DISCLAIMER

This blog is where I record a limited depiction of my feelings, family, and faith. My blog was recently under intense scrutiny, and so I feel this disclaimer is necessary. I try to tell my story as openly as I can, but this blog represents a cropped and narrow-viewed version of my story -- like all social media -- it is NOT the full story. Many events happen behind the scenes that are not recorded or written about, due to the sensitive nature of others involved. Life has many layers. Many layers can be shared and many cannot, and this blog is simply a layer of my life that I allow others to view, but it is not an accurate depiction of all the layers of my life.

Handling the Hard Stuff

There is always something. Life was not meant to be easy-peasy. Just when you think you have conquered one trial, another will surely follow -- so you can continue learning and growing, right? It has been one of those "learning and growing" times around here, that is for sure!

Everything I had planned last week had to be changed. I actually had a lot of things planned -- even very important things. But not one of my planned events took place. Everything was put on hold to take care of poor Henry. I missed out on my daily running, which left me feeling really gross. I even missed my weekly temple trip, and I felt the difference in my spirit. Everything was thrown-off, but Henry needed his mommy, and so everything else got kicked to the curb. And, somehow, the world kept spinning, despite my unexpected change of plans.

Henry has had a rough go of it. After our trip to the Emergency Room, and then another trip back to the Urgent Care, I was told he had a urinary infection. I knew that something was not right. His extremely high fever and the way he was acting was different than any illness my other 3 children have ever had.

After the test results came back, it was determined that he had experienced his first issues with his unique internal plumbing (4 compartments in his kidneys, and 4 ureters). It sounds like maybe his reflux produced his first infection -- that is to be verified after I go and visit with his urologist. I admit I am growing weary of the hospital. I have seen enough of it to last me a lifetime.

The day after the excitement in the ER -- having him hooked-up to machines and throughly tested -- his fever was still really high, so I took him to the Urgent Care. Henry was put on antibiotics, which seems to have helped the infection. However, the antibiotic has also caused him to have constant and unpleasant diapers, which has resulted in a nasty rash. He has not been himself for the last week, he has been very irritable, and waking often in the night crying and uncomfortable. His infection is healing, but his rash has been a pain in his butt -- literally.

I have been loading his bum up with A&D ointment, and it is working OK -- but I think he could use something stronger... any recommendations?

He has made it all this way (over 2 years) without any problems with infection. This was the first one. Perhaps it is the first of many, I don't know. I will discuss those things with his doctor. The infection does make the need for surgery much more likely.

Fun stuff.

I still recall the moment when I was driving home from the hospital, after discovering the news that Henry had kidney issues. He was not born yet. I was pregnant and emotional when I heard a voice tell me, "It will be hard, but it will be OK." Back then I had no idea how hard it was really going to be. I never dreamed that the "hard" would include handling Henry's kidney issues -- and life -- without Charles to help me. I thought surely Charles and I would walk through the "hard" and make it "OK" together.

Nope. It's all up to me.

Good thing I have broad shoulders, or else life might be really hard.

Sometimes it makes me sad that Charles is gone, and will not physically be around to help me through the hard things. He will be missing out on kidney infections, surgeries, braces, the teenage years, boys turning into men, dating, college, missions... and, well, he will miss everything. The good and the not-so-good. He will not be here for any of it. This breaks my heart, it really, really, does.

I know he is watching us always... but it is not the same as having him here with me, holding my hand as we face the world together. I often wonder how I will make it through the next 10 years, or the next 50 years... but all I know how to do is take life one day at a time. I can do one day at a time.

It is strange because now Charles has become a memory. He is a picture, a video clip, a journal entry, a memory from times gone by. He is no longer in my physical present, or presence. He was my past, and he is my future. This reality is sometimes hard to wrap my brain around. He was once my whole life, and now he is a dream extending in both directions from this point. It was a beautiful past with him, and is a bright future ahead -- but the now leaves me wanting to go back or forward. The now is the hard part.

I was told it would be hard. I was also promised that it will be OK.

One day at a time... that's how I handle the hard stuff.

Tomorrow is another day.

I can handle tomorrow.

And maybe the next day too. ;)



P.S. This was a "Courage to Cry" kind of post... these days come and go like the wind. But they are just as important to record as the "Courage to be Cheerful" posts. We cannot know joy without knowing sorrow. I know both, often daily!

Comments

  1. So sorry about your little boy. As for the diaper issue, when my little one was on antibiotics we used probiotics (powder form) that I added to her juice/water which seemed to help. Also, we tried both desitin and butt paste. I don't really know if the ointment matters much, but after I cleaned her bottom, I took a dry piece of cloth and wiped all over to dry the area before putting anything else on. My friend taught me this trick and it has helped so much. She also uses baby powder then the ointment, but I never needed to do that. I know for her, her babies come home with the worst diaper rash. Hope he feels better soon. I don't know you at all, but I read your blog regularly. Your family is always in my prayers.....

