Diabetes Blog Week: Day 5, “Freaky Friday,” aka the Post In Which We Swap Auto-Immune Diseases

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“Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?”

Since I am familiar with it, I think we’ll go with Celiac Disease. As I’ve said earlier in the week, John was diagnosed with diabetes in February of 2005. In August of 2007, his older brother, Luke, was diagnosed with Celiac Disease.
Celiac definitely puts a cramp in socializing. Everything revolves around food and it seems that gluten makes the world go round.
Taking our own food and being careful on those rare occasions we eat out as a family makes it more doable, though still complicated. I don’t like potlucks. Really I don’t. I have a fear of the unknown and I want Luke to feel well and be healthy.
With that said, I’d still take Celiac any day over Diabetes.
With celiac, as long as Luke has safe food, he’s good to go.
Obviously, with diabetes, just having insulin does not mean John is good to go. The testing, 8-10 times a day, the site changes, the night times (which his daddy, aka Super Daddy, does 90% of the time), monitoring exercise and illness.
No comparison as far as immediate health or long-term health.
From what I understand (and I am not a medical professional), a compliant person with celiac should have no ill health effects. Maybe ever.
From what I understand (and again, I am not a medical professional), a compliant person with diabetes can do everything “right” and still have issues. Anytime.
But really, what it there to understand about diabetes. It is a frustrating disease that can change on a minute’s notice. I feel like we”re in a bad Star Trek episode and being “beamed” somedays. Just when I get the blood sugars where I want them: “beam”–allergies, sickness, vacation lows, vacation highs, etc.

We have had more people express sympathy over celiac, it seems, just in the “Poor Luke, he can’t eat this gross, plastic-tasting birthday cake from XYZ discount store.”
Honestly, (and I have said this nicely) I would give the whole family (all eight!) Celiac if I could take away John’s diabetes. Yes, I would. In a heart beat.

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The Six Sibs going round without gluten!
On the front row, Luke is on the left and John is in the middle.

I will answer the second part of the prompt a bit differently than it was meant, since this week is really my first real “participation” in the DOC. I had never heard that term until the last few months. It was just after the 7 year diagnosis mark that we received an e-mail newsletter from Medtronic, which contained a review from Meri. I had been reading blogs for several years, but it didn’t occur to me that there would be diabetes-specific blogs.

Anyway, I would say that just having a child with a chronic illness has made me aware of others with chronic illness or disability. We’ve had people say things like “I don’t think I could do what you do,” But I respond with “You do what you have to do.” I look at children with autism, in wheelchairs, needing liquid nutrition, etc. and sometimes think the first sentiment, then realize that their parents probably echo my thoughts. They have been called to different trials and I appreciate them for their loving care and perseverance.

Romans 12:12 (NIV 1984)
“Be joyful in hope, patient in affliction, faithful in prayer.”

Five Minute Friday: Song

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Five Minute Friday

Five Minute Friday: Song

My life has a soundtrack. Younger boys playing, deep voices of older boys, daughter organizing, siblings laughing. It’s all a song.
There is one in particular, John, who seems to live for vocal music.
He has a very sweet voice and uses it liberally. Most of the day, he provides a song via whistling, humming or singing. Hymns, Lord of the Rings songs, or nonsensical notes over and over and over. The latter, I have to ask for a pause. Sometimes the whistling too. I try to be patient. I enjoy it much of the time and I do miss the song when they are all out or I am out and I am alone in the quiet. It is our family song. I like the song of my life.
End

Psalm 96: 1-6 (ESV)
Worship in the Splendor of Holiness

“1Oh sing to the Lord a new song;
sing to the Lord, all the earth!
2 Sing to the Lord, bless his name;
tell of his salvation from day to day.
3 Declare his glory among the nations,
his marvelous works among all the peoples!
4 For great is the Lord, and greatly to be praised;
he is to be feared above all gods.
5 For all the gods of the peoples are worthless idols,
but the Lord made the heavens.
6 Splendor and majesty are before him;
strength and beauty are in his sanctuary.”

Go here for the entire chapter.

Diabetes Blog Week: Day 4, Accomplishments Big and Small

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“We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.”

