you. More to come. Miss you already Mike.
In other news. David took off his shirt tonight and showed me how he learned to make flarpy noises with his arm pit. He is so proud of himself. Really??? Honestly, it made me laugh.
Faith, Courage, Love..........love, love, love.
Blessings to you.
Saturday, November 6, 2010
Thanks for the prayers. Thanks grandma Nettie for the cookies and brownies. I'll take some to Mike if I get to go tomorrow.
Blessings to you.
Friday, November 5, 2010
It's MRSA that is growing in Mike's lungs. The word fight takes on a whole new meaning. Mike is so brave and he puts things into perspective. The doctors are trying a different medicine to fight the MRSA and we are praying he will be MRSA free after this fight. He is thankful that he still has the option of transplant, despite this news. He is planning to stay inpatient for most or all of this hospitalization. FEV1 is at 26%.
Please keep Mike and our family in your prayers. He will have to fight even harder on this one. He will be on Vancomycin and it runs 4 times a day at 3 hours each. This will be on top of Cipro and Zosyn. Each one of those will run 2 times a day for an hour each. Of course, this is in addition to the insulin and all other CF meds and treatments. Our church is having prayers for him this weekend. He will need strength, patience, and perseverance. I am so blessed that he has such a strong character. I love you Mike, fight, fight, fight.
Blessings to you!
Congratulations to Jeremy! I have a brother-in-law in the State Assembly.
Wednesday, November 3, 2010
Keep Mike in your prayers, please. And if you are on facebook - stop by and tell him hi. You can send cards to the address a few blog posts ago. He is going to try and stay inpatient for most of the visit.
Thankful that God is granting me peace. Love to you. Blessings!
Sunday, October 31, 2010
Sunday, October 24, 2010
Friday night I got to go to school and be a chaperone. I was looking forward to it - right up until Paul couldn’t join me because his back was hurting, meaning – yet one more thing we would do separately (not to mention missing the wedding we were invited to). Then I got there and a woman started to talk about how she was still sick after being sick all week. My thoughts started being selfish. I started wondering if I would be exposed to nasty germs. Someone had to go upstairs and help with concessions. I got out my anti-bacterial lotion and dosed up. The woman next to me said something and I was blunt. That’s not like me. She got big tears in her eyes. People can’t handle our pain and they shouldn’t have to. I felt badly for having said anything. I was thankful she offered to go upstairs. I could stay by myself and be the hall monitor. Pretty germ free.
I had a conversation with Mike yesterday. To be perfectly honest, Mike hasn’t made his decision about transplant yet. He is keeping his options open. He originally wasn’t all that keen on the idea. He remembered our CF friend named Doug who had a transplant and never made it out of the hospital. Doug spent 11 months in ICU. Mike had old, bad information. I felt badly. I didn’t realize that at only 8 or 9 years old he had picked up on some of what was going on. During Mike’s original transplant conversation his doctor asked what he thought. This was his response, “Well, some people say it’s great and others say, why build yourself back up just to go through it all again. I don’t know,” he shared honestly. He was trying hard to articulate his thoughts. I knew exactly what he was saying. So did the doctor. Mike is very thankful to have more time to think about his decision. It is a huge decision. He is not taking it lightly.
I told him that I would give him information. I promised to be real and let him know the good and the bad. We have been following Jim and Piper. They have had struggles and triumphs. They are heroes to me and I am thankful that they are allowing us to follow their stories. I found another perspective. I promised to share it all so this is what I shared with Mike:
I just felt today - again - like I feel so often. When will this end? When do I get a break? When can I feel better for a little while? And after seeing so many friends die, horribly, post transplant, I've ruled it out for myself, for now... after long deliberation. I reason that I want to die of CF, not of kidney failure or rejection - or worse, on the table as they slip in my lungs-to-be. I don't want to have to get so sick I am nearly dead... and to hope and pray for someone else to die. But on days like today I wonder... should I die twice, so I can live once?
Mike repeated the words, “should I die twice, so I can live once? That’s a really good way to put it,” he said as he smiled, pleased to have words now to articulate his feelings. I told him that a few months ago someone wrote in one of the forums that they wished they could see the “other” side of transplant. She explained how she could find a lot out about having a transplant but couldn’t find out a lot about the people who chose NOT to have one. Someone typed back something along the line that there wasn’t a lot out there . . . well, because a lot of those people are gone – stating the obvious. Mike and I laughed really hard. Now we’re not dissing anyone here. I guess you have to truly live with this day in and day out to understand. Everyone in the forum totally understood. No one was being a smart a$$ or anything. It just is what it is. I asked Mike if he had made a decision. He shrugged his shoulders. “Sometimes I think yes, it all sounds great and everything and other times . . . I don’t know,” as his voice trailed off. I told him I understand (as much as anyone without CF can). I will support whatever choice Mike makes 100%. I do NOT want to sway his decision one way or another – I really don’t know what my choice would be if I were in his shoes.
