Wednesday, September 18, 2013

It Is Not Death To Die

It is such an honor and responsibility to be trusted with raising our children in discipleship. I am so thankful for the opportunities God has given us to share with Jennifer the truth of the gospel. She has been very open in taking initiative in asking really difficult questions about sin and other things.

Tonight at bedtime I read a Clifford the Big Red Dog book about how he began as the runt, and that the daddy in the story “didn't think that Clifford would live through the winter” which started us talking about our former dog, Goldie, and that she died last year. This was the first time I told her that Goldie had died, and not just “she's gone”. I said that Goldie had gotten very old and her legs and hips were hurting a lot, even though she seemed very happy, death was God's way of making her not hurt anymore.

Jennifer's grandpa jimmy also died last year after a long battle with brain cancer. Jennifer remembers her grandpa being sick, and we were at his house when he died. At the time of his death, I took Jennifer into the front yard and told her that Grandpa Jimmy had gone to be with Jesus. She has remembered this and has mentioned it before when seeing pictures of him or talking about him.

Our conversation tonight turned from talking about dogs dying, to her asking "will i die?"and then a tender conversation during our family pray time about the reality of death and that we dont know when it will happen. i asked her "who knows when we will die?" and she responded “God does.” We talked about how we be with God once we do die, and that we'd see Grandpa Jimmy as well, and about how gloriously beautiful heaven is described in the Bible. I asked her “who loves you more than papa and I do?” and she said “God does” and I reminded her that if he loves her that much, she can know she will be safe here or in heaven. She continued to ask questions like “will you cry when I die?” and “will you and I die at the same place?” And Mike and I continued to remind her that we do not know when it will happen to anybody, but that God will keep us here as long as he wants us to be, and that as we follow God's directions for us, we stay right with the one who knows all our days. She asked us “is Heaven up in the sky?”and we reminded her about the story in her Jesus Bible Storybook when Jesus rose up into Heaven and His disciples were staring into the sky waiting for him, that the angel reminded them to continue about what Jesus had for them to do on earth then, and not just stare up waiting for him. That God has jobs even for her to do in life, like learning the right things to do, and helping other people, and being joyful.

I never would have imagined I'd be having these conversations with my three year old. She seems to grasp these difficult things so very well, and I feel that God is guiding our conversations, so that we have answers that are not confusing to her. I constantly pray that I will continue to trust God in leading us to disciple our little ones.

After tucking her in, I went to the piano and sang this song:
It Is Not Death To Die

VERSE 1 It is not death to die
To leave this weary road
And join the saints who dwell on high
Who’ve found their home with God
It is not death to close
The eyes long dimmed by tears
And wake in joy before Your throne
Delivered from our fears

O Jesus, conquering the grave
Your precious blood has power to save
Those who trust in You
Will in Your mercy find
That it is not death to die

It is not death to fling
Aside this earthly dust
And rise with strong and noble wing
To live among the just
It is not death to hear
The key unlock the door
That sets us free from mortal years
To praise You evermore

© 2008 Integrity’s Praise! Music/Sovereign Grace Praise (BMI)

link to the sheet music and chords for the song, if you need it:

I also found this related blog article, I recommend reading it, too:

Wednesday, September 11, 2013

a regular entry, instead of part of the series....

I miss a home of our own... miss being able to let my kid have her getting-home-and-its-past-naptime tantrums without worrying that it will possibly needlessly offend my grandmother,  who has taken to thinking *every* time jennifer has a meltdown, it is somehow directly related to how jennifer feels about said grandmother.....which everyone else knows just simply has nothing to do with anything more than jennifer being a three year old...

i don't see this working well with a newborn being added in just will not be good for my grandmother of for me, because i know that she will be worried and/or offended anytime one of my children isn't acting completely happy....

so i am praying now for the right place to be revealed to us so that we can move into some kind of renting situation sometime in november, possibly....

Saturday, September 07, 2013

part three: from sickness into health (looks like there will be at least four)

(click here for part one)
(click here for part two)

I found some prayer journal entries i made surrounding the first surgery

October 4,2012
Tomorrow is Mike's consult with the surgeon. His GI doctor truly has tried to think of every other viable option prior to this.
Help me to continue to trust not only you, and your leading on this, but also the wisdom of the doctors you've provided for us. Knowing that Mike's case has been discussed at hospital meetings and used as a teaching discussion kind of helps solidify to me that Dr. Gully is taking this very seriously, not just dealing with the patient at the moment they are in the building, but carrying his concern to others to try to solve this mystery.
At the same time, I don't want to sound harsh, or under appreciative of some friends' concern and advice at mentioning special diets and health advice. It is difficult to receive when I never did fully trust Mike's assigned dietician's advice and understanding...
Please give me wisdom and knowledge to best feed my husband and trust you to bring your healing in the best way possible, that you receive the honor and glory for it all.