In the 8 years and almost three months since John’s diagnosis, I would say I have accomplished a few things:
1) Taking a “one for all and all for one” approach with our new normal. We had always eaten the same thing, so I couldn’t imagine singling John out and making him eat differently. Not gonna happen in this house. (This approach was tested in 8/07 when John’s #2 brother was diagnosed with Celiac Disease.)
The real world will be upon him before I know it and I want to give him a good grounding with lots of healthy food (and a few treats thrown in) in our family setting, with his favorite five friends and his favorite parents not only cheering for him, but being on the same team.
2) Embracing carb counting, in a big way, early on. My preferred method is weighing, second would be measuring, and only as a last resort will I guess. I know people that do, and I can, but it is not perfectly accurate, and since diabetes throws so many curve balls, for no apparent reason, I feel that I should be doing everything I can to keep The J healthy. I think I have bordered on being obsessive about it, so am trying to still be very precise and accurate, while a little less uptight 😉
3) Caring for John while he was a baby, then preschooler, while being pregnant, then having his two younger brothers (5/05 and 7/08).
To be honest though, I am sure that is the reason for some of the downs I experienced with the older three children and homeschooling. As I said in Monday’s post, no one can do it all.
4) Learning from #1 and through much prayer, learned to juggle a little better and began resurrecting/rescuing my relationship with the older ones, who had been expected to “keep on and carry on” while I was so busy with the younger guys + diabetes. It took years, but we are in a good place now. Well, most days. 😉
5) Starting per John’s request at about age four, to turn small areas of his care over to him. He wanted to start with testing and when he started on a pump at age 5 (11/05), he took to that like the jr. engineer that he is! He now can do everything for his site changes, except the actual placement. We are currently working on carb counting.
His nurse practitioner told us when he was tiny that he would get interested in taking care of himself, but I was really surprised when he did at only, age four. Of course, he was a veteran by then.

Whew, this has been an interesting week. Lots of brain, memory and emotion dumping.

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From yesterday’s post, playing at home, just before diagnosis.

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From Tuesday’s post, John testing prototypes of The Testeroni 5000.

Romans 8:28 (NKJV)
“And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”

Diabetes Blog Week: Day 3, Memories

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I wrote the following as a comment to this post back in February.

“I really appreciate your thoughts, Emily. I think a lot about a diabetes diagnosis (February) this time of year. My son’s to be specific, 8 years ago next Friday. He was 18 months old and I was 6 months pregnant with baby #5.
His diagnosis was not as traumatic as yours sounds, his blood sugar was “only” 350 when he was tested at the pediatrician’s office after I noticed his increasing thirst and diaper wetting.
He spent two nights in the hospital and began taking four insulin injections per day.
I truly did not appreciate a nurses’s prophetic words that it would not be so bad because he wouldn’t remember life before diabetes. She was right, but I remember it and mourn for those simpler days.
I am a blessed mama and though I would drop diabetes in a heartbeat if I could, I have never felt angry at God, as I do know that he has a plan for my kind-hearted, beautiful-blue-eyed boy. He has diabetes, he is not a diabetic. We don’t let us define us, though it has definitely refined us.
Thank you again for sharing.”

I thought I would add to that, and I probably will someday, to tell the full story, but I can’t think about diabetes any more today, except of course in real life. 🙂

I am editing this post on Thursday…
Yesterday, I had included Emily’s reply, but kept thinking about it and didn’t have a peace about posting it. It wasn’t a private reply, but I didn’t have permission to post it here. It is on the post I linked to at the beginning. I know that was a long and rambly explanation. That pretty much sums up what’s going on inside my brain 😉

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Playing at The Discovery Center on February 15, 2005, a week before diagnosis.

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Playing at home, also before diagnosis.
He wore these slippers during his two-day hospital stay, along with the baby blue hospital gown that came to his ankles. (I couldn’t even imagine taking any pictures then–those hospital images are burned into my brain. Maybe John would have liked to see them though.)

Psalm 46:1-3 (ESV)
God Is Our Fortress

“God is our refuge and strength,
a very present help in trouble.
Therefore we will not fear though the earth gives way,
though the mountains be moved into the heart of the sea,
though its waters roar and foam,
though the mountains tremble at its swelling.”

Diabetes Blog Week: Day 2, John’s Dream Diabetes Device

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The prompt I am using today is one of the wild card options, as the choice for today was to create a diabetes petition. I thought the wild card prompt sounded much more interesting, especially since I have enlisted John to help. I thought that would be the most fitting and fair, since he is the one being poked and prodded. Plus, he is an amazing jr. engineer, following in his daddy’s footsteps. 🙂

“Back by popular demand, let’s revisit this prompt from last year! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?”

Take it away John:

The Testeroni 5000

The Testeroni 5000 is a glove that has a tester on one of the fingers. You can’t even feel the test when it tests you!
You have a little tiny thing that beeps whenever you are low and whenever you are high. It gives you insulin when you are high and it tells you to eat something whenever you are low. You never have to take it off. It isn’t hot whenever you wear it, it is very comfortable.