Today was church. The sermon was about forgiveness. I am thankful I am forgiven. There was a bake sale after – we steered clear. We took the little guys out for brunch. It was a buffet and I about had a meltdown. I can NOT do buffet’s anymore. Everyone touching the same utensils, no shield over the food. David spilled his milk and I swear we can’t leave a restaurant unless he has slid under the table or booth, touched the complete underside of the table, found and picked up every nasty thing on the floor . . . basically, being a normal 5-year-old boy.
We got home and I was agitated. I am tired of the thoughts that cloud my mind. Tired of the thoughts that can turn into temptations and sin. Thoughts about things like germs. Thoughts of the memories about the day we started talking about transplant and the doctor pointed at David and said, “That is your biggest risk.” I don’t want to think about risks of infection. I don’t want to think about insurance and Medicare. I don’t want to wonder how long we have until decisions have to be made. I don’t want to think that my son has to make life and death choices. I don’t want to think about how long he has left. I don’t want to think about whether or not I can or can’t help others because I might share germs with them or they might share germs with us. I don’t want to think about. . .
And I look at Mike and he is such an inspiration. He continues to fight. He continues to be positive. He continues to be real. And I learn from his example and I am forgiven. Just like the sermon reminded us. Mike is brave and he is a soldier. I am reminded to be thankful.
Today I am mourning the loss of innocence. The loss of freedoms and choices.
It isn’t good or bad.
It is real.
I will continue to pray and my heart will be healed – through forgiveness. Tomorrow is another day.
Psalm 28:7 The Lord is my strength and my shield;
Blessings to you.
P.S Sorry Becky for being so blundt. I was overwhelmed in these thoughts. Thanks for your understanding. And Seven Stars, who wrote the words above, thank you for your raw honesty.
Tuesday, October 19, 2010
I broke the golden CF rule. What is the golden CF rule? It is - blame CF, not the CFer, or the mom or the dad . . . CF stinks, not Mike or me or anyone else.
I had "the talk" with Richard. Richard is 10. Paul and I felt it was time. Richie has been dreaming about elaborate vacations as a normal 10 year old does. He wants expensive toys/electronics and asks to have kids spend the night. We have never had an extensive talk about CF. He hasn’t had many questions. But as he is getting older and more responsible Paul and I felt it was time to give him more information, to enlist his help. To ward off the possibility of him hearing something from someone else and not us first.
Mike's Senior pictures. He took his "little buddy" with him.
I took Richard out to lunch. I began, “Richard, do you know what Cystic Fibrosis is?”
“Yes,” he answered. “Mike has CF. That’s when your lungs are too small. So he (Mike) coughs a lot. . . (his thoughts trailed off for a moment) and he has to go in the hospital a lot because of that.”
“Well,” I began as I collected my thoughts, somewhat shocked at his lack of knowledge, “It does have to do with Mike’s lungs but they are not too small. . .” I then proceeded to tell him what CF is. He heard words like, infection, 50-100 pills a day, starvation, fatal, and money. His eyes kind of bugged out of his head as they got as big as saucers. He hung his head when I told him Mike’s life could be cut short by CF. I explained that we might not get to go on vacations to Disney World because CF can be expensive. I continued that Mike has to go to the hospital about every 6 weeks now and it costs lots of money. I explained about infection and that it is hard to have kids over. I explained how we have to be careful about germs and that is why mom always pushes the antibacterial lotions. I explained that he can help by helping to get things done around the house because Mike can’t help as much anymore. I told him he will be able to help his brother with things. He seemed to feel better that there was something he could do. I then told him to please not discuss this with the neighbor boy because he has two young sisters with CF and I told him it was up to his parents to talk to him. He said he understood and said the neighbor boy had told him his siblings had CF too. He seemed comforted that he wasn’t the only one dealing with a sibling with CF but understood not to talk about it with him.
I could tell he had had enough. I reminded him that God would provide and that we have our faith to lean on. He wasn’t sad but quiet. He is kind of a quiet kid. I was uncomfortable and didn’t feel like the talk went very well. I said a silent prayer and asked for the right words about half way through. I ended the conversation because I sensed it should end. We went home. Richard started his homework a few hours later. While he was doing his homework Mike came into the kitchen to get something to eat. He proceeded to have one of the worst coughing attacks he had ever had in front of Richie (next to where Richie was working). I was in the other room and peered around the corner. It wasn’t an intense attack that Mike sometimes has - the kind that makes him almost collapse and/or throw up, it was just kind of long. I noted the look on Richard’s face. He wasn’t looking up at Mike but intentionally looking down at his books and I knew.