October 23, 2012
As of Friday (last week) we have Michael's surgery scheduled! I think I am so relived to see an end to the medicine treatments that don't work but that wear on my husband with side effects... This feels like a breath of fresh air. I realise it will not be all roses getting from where we are to the new Michael. Its a 3 surgery process across the span of about 6 months. He still will not function the same as the rest of us, but if all of this goes as planned, he wont need to use a bag for the rest of his life, and the outcome, though not as convenient as someone who's never had UC, will be easier than his life now. I am confident that this is right. I do not have a guarantee that all the details will go perfectly, but I feel so at ease about letting them operate on my dear Michael...
You,God, are trustworthy and faithful. You continue to provide for us through support financially and in prayer. You've not only given us a church family to take care of us...but TWO locally, plus one in Mississippi and one in Texas, all who have been tremendous to us in their care. I'm trusting you with the doctor and nurses you've put us with-you have made them and placed them. Help us to shine in our faith, that they see you in our reactions. Give me wisdom and grace to accept help and to know what help I need, as friends seek to assist us in service to you.
Psalm 100:3 “Know that the LORD, He is God! It is He who made us and we are his; We are his people and the sheep of his pasture.”

October 25, 2012
I keep being drawn to the Psalms. This morning I am at Psalm 102, which feels like it may be the cry of my husband when it talks about the pain and disheartened stress.
Help us not to have a false sense of hope going into this surgery....I mean prepare him for the continued difficulties he will face even though the worst will be gone. Help me to be patient with him and compassionate when he gets frustrated with the correct foods to eat. Give us both extra grace to face these difficulties together and help each other through them.
I hope and desire that by the time he is able to consistently face life out of the house again, that someone will have a job available to him, preferring someone with the knowledge and compassion to see us through the next two surgeries and recovery period. It would be amazing both financially and for him emotionally, to have that available. Please open now the way in which we should go with that.
Thank you for continuing to provide more than just enough with our very little. I feel like the widow with the oil jar, or the boy with the lunch of what we are able to earn, we should not be able to make ends meet, but you have been stretching our dollars for the past three years, never giving us what society would call “plenty” but never leaving us in need of anything. We have been clothed,fed with difficult diet needs, kept cars running and bills paid. You moved us twice and covered all our medical needs,and even provided that we were able to go to Haiti. Math would not add these up and match our income.

December 18, 2012
Today Michael begins work again! His last paycheck was written in September 2011. You have not failed to provide for us. This month took our savings account down to $50. Not enough left in it to cover our next month's bills. I asked of you, Lord, to provide for us financially,and you immediately began to give through your people. 1St $12 then $50 and now a source of income.
So I do not forget in the future, Mike is going back to work at Fast Signs. He will be 3 days a week. It has been 3 years since he's worked there. 2 years since he asked them about rehiring him (when we moved back), and 1 ½ years since we found ourselves members at the same church as Melanie and Miles. Only you could have planned these circumstances-to place us in fellowship with them, that they know our situation, know he will have to work and then take off again-and have OFFERED him this at the moment we found ourselves most in need. You are so faithful. You are great and praised. I remember asking you months ago,that you would provide a job offer JUST like this at this very moment.
You are teaching me the importance of asking for specifics of you. Acknowledging my need and your power to provide it.
Help me continue to not only trust you to carry us, but to provide for our wants and needs as we express them humbly to you.

Wednesday, September 04, 2013

part two of our journey from sickness into health:

When sickness feels like all we know...

(please read part one first)

Once diagnosed, his GI doctor prescribed medication for the inflammation, and his dietician provided supplements to add to his meals for extra calories. By Spring 2012 he had begun to drop weight. He had always been thin- lanky, some would say. But in the process of only a few weeks he dropped about 25-30 lbs. At his worst I think he came in at near 135 at 6ft tall, and Having about 20 bowel movements a day had become average for him, and there is just little one can do to catch up with that kind of loss. He actually had developed sores on his rear from sitting on the toilet so much with almost no body fat to cushion it.

Emotionally, in many ways I began to feel like a single mother. I was the primary caregiver and only worked part-time myself- Michael at this time was still doing his part-time music director job, but he couldnt work full-time. He was unable to commit to spending time with jennifer during her toddler days because he often had to run to the restroom and might have a mess to clean up afterward, and if that didnt happen, he just didnt have the energy to enjoy her. She couldnt sit in his lap, because his insides were so inflamed that they were painful and tender, so his lap became off limits most of the time He couldnt sit on the floor. If I went to the store, she went with me or stayed with my parents. When it came to our intimacy, that was hard to come by, too. I wouldnt know when or how to simply hug him without hurting him...I usually had to rely on his initiation for...anything. I did my best to prepare healthy meals for the three of us, but never knew if he would be able to stay at the table, or even feel like eating anything. In April Michael had to step down from his music position because he just couldnt know he could be in place each week. We were going to church in separate cars. He had begun having to leave during church services, or was sometimes unable to show up at all. It was difficult to delicately explain his reasons, because usually it meant he had either been up most of the night running to the bathroom and maybe moping the hallway, or that he had had an accident on the way to church...or in the middle of church. I was raising our child, holding our only job (and part-time), keeping up with our groceries and our bills, leading the hymns at our church, and all the while keeping a loving and gracious face toward my husband as I tried my best to be his helper though sometimes i just watched him fade, not understanding how much longer we would have to deal with not seeing healing...or how much longer his body could last at the rate it was going.