Dictated by John, age 9, diagnosed 2/05 at 18 months.

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John testing prototypes of The Testeroni 5000

Psalm 121:8 (ESV)
The Lord will keep
your going out and your coming in
from this time forth and forevermore.

Diabetes Blog Week: Day 1, Seeing Our Real Life

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I like to write and have been enjoying having a blog. While spending way too much time contemplating blog names, I tried different combinations including sugar and gluten, diabetes and celiac. I just couldn’t envision only writing about auto-immune diseases, though they are a huge drain on my brain. That said, I am going to spend this week writing about diabetes. Hopefully my posts will be a bit more organized than last time.

The prompt for today is:

“Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?”

I think our doctor and nurse practitioner have a pretty good sense of what our daily life is like, as far as diabetes is concerned. We try to eat well, we count carbs, John has an acceptable A1C.
We are blessed to be able to homeschool, so we don’t have the school issues to deal with. That is one stressor off my shoulders. (Well, to keep it real, homeschooling in and of itself is a stressor in many ways, but I’ll save that for a different post.)

The second question is harder. Or more embarrassing.

While I have been able to do what needs to be done and focus in on carb counting, mostly whole food meals and the like, it has come at an expense.
I don’t know anyone who can do it “all,” I certainly can’t. So, since I have the diabetes thing to do, there are many times my brain and therefore body is just too wiped to keep the house in the condition that I would like for it to be. It has taken me a long time to figure that out. At least that’s my excuse. I have spent a lot of time feeling badly about myself because my house doesn’t look like a magazine or what I imagine my friends’ houses look like.

This is what I hope they don’t see:

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Our living room and my writing nook, with children waiting for me to read aloud, laundry to be put away and lots of books, magazines and assorted paperwork for me so sort.

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One more, for good measure.

Of course it doesn’t look like this when I invite people over. I can kick it into high gear when I have to. I also have children who love to socialize, so they are pretty willing to help out when we are having people over. It’s the daily routines that I struggle with. I’m attempting to figure out solutions, I do know I need structure.

Life isn’t all about diabetes (or celiac), though it feels that way sometimes.

Colossians 3:23-24 (ESV)
Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ.

Twas the Night Before Mother’s Day

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No, I’m not really going to write this poetry style, it’s too late for that. I did begin this post 30 minutes before Mother’s Day though and Kyle is the only one stirring in the house. 🙂

For Mother’s Day, (that artificial, fake, made up day that can make you feel good and sad, even at the same time) I am going to attempt to give my children the gift of an somewhat organized mother. Not a Mary Poppins-type over night, because again, she was fake and she wasn’t a mother.
But, better.
Because they deserve it. Because it would glorify God. Because it would bless my husband. Because it would be a good witness to my poor neighbors who showed up, one at the front door and one at the back this week. I decided I needed a good dose of humility and invited them in. Yikes! Those poor shell-shocked people. They deserve better.
Rambling, I am, but that’s o.k.

So, in honor or Mother’s Day, which officially begins in 22 minutes, here is my top list of priorities (not exactly, but mostly, in order) for the rest of May:
1) Pray without ceasing.
2) Continue with my Bible Gateway reading plan and enjoy it, not just read to check it off the app.
3) Finish the last week of the Good Morning Girls Bible Study of Luke.
4) Participate in the Christ in the Chaos book club on Preschoolers and Peace. (Yes, I know, such an appropriate title for this post.)Trust me, it’s a good one so far.
5) Preschool and LOTS of play time with Paul.
6) Reading time with Isaac. Only 15 days until his birthday- I know he can be reading better by then. Help him with a woodworking project. Use the cool red paint from last year’s birthday.
7) Writing with John and chatting and origami. Maybe Legos too.
8) More talks with Rachel about growing up. Crafty times and
9) Listening to Luke. Getting to know that boy better. Enjoying him.
10) Talking with Adam. Figuring out a plan for the rest of this year and next.
11) Making my relationship with Kyle a priority and really mean it.
12) Be a good neighbor–invite someone over for dinner.
13) Be a good church friend– ditto.
14) Help the children budget their mission money and write letters to our World Vision children.
15) Write a note–thank you, encouragement, birthday, etc. every day.
16) Pick a paint color and paint my room.
17) Remove wallpaper and paint upstairs bathroom.
18) Donate or pitch two books every day.
19) Donate or pitch two articles of clothing each day.
20) Clear out and scrub the laundry room.
21) Write something every day.
22) Blog at least three times a week.
23) Exercise daily.
24) Spend 15 minutes each day organizing the school room.
25) Simple, organized meal plan. That would bless my man!
26) Love, love, love my family.
27) Finish my dad’s birthday project from last year. As in June. His 70th. Lame daughter.
28) Think of a super-de-duper birthday project for my mom’s birthday. This June. Very soon.
29) Get up earlier in the morning. My goal is 6 a.m. daily. Not telling what it has been lately.
30) Go to bed by 10 each night. So, it might be 12:15 a.m. while I am editing this.