I was online later with another parent (my age amazingly enough) who has a son who is 10. I wanted advice earlier but they weren’t online. I told this person about what I had done. As I typed, the thoughts of the day clouded my conscientiousness and remembering the look on Richard’s face disturbed me. I started thinking I had made a really bad decision to have this talk with Richard. I started thinking about how I had taken away his innocence. I thought about how Richard would probably never look at Mike the same again. Mike’s cough that had once seemed none threatening would now mean so much more. I felt I had burdened Richard’s little heart with too much. I started to melt down. The flood gates started to open and I could hardly see the computer screen. I was barely conscience of what I was typing – or trying to type at that point. I only remember this person typing the words, “He will be brave. He will be a soldier.” I got off the computer as quickly as possible because I needed to pray. I prayed and God immediately reminded me of the golden rule.
I had always taught Mike and Katie that it was OK to get mad at CF. It was OK to hate CF. I taught them that it wasn’t Mike disrupting our family or causing any pain – CF did these things and it was OK to not like CF. I was beating up on me. I was blaming me for burdening my son’s heart. God has allowed CF in our lives and he promises in Romans 8:28 that this will all work out for all of our good. God has a purpose for Richard to have CF in his life. Far be it from me to try and change that by putting up barriers to God’s will or God’s plan. I thought again of the words, “He will be brave. He will be a soldier.” Yes, he will be whatever God wants him to be because he seeks to do God’s will in his life. I am here to support him. I’m glad someone was there that night to support me and remind me of the golden rule during my momentary lapse in judgment. Thank you friend.
I hadn’t shared the golden CF rule with Richard in our talk – it’s the missing piece that made me uncomfortable. We will talk again.
God provided me with good counsel when I was ready to break. I opened my email the next day and there was such a nice message from Dana. She complimented me on my parenting after reading the post about Richie’s soccer experience. God continues to show me that HE is in control and providing for me and my family. Not me. He continues to give me exactly what I need when I need it.
I love Mike. I don’t like what CF is doing to him. God has a plan. We humbly submit to His plan. We trust in His promises. I am full. Shalom. Love, love, love.
P.S. I have a dream. More to come.
Saturday, October 9, 2010
Gail and Karrie - thanks for coming to the game! It was great to see you!
Tuesday, October 5, 2010
David nonchalantly running across the finish line - he took 7th place.
Gage ran his little heart out - he got a participation ribbon.
Proud daddy over to the right watches Gage get his ribbon.
Richie had to run a whole mile! He took 5th place.
There were 30 - 40 participants in each class so I'd say they did a great job! Congrats boys.
Thanks for continuing to support us on this journey. In the past several weeks I have enjoyed some incredible fellowship with many special adults. I love my kids - can't ever deny that but I am thankful for these times to be able to get out and about without the little ones. It has been refreshing. It has been a long time. A couple of weeks ago I got to have dinner with grandma Nettie and grandpa Bob and grandma Kristi. We had a really long wait for our food but it gave us an opportunity to chat and laugh. Nettie made us an awesome cake which the boys devoured promptly - thank you grandma Nettie. And Kristi gave me the nicest birthday gifts and Badger shirts for the boys - thank you!!
And mostly, thank you all for understanding when I fall off the map and lose contact and get overwhelmed. I owe some people a phone call or a visit. Thanks for understanding and hanging in there with me. Love, love, love to all. Take care - blessings to you!
Sunday, October 3, 2010
I prayed for him. But not just in the way you are probably thinking. Yes, I pray for Mike and all my kids on a regular basis keeping them close to my heart. But I mean I prayed for Mike. Let me explain.
I was 22 when I gave birth to Katie. What a blessing a child is. She was an exceptionally good baby to boot. I was blessed. She slept through the night at a couple weeks old, was perfectly healthy and happy all the time. This parenting thing was the best. I remember going into work one day a little teary eyed and bewildered. Four other women there had just had babies also and they came to work pretty ragged. One of them quipped to me, “Oh, what’s the matter, did your perfect baby finally keep you up last night for a change?” “No,” I quietly offered back, “actually, I got home at 5:30 last night and she was already asleep for the night.” “What is your problem?” the young mother quipped sarcastically but in fun, “I’d love it if my daughter slept at all!” “Well,” I continued a little choked up, “when I left this morning at 6 she still wasn’t awake. I never got to see her.”
I spent Katie’s first three months of life at home with her. It was so much fun being a new mom. One of the nights when Katie went to bed early I turned on the TV (I know shocking for me I really have watched the thing a time or two in my life) and a documentary was on. It was about special needs/handicapped children. The images are still in my mind. They gave story after story about special needs or handicapped children. They told how many of these children were physically and emotionally abused from infancy on. Exasperated parents unable to cope with the painful screams or behavior of these special children cracked under the pressure and hit, kicked, neglected and otherwise abused these children. Blind, deaf and diseased, defenseless children. I was sickened. I walked into Katie’s bedroom and peered over the crib. She was beautiful. How could anyone hurt a baby?
