Sometimes Life Gets You Down

I am down tonight, it has been building for weeks but tonight I feel it intensely. It is a combination of many things. 

The first week in November, the 17 year old son of a close friend died in a drowning accident. 

He was a bright, kind, and joyful child.  In his obituary his parents wrote;

“He will be remembered for his unmitigated joyfulness, his natural curiosity, and his wholehearted enthusiasm. He lived fully. In his seventeen years of life, he traveled extensively and visited many places including Belize, the Galapagos Islands, Fiji, New Zealand, and Samoa. He enjoyed exploring and experiencing the world… He loved camping and felt at home sleeping under the stars. He could be found cooking homemade meals for his family, teaching himself to play the piano, or gaming with friends. He did not squander his life. He stepped into it with a big smile and his wonderful curly hair, awake and wholehearted.”

No doubt many have heard, “No parent should ever have to bury their child.” It is true.

Secondly, my son who has been battling IBD and autoimmune pancreatitis for 14 years has been in the hospital for a month. He came home today, but he is not well. 

He was equally a charming child. He had a magical childhood as well. He traveled the world with us. He raised chickens (they were his pets), then he became interested in aquaculture. He formed a website for the reef community at 14, he started a computer cloud company at 20. He had a bright and promising future when IBD reared its ugly head. At 22, his colon perforated while he was in the hospital. He was bleeding internally. After 3 surgeries and 8 weeks in hospital he came home. A year later he nearly bled to death after a scope procedure and biopsy.  Then year after year it seems the problems just piled on. 

Today he is on a lot of medication, he’s in a lot of pain, and it seems the medical community has given up on helping him. It’s incredibly sad when you have to fight a disease and you have to fight the medical community too. 

I have prayed so many prayers for my son. The other day I pleaded with God, I asked, what is the answer? Is there anybody that can help him? So far the answers have not come. 

Added to this, I got a call this morning that my cousin died. I just saw her in September. She was five years older than me in the last 15 or so years we reconnected and became closer.  She was beautiful, she was intelligent, loving and kind.  

She was a RN and with continuing education, got her masters degree. She worked for years at the VA hospital in Albuquerque as a counselor.

Sadly, several years ago, she was diagnosed with Alzheimer’s and declined very quickly. 

When I saw her in September, she was unable to carry on a conversation. When I arrived, she looked up at me and smiled. I said to her, “Hi Debbie, it’s your cousin, Trish”  She looks straight at me and replied, “I know.”  That was the most comprehendible conversation we had that day. 

I asked her to take a picture before I left. I held up the phone and smiled to take a selfie.  She leaned her head over to touch mine and shut her eyes.

I am forever grateful for the visit that day. When I got home in Washington, I reflected on my visit with her. I felt she would grieve if she understood, she would not want to live that way.  I told my husband I never want to live that way.  Just existing with all dignity and autonomy lost. 

Finally, it is winter. It is dark, dreary and cold outside. I feel dark, dreary and cold inside.  

A slowly brewing state of grief, downheartedness, and sorrow in my soul. 

Praying this season in my soul passes quickly. When winter is over I pray I will see and feel the new hope of spring. 

Deborah Ruth – Rest in Peace

Facing Inflammatory Bowel Disease: My Son’s 11-Year Battle

The post below from 11 years ago came up today on my Facebook page. It serves to remind me of a most desperate time in our family’s lives when our youngest son was facing serious health issues caused by Inflammatory Bowel Disease. This was only the first of life threatening events he would face over the next 11 years. Almost one year later to the date he nearly bled to death after a procedure where an arterial vein was accidentally clipped.

My heart begins to beat faster as I read my thoughts from 2013 and I relive the horror of those days. How could someone so young, become so ill, so quickly? It is IBD, and the myriad of other complications and chronic health conditions that sometimes accompany it, and tragically IBD has no cure.

For my son, it is accompanied by auto-immune pancreatitis, which has led to diabetes; the steroids that he has been given over the years to control inflammation have led to bone deterioration; the five different immune suppressing drugs he has worked his way through can all have horrible side effects including cancer. Three of these drugs proved ineffective, one he had an extreme allergic reaction to and we are praying the current one will show some effectiveness.