He was on pills, infusions, and steroids for inflammation, for diarrhea prevention, for blood loss...I cannot remember the number of times Michael's medications were changed...every month or couple of weeks...either from a bad reaction to one, or simply not seeing any result from another. Side-effects ranged from sleeplessness, immune suppression, thrush, constipation, fatigue, cancer-risk, there was even one he was on which was known to cause birth defects in children, if we had conceived during his taking it, or within 6 months after ending it.(that one, I was thankful to move past-i was so thankful that it didnt work. I remember crying prayers in the shower during that because I wanted so much to have another baby, and for jennifer to have a close sibling, as I had grown up blessed with, and if this drug worked or didnt, it was taking months off of our being able to try to conceive. I remember releasing it to the Lord and realizing that at that very moment he could be forming a baby for us to have later by adoption if he wouldnt have us birth another of our own blood. So right there in the shower I prayed for that possible baby and for the struggles the mother may be facing which might draw her to need adoption down the road.) After trying every medication and sticking with the low-fiber diet for a ridiculous amount of time, He. Never. Saw. Remission. Surgery clearly became our only option. His body wasn't gaining weight back. To me, his body had begun to look like images of people in impoverished countries, or in the Holocaust. He wasn't that far gone...yet, but his ribs and collar bones were more than sightly visible, and his rear had become concave at each hip. His thighs matched my calves, I think. In my mind, surgery would seem like a miracle....bringing him back from a road to an early death which I couldnt bear to think about...and his dad passed away that June....I had watched Linda watch her husband fade out of health and into the arms of God, and she and I gave each other looks that seemed to say how much we understood one another's pain in loving and caring for someone that you cannot possible actually help...we had that in common, though I did not want to follow her entire road just yet....

We met with Dr Lane, the GI surgeon, in September of last year to evaluate Michael's candidacy for surgery and what the outcome could look like. We came loaded with questions, and Dr. Lane seemed to answer each of them before we had to ask them. We knew that he was not only familiar with the subject matter, but also very conservative and cautious in his approach to it. He suggested because of how much strength Michael had lost, that the surgery be completed in three parts. (This is sometimes done in only two) He did not want to rush the decision process or the healing process of the surgeries. In all, Michael would first lose his entire colon and receive an ostomy his first surgery, have a “jpouch” created during a second surgery, and then have his ostomy reversed on the third surgery. While we were certainly apprehensive about surgeries and about the months michael would spend with a bag on his belly and what that would be like, I felt like this man was offering me our lives back, giving us the “in health” portion of our marriage vows which we have so longed to experience.
He put Michael on some extra protein to prepare his body to be better able to heal after surgery, and then told him to try his best to put on some weight. We scheduled his first of a three-part surgery for November 2012.

Next entry: the surgeries and recovery periods, etc

(proceed to part three)

Tuesday, September 03, 2013

long.time.coming- our journey through sickness and into health: part one

I've been in the process of transferring much of the blog entries i wrote during my pregnancy and first years with jennifer into a handwritten journal. Its something i started two years ago and have not been very good at completing it. I finally am to the point of transferring the section after her birth. I honestly feel as though by being so far behind in it, i am missing things i would love to share with regarding her 2nd and 3rd years, but it has been very therapeutic for me to have just now rewritten the sections from labor and her birth. i needed to dive deep into those thoughts again now as i am just beginning to feel movements of our second little one and want to learn from and remember jennifers birth now so clearly so i can be better prepared for this little one.

This brought me to realize i haven't made any entries in a year and a half. this time-span may well be called the most difficult year and a half we've seen, thus my lack of updates.  Even the months before that when i did post, it was almost entirely chronicling the life of our daughter, and ignoring the difficult-to-talk-bout health issues of my beloved. Though we have grown so much...we have certainly hurt much....i haven't wanted to write about it...because i haven't wanted to face it in print, or maybe even admit the midst of it. now that i've been rereading and rewriting the experiences just prior to it, i am reminded of the huge benefit of having my experiences written down, and of the great opportunity I have been avoiding to give God more praise for His faithfulness and stability in our journey....and i hope that i have not waited too long to engage my memory in recording what i've been through.....bear with me as I attempt to recount these skipped-over parts of our family.