I went to bed that night and lay awake thinking about the images I had seen. As I was praying, before I fell asleep I can remember praying these words, “God, if you have to send a special baby down here, then give him to me, I’ll do all that I can to see that he isn’t abused." The words of a special poem I had once read ran through my mind. I couldn’t remember all the words to the prayer/poem but I knew it told of how special these kids were in God’s eyes. ------I was either just pregnant or about to get pregnant with Mike.
I remember all the screaming as Mike was slowly starving to death in my arms. I can remember winding up the baby swing and pushing the swing while he was screaming. I would talk to him to try and calm him as I hurried to feed Katie. I would finish and hurry back and pick Mike up as he was still screaming. Screaming from hunger. I can’t imagine the pain he was enduring. It almost broke me but I continued to pray. I prayed for Mike – for the relief of his pain and a diagnosis to make him better. I prayed for strength to continue to care for and comfort him. I prayed for all those other parents – my understanding was new and less judgmental. I still pray. I have not been a perfect parent but God continues to forgive me and bless me. I love being a mom. I wouldn’t trade any of it.
God continues to answer my prayers. He continues to give us just what we need when we need it. These last few years have been long and lonely. They have been full of love and laughter, sorrow and stress. And God continues to provide. Yesterday I checked in on my sister Lynn to “see how the other half lives” and we laughed really hard. Kristi sent me a joke that made me laugh until I cried. I got to go to a party with a bunch of people I work with and got to talk with real live adults. It was fun. John and Sue were wonderful hosts – they had a band and food and cake. It was awesome. Thank you! Thank you Sara and Nicki and Pete for encouraging me to go. I am refueled and full. I am grateful for all my blessings. I got a few emails from people who care and share their love. I am humbled. Thank you. Each and every one of you – thank you for taking the time to bless my life.
And in closing I will share the poem/prayer. When Mike was diagnosed with Cystic Fibrosis they told me he was considered to be handicapped because he had a fatal disease. I remembered the poem – I went on a search that took more than a year to find it. I no longer have the little card it came on, but the words are written on my heart. So from memory here is Heaven’s Child (sorry if I miss a few words – the memory isn’t as good as it used to be ;) Hope this blesses someone today – it did me:
A meeting was held quite far from earth
It’s time again for another birth
Said the Angels to the Lord above
This special child will need much love.
He may not walk or laugh or play
His thoughts may seem quite far away
In many ways he won’t adapt
And he’ll be known as handicapped.
So let’s be careful where he’s sent
We want his life to be content
Please Lord help us find the parents who
Will do a special job for you.
They may not realize right away
The leading role they’re asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they’ll know the privilege given
In caring for this gift from heaven
Their precious charge so meek and mild
Is Heaven’s Very Special Child.
If you are caring for a “Heaven’s Child” – God bless you richly in your walk. Remember the words of 1 Corinthians 10:13 “No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear.”
Thank you God, for entrusting me with this Heaven’s Child - for giving me the guidance and strength to continue to serve You. Amen.
Sunday, September 26, 2010
. . . I'm a soccer mom. Yikes. But as promised a Mike update first.
Mike update: Thank you to all those who have called, emailed, facebooked or gotten a hold of us somehow. We are glad you are here and we appreciate the support. Mike is having a hard time with patience. It is hard to spend as much time as he does, isolated, in a small room, 2 hours or more away from home. The woman in the room next door keeps him awake and has made rude comments that, of course, he can hear.
Mike went to take a walk yesterday and some teenagers stared at him when he got on the elevator. Mike has to wear a mask etc., when he leaves his room. You know, it's kind of like anything else, if I'm in a bar and someone treats me rudely or makes an inappropriate comment, I may get upset but I do take into consideration the fact that I am in a bar. Now, if I were at work and that happened I might not take it so lightly. Know what I mean? Mike doesn't appreciate rude stares and nasty comments while in a hospital. It is a hospital! I know he is sensitive to all these new things he has to do because of CF - oxygen, masks, ports and tubes in his chest and stomach - who wouldn't be. But truly I want to believe others look and wonder out of concern. It is just hard to deal with as we all know. We pray for Mike's patience.
He also didn't sleep well Friday night. He woke up with a stomach ache and had to stop the night feedings. This was Mike's facebook entry from yesterday:
Mike Vandeurzen: hates the weekends in the hospital they go by so slow
And his blog post from the day before he was admitted:
Mike Vandeurzen: u have nocked me down many times i have goten back up i no u come agen to nock me out but i will tuck my chin in put up my hands n fight i am a cf fighter n this round is mine
Many of you have asked about visitors. Yes, Mike can have visitors. Please, please, please be careful and use the antibacterial hand lotion outside his room and gown up to protect Mike. The cold and flu season is upon us and that stuff is all flying around the hospital. We need to keep it out of Mike's room. Go to this post for more info. Mike is bored right now and would appreciate the company. He said he feels badly when people visit because he figures they must be bored too. Let's help him stop feeling that way. I explained that when his dad and I come we love having the opportunity to spend time with him. We don't need to be entertained. We don't feel bored at all. I am always disappointed when I don't get to go.