    Megan

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  2. Sometimes antibiotics cause thrush. Adults generally get it in their mouths. Little ones often get in their diaper area. Thrush likes warm and wet. Not sure what the latest cure is for it. Might want to ask your doc.

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  3. So sorry! :( you might need niacin for yeast from his dr. Also I know this sounds weird, but after using a diaper rash cream put some antacid like malox liquid onto of that rash and it clears it up. Best wishes!

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  4. Man check out all this great advice for bum rashes. This is great.
    I'm sad that Henry isn't doing well Mari. I don't know if I'm in tune with the spirit enough to know how to help you, please text me with whatever you want. I'll do whatever you want to help with the load on your broad shoulders and ease it a little. There's so many people who can help with the 'other' stuff. I know there's things that only you can do like be there for Henry, I assume he only wants you, but the other stuff, let us help with, we can lift with you so you can feel a little better.
    Sorry you didn't get to work out, that's tough as well. It's hard to not feel like crap if you haven't worked out. Most of it's in our minds though and the damage to our bodies is little relatively.
    Your perspective on Charles is very interesting and something I hadn't though of, thanks for sharing.
    I hope Henry gets better sooner rather than later. Sorry about all the hospital visits.

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  5. Ditto to what Melissa said. In the September VT message there is a part that stuck out to me. It said, " We cannot always lift the burden of one who is troubled, but we can lift her so she can bear it well.” There are so many there to help lift you as you carry whatever burden is placed upon you. Don't hesitate to ask us. :) When my kids had really bad, yeasty rashes they were prescribed niacin, like the person listed above. That always worked well for them, but I think it has to be a yeast rash to really work. I also thought your perspective of Charles was interesting. I think it really explains how many who knew and loved Charles feel. I think that describes how Tyson and I feel to, although I wouldn't have thought to describe it that way but it's exactly right. He is has become a memory. Man, sometimes that makes me so sad. I am glad though, that you have your memories of the past and a forever future together. Love you Mari!

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  6. go buy some Bag Balm at freddy's....it's a super thick vaseline type stuff that blocks the acid from the stool and helps his bum to heal really well. i LOVED that stuff, it's awesome. also, wring out the wipes you use to clean him....the soap on them stings if he's got raw skin.

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  7. I used Clotrimazole & triamcinolone on my kids when diaper rash stuff didn't work- it's a completely different thing than diaper rash- my kids had food allergy reactions and it would give them diarhea and a rash that looked like sunburn. I believe the triamcinolone is suggested to be used more sparingly on the bum- but I never had to use it more than 1-2 days. Cleared right up!
    Your thoughts about Charles were very poignant. PLEASE let us help you ! Xoxo

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  8. There are many great ideas here for the rash. I would add only this recommendation: air time. After cleaning Henry up but before applying one of the wonderful ointments, let his bottom have air time...for as long as you dare.
    A hug for you on your hard day/s. Darn it!

    How about a cute saying. When my daughter was about 3 years old she was drinking some chocolate milk with a spoon. Then, she accidentally knocked over the cup. She called out, "Poon, you okay!?" :)

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  9. Mari thanks for sharing. The comments made by the others are all good. My pediatrician always told me "clean and dry". So the air time is a good recommendation. Your thoughts about Charles are so true and like the others I hadn't thought of some of those things. Please let us help when ever we can. All of us can help lift you when you have some heavy feelings. We love you Mari !

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  10. So sorry, Mari. Hang in there. And for the diaper rash - I have used and LOVED Desitin on all 4 of my babies. It's like a miracle cure. They'll be screaming from a painful wipe one moment, then I put a little slather of Desitin on there, and Bam. All better. I know, it sounds crazy. I promise I'm don't work for Desitin. It just works so well for us. Get better, Henry!

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  11. Hi Mari. I have been reading and enjoying your blog for some time now. I followed a link from another blog and found you here. I have very much enjoyed your inspirational posts! On the subject of diaper rash:/ I have found that washing the bum with soap and water at every change is the first step to successfully beating it! I then put a layer of athletes foot cream, often the rash is a bit yeasty! Then put on a big glob of original desitin, not the creamy stuff, the thick gloppy kind! Good luck!!

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  12. Mari - I worked for several years at Primary Childrens, on the Infant Unit and PICU. We found that "Triple Paste" is the best there is. It is pricey but works miracles. They took it off the floor for a while and gave us Desitin because it was cheaper. The nurses were up in arms. As you can imagine, the bottom rashes in the hospital are horrid. I rejoiced when I was able to start buying it at the store instead of the pharmacy! I have found it most consistently at Walgreens, once in a while at Walmart. It is bum gold, I tell ya! Also, as others stated, rinse your wipes with water. You only want soap and water on his bottom until its healed up. I found your blog after Sarah d'Hulst told me about you. She sure does love you and thinks of you often. Thank you for sharing your testimony! It has helped me keep my chin up during some very trying times! Sorry I have to sign anonymous, but I can't remember any of my passwords! Steph B. (Spokane)

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