The year after Michael and I were married, we both discovered running. I got into it with some friends of mine, and he followed me into and turned out to be a lot better at committing to it. He would get up and run in the mornings before going to work, and sometimes would ride his bike to work instead of driving. About a year into becoming so active, Michael began to have more and more really irritating symptoms and we didnt know what they might be symptoms of. He began to have difficulty completing a run without needing to find a place to use the restroom. We'd heard that sometimes runners have issues with that, so at first it was just embarrassing, but sometimes he didn't make it to a restroom in time... About January 2009, 6 months before we moved to fort worth, through some trial and error, and reading about symptoms, we self-diagnosed Michael with Celiac disease, and because all his symptoms fit (frequent diarrhea, skin dryness and red itchy patches, vitamin and iron deficiency, mood swings, etc...) AND it is an illness which is only treated by a diet change, we changed his diet to test our theory. we removed gluten from his -and mostly from my- diet, we waited. because of the way celiac works, we knew it could take 1 to 2 years to see remission, so immediate results were not expected, nor seen. However, he did seem to be experiencing fewer symptoms, so we thought we were on the correct path.

....Then came our move to Texas. With that, the stress of job hunting, financial worry, expecting our first child, school, discovering Michael's dad had brain cancer... Everything you ever read says that stress aggravates digestive issues, so it did not much surprise me that as school became more challenging, so did keeping up with Michael's nutrition (and laundry...) He was working, or in classes most of the time and coming home to change clothes whenever he'd have an episode. (that's what i'll call it, its nicer that way..see why i avoided writing about this previously?)

This lead us to need to move back from Texas much sooner than we had planned, and as  we know now, stayed in this same situation for much longer than we had imagined... refer to  This entry for more context on our move...and if you add in the part about Michael's failing health, it makes a bit more sense. i hate that i wasn't willing to face and admit this gaping need in our lives for support. it was so very difficult to talk about, so only those closest to us knew the whole story. i just wish i had written it out more honestly....for me...and for anyone who may now be able to benefit from our past struggles.

So....after we'd moved to North Augusta, into my grandmother's house, I quickly called to begin the process of getting Jennifer on SC medicaid...and turns out our entire family got it, which was something I just wasn't looking for. This  began Michael and myself getting routine Dr exams...which neither of us had afforded in...decades. Michael began to talk with his physician about his assumed celiac, and at the same time we decided to go to Haiti with a mission team from our church...thus needed lots of shots and antibiotics for the trip. the many doctor trips for mission trip shots kind of overshadowed his need for further testing, plus his primary care Doc moved so he was shifted around a bit from doctor to doctor in the practice. also, add to that, once he began complaining of symptoms worsening after the mission trip, he kept being treated as though he had picked something up in Haiti, rather than as though he has been struggling with diarrhea, anemia, and lack of bowel control for months and years prior. We knew this wasn't a parasite or reaction to something out of the country. Finally, ended up being assigned the same Doctor i've been seeing the whole time, whom I had been very pleased with, and she heard his whole story and immediately understood his issues needed looking into. from April 2011 to November 2011 as he was shuffled from doctor to doctor, he also ended up losing his job due to being late or having to clock out early...completely due to his digestive issues. In November 2011 he finally was given testing to see if something else were wrong with his digestive system. we were immediately told that he had inflammatory bowel disease which meant he had ulcerative colitis or Crohns, While we didnt know till january 2012 which he had, and both take somewhat opposite diet changes to live with and treat, it was knowing something, and knowing that we had help getting to the root of it. knowing that there ARE treatments available...etc. having a tested diagnosis and medical team working with us was such a relief. Anytime someone is vying for you, on your team, and helping to find a solution, it helps carry the weight.

Due to holiday schedules, it was January before we got the diagnosis...and found out he had ulcerative colitis. it meant that almost everything he ate caused his colon to become and stay inflamed. it is an auto-immune disease, so his system was attacking his colon. Theoretically, if you can find out your triggers, once the colon calms down, you may just have a few foods to avoid to keep from getting sick. I had wondered why being gluten free had helped him feel a little better....turns out...the best help to UC during a flair up, is going to a low fiber diet. prior to going gluten free, we had been eating whole grain everything, so in switching to gluten free foods, we had dropped a significant portion or our grain fiber, and were mainly getting fruit and veggie fiber. still more than was recommended for someone with a severely inflamed colon, but significantly less than previous...thus the noted improvement.

January 2009 assumed celiac, went gluten free
November 2010 declining health issues and stress, moved back to north augusta, in with grandma.
April 2011 through November 2011 dealt with not getting tested and not getting listened to.
January 2012 found out what was the issue. time to celebrate...right?

well....Spring, summer, and fall 2012 were a doozy....i'll get into that part in a later entry....i promise.

(proceed to part two)