To keep our CF freinds in the loop Mike's routine right now includes:
Up at around 5-6 for vitals. (He goes back to bed)
IV Tobra and Zosyn one is every 6 hours (4 x daily) and the other is 2 x daily.
Do the math on that one. Each IV runs about an hour with another 15-20 min flush. He is hooked up a good percentage of the day.
He does chest PT or IPV/Vest 4 times per day. Those each take about 15 - 30 minutes.
Aerosol treatments before like Pulmozyme, albuterol, HTS, saline, etc.
Insulin checks and other CF meds like enzymes etc. Throughout the day.
And then by 9-10 p.m. it is time to get him hooked up to the feeding tube that runs 8-10 hours and oxygen that runs all night.
This is a weekend-type day. During the week tests and procedures can interrupt and add to the schedule.
The best time of day for Mike is generally afternoons. He gets unhooked between 1 and 2 and usually has another Med around 4ish and then is unhooked until 7-8 p.m.
That's about all for now on Mike. Facebook him or drop him a card or a call if you get a chance. He so appreciates the support and pray for his continued patience through all this. It is hard to be so tied down. It is hard to be sick. It is hard. Peace. Peace. Peace. Love you.
Richard had his first soccer tournament yesterday and yep, I'm a soccer mom! What next an SUV? Just kidding. It was fun. The team took 1st place in their Division!! Go Panthers! Richard scored a goal in the first game that I missed. I was able to catch the last two games. As I walked up and saw all these moms in blankets, hats, and mittens I knew I was out of the car pool loop. Man, the things you gotta learn on the streets. Thankfully, by the time I got there people were shedding their mittens and hats. I will know next time. The kids played awesome. Better yet, I
was so impressed with their sportsmanship. (In the picture above Alissa snuck one past the goally and into the net!) Not one bad incident. The parents behaved very well too. ;) Lots of energy on the sidelines. I sat next to Regina so I would know what was going on. Thanks for the constant screaming, I mean updates :)!
This is the first year Richard has played soccer. He seems to really be enjoying it. He scored two goals at the game Wednesday night. I was so happy I had the day off and got to see him. The kids are all really working hard as a team. (Love the pic below - the boy can jump!) Parents click on any picture if you want to see it larger.
Proud soccer mom :)
P.S. We were so thankful to hear at church this morning that Ginger received her new lung. Blessings to you and your family for a continued speedy and full recovery. Peace.
Please consider being an organ donor. Blessings to you!
Thursday, September 23, 2010
He had his PFTs today. FEV1 is at 28%. Good news is they haven't gone down any further than the last time. The bad news is his FEV1 is at 28%. Urgh. Hopefully, this course of IV antibiotics will help him get back up to 50% or highter. We always hope and pray for higher. His oxygen sats were at 91% when he got there so they gave him oxygen. He continues to need oxygen at night as well as the feeding tube. His weight wasn't too bad so hopefully, he can maintain and go up from here. That may help. He is tired and resting a lot. He is, as always, in isolation. You can connect with him on facebook or his cell phone. You can write to him here:
Mike Van Deurzen
C/O University Hospital and Clinics D6/518
600 Highland Avenue
Madison, WI 53792
He's not sure how long he will stay this time. He is going to take it one week at a time. He will decide if he will stay or come home on IVs after the first week.
CF SUCKS! So glad God is bigger than CF and still in control.
P.S. Other good news - his port was accessed successfully. No "drano" needed. That was a blessing.
Tuesday, September 21, 2010
"So Mike, what should I tell people so they understand how you feel?" I said.
"Like crap?" he said softly, kind of half jokingly, propping himself up on the counter in the kitchen.
"Coughing a lot, and tight chested?" I offered for clarification. He nodded.
"Tired and hard to do stuff?" he nodded again.
"Not able to eat much because you are afraid it won't stay down?" he continued to nod.
"Just feeling yucky and sick, basically?"
He nodded and then with a smirk on his face he said, "And thankful that there are rest stops on the stairs." (landings) He smiled and kind of laughed shallowly not wanting to start coughing. He ALWAYS looks on the bright side. I love that boy.
So Mike is exhausted and the infection is out of control. Time for a tune-up. He will be admitted tomorrow. I will post his numbers in the next few days along with the address of the hospital if you would like to send him a card :). We appreciate your prayers and support.
I started to write a blog post the other day and didn't get back to it. I was remembering back to when we first found out Mike had CF. I was thinking about all this because it came to my mind how different my emotions have been on this CF journey. You would think that I have spent most of my life sad or in tears, but in actuality it is just the opposite. I have never had any trouble laughing. In fact, when I ran in to a co-worker the other day, a woman I had worked with for almost 10 years and haven't seen for a while now, we started to reminisce and instantly started laughing really hard. She said to me, "Gina, that is what I miss most about working with you, your laugh!" What a nice compliment. I love to laugh. I love life. I can have such a good time without much effort. But tears - now that's another story. Those have never come easily. How odd. I thought about this and I remembered my first tear about CF.