I’ll try to add links to a few of the above on Monday. For my droves of readers 😉

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My wonderful mother, being a wonderful grandmother…aka making play dough with Paul.

1 Thessalonians 5:16-18 (ESV)
16 Rejoice always; 17 pray without ceasing, 18 give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

Five Minute Friday: Comfort

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When sleep escaped me at 2 a.m, I read the prompt for FMF, thinking I could write when I woke up for real. I drew a blank. When my phone quacked at 5 a.m., still blank. While listening to my children read the Bible tonight, waiting for my turn, it came to me.

Comfort

Today, I had the privilege to spend the day with a friend from church. My friend is several decades older than I, and is experiencing much confusion and short-term memory issues.
We, my daughter and I, were there to try to provide some stability and comfort for her, but she instead was the one to give me comfort.
She shared many wise words, despite repeatedly asking my name, what we were doing for the day, when her family would back, etc.
Over and over she exclaimed how sweet Jesus was and how good God is. She asked if I was grateful for my family and if I told them. She asked if I got on my knees and thanked God for them. She prayed for our breakfast and lunch, she told stories of her church friends from the past and she told us she was grateful that we were there.
She reminded me in such an impactful way how important faith is. Just trusting in Jesus. That is comfort.
End

Proverbs 16:31 (ESV)
“Gray hair is a crown of glory;
it is gained in a righteous life.”

Five Minute Friday

Five Minute Friday: Brave

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Linking up for another Five Minute Friday post.

Five Minute Friday: Brave

Brave isn’t an adjective that I would immediately choose to describe myself. In many situations, instead of doing the brave thing, saying brave words, I have chosen to escape, to flee the situation.

Homeschooling is so difficult at times, stretching me out of my selfish desires for quiet, peace, “me” time, yet is is one of the most brave things I have done.

Thinking this morning about brave, it came to me that probably the main reason we homeschool is to instill in our children all the reasons they can be brave:
Love God.
Follow Jesus.
Never be afraid to do what is right.
Love Others.
Serve God and others.

This is just a few from the top of my head, but the list could go on. and on. My six are learning to believe what is right and true. The world does not and will not agree and they need to be prepared for that.

Stop.

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My brave loves last month at Maramec Springs.

2 Timothy 2:15 (ESV)
Do your best to present yourself to God as one approved, a worker who has no need to be ashamed, rightly handling the word of truth.

Five Minute Friday

(in)RL

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On Saturday morning, I dropped my big boys off at our local homeschool conference, then drove 30 minutes west to a stranger’s house in a smaller town.
There, I met two more strangers (who were long-time friends), who had driven 30 minutes east.

The purpose of the meeting: To get acquainted with each other and view and discuss a webcast that was part of a women’s conference, (in)RL. The conference was hosted by the bloggers of (in)courage, a division of Day Spring.

The brave friend (no longer a stranger), who hosted this meet-up signed up to do so months ago. I, on the other hand, registered three days before the event. I had checked the registration page every time it was mentioned in the blog, but just couldn’t seem to commit.
The problem: sheer fear. I finally clicked the register button because I knew it was now or never (or least next year). And how discouraging would it be to offer to host, only to have your offer rejected.

The morning flew by as we shared our stories. We are all mothers, have all been through trials of different types and all love Jesus. We all agreed that we would like to do this again.
New friends. A new community. Centered around Jesus.

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New friends.
Photo credit: Our hostess’ kind daughter.

The key quote from the conference was:
“When I heard women speak and share stories that were so authentic and pouring from their hearts, immediately I felt my own defenses just melt away.”
– Michele-Lyn, @LifeSurrendered

A quick review of the webcast:
I watched the Friday night part on my own and we watched part of the Saturday session together. Some of it was good, some helpful, some not-so-much, all-in-all, a bit dis-jointed. It just didn’t seem to flow well. The new friends and fellowship were definitely the highlight. You know, I think that was the point.

The key scripture was:

Philippians 2:1-4 NIV

“If you have any encouragement from being united with Christ, if any comfort from his love, if any common sharing in the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and of one mind. Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking to your own interests but each of you to the interests of the others.”