Eleven years, and sometimes I still think that “from this side it looks like nothing is happening”… He has been hospitalized annually for months at time, with bowel obstructions, bleeding, inflammation, pancreatitis, and sepsis. I have worried, fretted, prayed and pleaded with God. Some days I think he has closed his ears to my prayers.

I think those things, but I don’t believe they are true. I remember examples in the bible of men, men like David, Job and Paul, all men whom God loved and men who honored and loved God; yet they still suffered. Even, after all these years, I still believe God is in control and he has a plan for my son’s life.

May 19 was World IBD Day. It is a day set aside to bring awareness about IBD and to support the 10 million people worldwide that live with this disease. I will continue to pray. I pray for a cure. A cure so no one has to suffer any longer.

World IBD Day

Today is World IDB day. Before 2013, I couldn’t tell you what it was, or how it affected people who have it. Now, unfortunately I have several family members and friends who have been diagnosed with IBD and due to involvement with the Crohn’s and Colitis Foundation, I have met many other people who are battling IBD.

Per the CDC, IBD is: “Inflammatory bowel disease (IBD) is a term for two conditions (Crohn’s disease and ulcerative colitis) that are characterized by chronic inflammation of the gastrointestinal (GI) tract. Prolonged inflammation results in damage to the GI tract.” Sounds simple, right? It is not. It is painful, it is life altering and it can be deadly.

In 2013, my youngest son was diagnosed at age 22. We hit the learning curve very quickly as within a month he was rushed to surgery with a condition known as Toxic Mega Colon. His colon had perforated and it was removed. That was only the beginning of his 9 year battle. After five surgeries, two near exsanguinating bleeds, 3 biologics, 20+ hospitalizations and too many tests to list, he is still battling this debilitating disease and it breaks my heart to see him struggle and suffer.

This year the hashtag for World IBD Day is #ibdhasnoageIDB has no age. It attacks the young and the old but most often diagnosed between 15-35. It has no age and attacks men and women alike worldwide.

They have treatments: Steroids that cause weigh gain and fat deposits on various parts of your body, even a condition that’s called “moon face,” when where the fat lies changes and makes your face appear rounder and wider; biologics which suppress your immune system and leave you susceptible to serious infections, cardiac issues, joint pain, and even certain cancers. Today, I know more, than I wish I did but the most important thing I know is that – THERE IS STILL NO CURE.

If you know someone with IBD, offer your support, don’t judge what they eat, how active they are or say “you don’t look sick.” Believe me when I say they would not wish this on anyone.

Chronic Illness: you don’t get it until you get it.

https://www.crohnscolitisfoundation.org/what-is-ibd

More of his story here: https://emyloomwordswovenwithinmyheart.com/2017/05/19/villains-and-superheros/

Image courtesy of: worldibdday.org

Speak to Me

How long Lord, how long?

No regaining what was lost
Is there not a cure?
Is there not an answer
To ease this pain?

How long Lord, how long?

It is seven years of suffering,
Seven years of fighting,
Seven years of youth gone
Seven years too long.

How long Lord, how long?

When can there be freedom?
Freedom from agony…
Freedom from medication…
Freedom from heartbreak ?

How long Lord, how long?

What was the crime for this?
What is the gain?
How can this be turned for good?
Don’t understand, I can’t see how.

How long Lord, how long?

Have the prayers fallen on deaf ears?
Was it my sin?
Will I ever see the joy
Will happiness and health return?

Lord, I wait.
Lord I cry out to you…
Lord please hear my plea,
Lord my prayers are exhausted.

How long Lord, how long?

Psalm 61:1-2
Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I.

Photo: The Encounter painting by Daniel Cariola, located in Magdala, Israel

Breaking Free

It is a Sunny Fabulous Fantastic Tuesday and we are packing up to go home!!! Breaking free a day early!