Mike had been admitted to the local hospital. He was three and a half months old. He was so sick. He was literally starving to death in my arms. The nurse did a sweat test. The results were inconclusive but questionable. I asked the head nurse if she could find me some information about the sweat test and CF. She brought back a medical book and I started to read. The book said that if Mike had CF he probably wouldn't live to be 18 years old. It said that the majority of children died well before then. The more I read, the more I knew this is what was wrong with my son. I wasn't instantly sad, as I was just so relieved that perhaps they could do something and he wouldn't die in my arms. He was so close. He had been through so much, but that is an entire blog post in itself for another time. I called my mom and she said she would come and watch Mike for a few hours so I could run home and pack. The doctors told me I needed to take him to a CF center which was 2 hours away. The doctor said they would be able to tell me if he had CF. They said to pack and plan to stay for at least 11 days.
As I was waiting for my mom to arrive, I played and comforted Mikey hoping he would fall asleep and stay asleep until I returned. I fed him and then sang him the song I sang to all my kids from the time I knew they were inside me until they were adults.
I am Jesus Little Lamb;
Every glad at heart I am,
For my shepherd gently guides me,
Knows my needs and well provides me,
Loves me every day the same,
Even calls me by my name.
Day by day at home away,
Jesus is my staff and stay.
When I hunger Jesus feeds me,
In to pleasant pastures leads me;
When I thrist, he bids me go
Where the quiet waters flow.
Who so happy as I am,
Even now the Shepherd's lamb?
And when my short life is ended . . .
I chocked, my voice got stuck and nothing more would come out. I didn't even have a diagnosis yet, but I knew, as a mother knows. I knew that Mikey had CF. A tear rolled down my cheek and I wiped it away. Maybe, just maybe, the CF center would be able to save him. I had hope.
Life became a whirlwind and our lives were changed dramatically. Breathing treatments, chest poundings and lots of medicine, doctor visits, and trips to the hospital. And he was alive. And I was thankful. And I am still thankful. There were no more tears. Not a one for years. Not until I watched the movie, Alex the Life of a Child. I cried so hard after watching that beautiful little girl lose her battle to CF at only nine years old.
Sometimes I feel like 27 years of emotion are trying to bubble up to the surface. Sometimes the tears just come now. Pain is, the difference between what is, and what we want it to be. Spencer Johnson. Such a telling quote. There is pain. I want CF to stop making my son and others suffer. Tears and hope. Hope for a cure. Hope for the future and tears. It is hard to talk about CF now without tears. But I still have hope. And I still love life. And I still love to laugh really hard. Mostly, because I can. I am so blessed. But there is pain in watching your child suffer, even if he never complains. There is still more hope than pain and I am thankful. Thankful that the medications are still able to help Mike feel "better." Thankful that I have friends like you who encourage me and help me and Mike on this journey. Thankful that God continues to guide us on this journey.
I have small journals where I have recorded things I am thankful for. I have a book I carry in my purse or briefcase of “happy” pictures. Pictures of people and things that make me smile. Sometimes I have to LOOK for the blessings among the pain and suffering. It is always right there ready to be grasped, just within reach, there for the taking –if only I choose to reach out and grasp it. I am renewed and refueled. My spirit is strengthened and I am full. Thankful. Hopeful. Grateful. Peace.
P.S. And how does the hymn end?
And when my short life is ended,
By his angel hosts attended,
He will fold me to his breast,
There within his arms to rest.
I am comforted.
Blessings to you!
Friday, September 3, 2010
Anyway, this particular conversation happened when Katie was between 3 and 4. Mike would have been 2-3. I had just finished giving him therapy (pounding on his chest for about 35-40 minutes) – you all remember the days of manual chest poundings several times a day. Mike was getting sick and we were in what I termed “crunch mode.” Crunch mode meant Mike was coughing more and more and I was pounding 3-4 times a day and sometimes in the middle of the night if he couldn’t stop coughing. We didn’t have pulmozyme in those days. We were finished pounding and Mike ran off to play. I was sitting on the floor. Katie walked over and said, “Mommy, Mikey is sick.” And I said, “Yes, honey, Mikey is sick,” very nonchalantly pretending it was no big deal. Katie put her arm around my shoulder and said, in a very low, informational tone , “No, mama, Mikey is SICK!” I looked up at her and I said, “Yes, honey, Mikey is sick,” in a very compassionate voice. Our eyes met and there was an unsaid understanding between us that he wasn’t just “normal” sick but SICK. She knew. She understood. But the conversation that followed was truly amazing and again I can only praise and thank God for giving me the words and leading the conversation to where it went.
“Mommy, if you can’t make Mikey better, than we will take him to the doctor and the doctor will make him all better?” she said, with a hopeful tone. She had endured many hours at doctor’s offices being patient while Mike endured tests and procedures. “Yes, if Mikey gets sick and Mom can’t make him better then we will take him to the doctor,” I said as reassuringly as possible. “And mama,” she continued in a somewhat matter of fact yet inquisitive voice, “if the doctor can’t make Mike better than we will take him to the hospital and the hospital will make him all better?” Katie had also watched mom disappear for weeks at a time as I took Mike to the hospital and she would come to visit. I was amazed at how well she understood the routine. I was almost saddened and sickened that this “routine” was obviously seeming “normal” to her. Was I really talking to a 3-4 year old? “Yes, honey,” I continued to reassure her, “when the doctor can’t make Mikey all better we will take him to the hospital and they will make him all better." And then came the question I was unprepared to hear from a child so young, “But mama, if the hospital can’t make Mikey all better, who will make Mikey all better?” Her voice was very serious as those big blue eyes pierced my soul waiting to hear the comfort that all was well. In a very cheerful yet decisive voice I said slowly, “Well, when mama, and the doctor, and the hospital, can’t make Mikey better, then Jesus will take Mikey and make him all better!” A big smile came across her face and she almost jumped off the floor with excitement. She said in a jovial voice, “Ohhhhh, Jesus will make him all better! OK, mom!” Almost as if she were thinking, oh, of course, how did I forget? She ran off to play.
She was comforted that God was in control. She never asked anymore questions. It was understood. She is 28 and now she comforts me with similar words. I can’t tell you how reassured this makes me. When God gives you the “right” words there isn’t a need for a lot of words. I believe she never brought it up much after that because she has a strong faith and she saw the same in Mike and me – she understood. I’m sure the understanding of those words has changed as her faith has grown and matured but there was never a need for further explanation. The words would have been the same. The words are the same. 1 Corinthians 2:13 “This is what we speak, not in words taught us by human wisdom but in words taught by the Spirit, expressing spiritual truths in spiritual words.”
I believe anyone could use similar words for any age of child. My son Richie is 10 and he is just beginning to ask questions about why Mike is in the hospital so much. Because Mike is an adult and takes himself to many of the doctor and hospital visits, my younger two haven’t felt the impact like Katie did. I haven’t had this conversation with Richie or David yet but getting close with Richard. I anticipate the conversation to be similar. God willing, He will give me the right words.
Skk, I hope this helps you. One way or another Jesus will make it all better. I don’t know what the future holds but I know who holds the future. God is working this all out according to His plan. We are not sure if that means a transplant, or a cure here on earth or in heaven but we are confident in His plan. Peace. I am thankful for the continued strengthening God supplies me through His Word. He supplies us daily. Blessings to you!
Sunday, August 29, 2010
First, as I promised, I will keep Mike at the top of my blog to update everyone. Mike went into the hospital this past time (July right after his birthday) with an FEV1 of 28%. Heartbreaking. He was disappointed that his function got so low. He was trying to get in before they got so low, hoping that he would be able to stay more on top of things in hopes of coming up higher at the end of his course of IV antibiotics. Unfortunately, his cough started getting so bad he couldn't keep much food down. He dropped a lot of the weight he had been working so hard at gaining. He said he could not handle another two weeks in the hospital in isolation. He did one week inpatient and came home and did another week at home. He is a fighter. I was overwhelmed by my new job and didn't help him at all. I know Missy is a big help and I so appreciate others that pitch in. Thank you all. Thankfully, when Mike returned to have his port flushed and do PFTs his FEV1 had come up to 50%. While living daily on only 50% of the lung function we are all used to, Mike is always so thankful to be out of transplant range. There is a big difference between that 28 and the 50%. That is for another blog post. We continue to appreciate all your prayers of support and words of encouragement. Mike is dancing again. He has been doing protein shakes and using his feed tube and has gained back some weight. He looks good. He has a couple of great opportunities with dancing coming up and I'm hoping to find some balance so I can see him dance. God willing. And if you ever get the chance to see Mike and Missy dance, take it. It is awesome. They dance as one and it takes my breath away. I am going to try and video tape it soon. Frank and Julie you have done an awesome job! Missy and Mike - keep up the hard work!
My new job is great and hard and overwhelming and fun and . . . The learning curve is difficult. Partially because I am a bit of a perfectionist and I want to know it all now and be as productive as possible. The other part is because it is a new position so there isn't someone there to "train" me. I am trying to find out where I can best help and support my boss. I'm learning as much as possible and applying my experience. I have to say I have a wonderful boss who is very supportive and complimentary. We seem to really connect and work well as a team. I am also blessed to work with some incredibly talented people. It truly amazes me. Most companies I've worked for have at least a couple people who can kind of be annoying because they don't care, or they just lack skills or drive. I still haven't met anyone like that where I work. I am in awe of the talent I get to work with on a daily basis. I'm learning a ton from all these people. What a blessing for me.