~ We love Dr. M ~

Five weeks ~ three surgeries ~ two trips to ICU ~ three stays in Imcu ~ 10 units of blood ~ five units of Plasma ~ hundreds of nurses ~ dozens fo doctors ~ antibiotics, pain killers, steriods ~ MRI – Cat Scans ~ Picc lines ~ TPN ~ AND buckets of ice chips: $????

Answer to thousands of prayers: PRICELESS
.•*¨`*•..Our God is an Awesome GOD .•*¨`*•.

“You, God, are awesome in your sanctuary; the God of Israel gives power and strength to his people. Praise be to God!”Psalm 68:35

An Awesome Father

The Midnight Report, Sunday June 16th, 2013. A pretty good weekend all in all.

Slowly removing IV medications as Josh is eating a little more. Thus far it seems PBJ’s are the food of choice, but hey whatever works. Dr Menan says it takes a while to release old food phobias. Taken several successful walks around the ward. Saturday and Sunday. The incision is looking better, the fever is down as is the WBC.

I was able to get to the office on Saturday and pay the past due taxes and straighten out the payroll situation. Much love to friend who chauffeured me again.

BFF brought homemade peanut butter cookies. Along with PBJ’s, a favorite at the moment.

Chris spent the weekend with Josh; talk about an awesome father. He has been the rock of strength on which we have all been leaning on. During this entire ordeal Chris in addition to spending hours with us here and keeping up with work at SubTerra, he has driven around town feeding Josh’s fish, checking in at his office, picking up mail, even trepidatiously going to the data center to restart or service servers.

On this Father’s Day he came in with coffee and said the cafeteria lady told him his coffee was free if he had a picture of his son. He broke down in tears when he told me he showed her the one of him walking in the hall yesterday. Nothing says I love you from your Father like emptying the urinal and holding you up as you walk.

Latest projections are that “maybe” if all progresses as planned, Josh could be released on Wednesday!! That’s my hope and prayer and from then on he improves by leaps and bounds each day.

Hope all you fathers out there had the opportunity to receive and give some love from your kids today. Hold them close and cherish each moment because as I posted on April 16, this quote from Lee Cowan a CBS reporter, “But they do remind us we don’t get to set life’s clock. While we may think we’ll have a tomorrow to say all the things we want to say, or should have said, what this week proved is that sometimes, that tomorrow doesn’t come — and the things left unsaid could end up one of our greatest regrets. “
Little did I know then the challenge that was to lie ahead in just a few short weeks. Thank you all for all your love, support and prayers. I cherish each and every visit, phone call, card and texts and encouraging word I/we have received. ❤

My Mind’s Wanderings

For the past few days sitting quietly contemplating the events of the past two weeks, I have tried fitting the pieces into place. Where the huge decision that was faced two weeks ago was to commit to the Remicade treatment. How insignificant that decision seems now. Only three days later my son was facing major surgery and a few days after that a second surgery and then third surgery to control bleeding – to the point his life was in the balance.

When the bleeding started again three days later he again was rushed to ICU. There nurse Steve was methodically checking drains, monitoring his heart rate, drawing blood. Inside I was panicking, remembering Friday evening, wondering why they weren’t starting the transfusions because Friday it had taken so long to get the blood it seemed life was ticking away.

I, trying to remain calm, said to Steve, “you know from this side it looks like nothing is happening.”

He reassured me. He said that they had the blood type on hand, that if he needed they could get it within minutes, that they want to check the hematocrit levels, monitoring the rate of output on the drains, access whether the bleeding was slowing — do things carefully and in timely manner. Make sure every decision is based on the least risk to my son’s health. In the end, they did give him more plasma and blood; and with that the bleeding stopped.

So I’m here thinking about all of these things and I hear my words to Steve; “From this side it looks like nothing is happening.”

I think sometimes I do the same thing with God. I pray about situations, the future, what God’s plans are for my life and sometimes from this side it appears nothing’s is happening; but I understand that even though it appears that nothing is happening, God is in control. He knows all the details of our lives. He knows all the pieces that must fit together perfectly. He knows when we need life sustaining blood and when more extreme intervention is needed. He also knows when we just need to wait as he watches our vitals, checks where we are losing strength and then he refills us.

6 June 2013 at 17:59