In July this beautiful couple got married. Congratulations to Gary and Chelsea. It was just a beautiful day, a beautiful ceremony and a memorable day of family and fun. Gary and Mike were in the same class in grade school. During the video when I saw pictures of Mike and Gary together as kids I got choked up. I looked over at my sister and could see by the look on her face the emotion that only another mother could sense. So happy for your child and his accomplishments - all tangled up with the emotion of closing a chapter in your life while another one opens. Gary will always be special as I got to see him grow up more closely than I have gotten to with other nieces and nephews. I remember the computer lab I monitored while Gary and his friends practiced typing. Seems like yesterday. May God bless your life together Gary and Chelsea!
The end of July a friend of mine came to visit from Dallas. We haven't seen each other in years. It was difficult to try and plan time together given all the things that can come up that can't be controlled in my life right now. But Jean and I decided to just go for it. We set a date and she got airline tickets. It was funny because sure enough, as soon as the flights were booked I was offered my job. Mike was in the hospital when she came but we planned for this too and Jean flew into Madison. I picked her up at the airport and we headed right to the hospital to see Mike. I had been at work all morning and then at the airport. Jean had just been stuck on an airplane for a few hours so we needed to gown up to be sure Mike was safe from germs. I didn't want to take any chances. But we still had fun and grabbed a quick picture. Of course there wasn't a nurse around but we got a goofy picture. Thanks, Jean and Mike for putting up with my photo fetish. Jean and I left the hospital and walked up and down State Street. Jean bought me dinner and then we ran to the grocery store and she bought some excellent wine and beer and we came home. We just hung out and had such a wonderful time. It has taught me that I need to take time to refuel. I am so thankful to have friends like Jean who help me slow down and smell the roses (or the incredible red wine ;)). On Saturday I allowed myself to be pampered. (Thank you to Angie and her family for the gift certificates - they were finally put to good use!) We had massages and I got a pedicure and Jean got a manicure. We laughed and caught up and reminisced. It was awesome. On Sunday she helped me figure out my benefits for my new job. That was so kind of her to help because I was overwhelmed with it all at the time. The advice she gave to Paul and I is so appreciated. Thank you so much for all you did Jean. Love, love, love you girl! I can't wait until you come again!
The beginning of August was hectic with Mom working full time. David needed his fourth eye surgery and I was torn. Again, God provided. My friend Gail came over and spent the night and she and Paul left with David at 5 O'clock in the morning and headed to the hospital in Sheboygan. I went into work. This was such a difficult decision. David came out of surgery kicking and screaming like he did the last three times. Gail's help was immense. She and Paul worked together to keep David from rubbing his eyes and settled him down. After being drugged and taking a long nap they were able to bring him home around lunch time. Gail is a saint for giving her love to my child in this way. God has blessed me with such awesome friends. David was bright eyed and untraumatized by the experience by the time I got home from work. While I wish I could say his eyes are perfect now they are still better than they were. We are praying he won't need any additional surgeries and that too is a blessing. Thank you for all the help Gail! Love, love, love you!
August means the beginning of school for us. This also meant another transition. Paul went back to work and the boys are all off in school now. Here are some pics of the yearly tradition in our house.
Richie is a big "upper grader" now. He started 5th grade with Mrs. Albrecht.
Gage is 7 now and in 1st Grade with Mrs. Lauber. I also got a picture of Gage, with his Mom (my daughter Katie) on the first day.
And yes, my baby started Kindergarten. His teacher is Mrs. Wilsman. God bless her!
The blessings we have been given are immeasurable. God has seen us through so much and continues to provide for us on a daily basis. We are thankful. These past few months have been particularly hard for me as I have started my new job and so much has gone on. So many people have been there for me. A couple of friends of mine, Leslie and Pam, brought over dinner one night. I was almost to the breaking point as Mike was getting ready to be admitted to the hospital and things were so hectic at work. What a blessing to come home and find a kitchen full of food and goodies. Thank you ladies! You are the best!
Blessings to you!
Sunday, July 4, 2010
Saturday, June 26, 2010
I have been saddened these past few days at the news that Conner Jones, after 7 years of battling CF, passed away on my birthday, just two days ago. It seems that kids should not have to think about death. Their little hearts and minds should not be burdened with sickness and disease. The pain of children dying would be unbearable if we did not have faith. It is because we know that heaven awaits us that we look forward to eternity with loved ones. Conner’s mom, Sarah, taught him about Jesus. What a wonderful mother and father Conner has. My prayers go out to this family. Breathe easy little Conner, laugh and play at Jesus’ feet. Peace, peace, peace to Conner’s family.
To all of you in the trenches fund raising and helping to find a cure for this disease, we thank you. We are blessed by you. We will continue to fight so someday no one else will lose a child to CF . . . so no one will have to have this conversation with their child about dying with CF . . . We need a cure. Thank you for your support… no other words.