Hitting a Rough Patch

May 27, 2018 By Ashley Bergris in Caregiver Health and Wellness, Healthcare, Our Family's Journey Tags: childhood illness, chronic illness, daycare, life event, medical care, SAHM, Stay at Home Mom, work life balance 3 Comments

I was keeping up with everything. The laundry was washed, blog posts were getting written, and the house was clean. Looking at my blog, you might think I vanished into thin air. Those who followed me regularly were left scratching their heads, “what happened in June 2017?” I never forgot about the blog, or all of my readers. In fact, I missed you dearly. It’s time to share what brought me to a place I couldn’t post for a year.

Our son was doing well. All of his medical appointments were three to six month follow ups and keeping up with the house just wasn’t a challenge any longer. We found a daycare about ten minutes away willing to take a child with a feeding tube for four hours three times a week. They reassured us they were comfortable running his tube feeds, they had done it before for other children, and that they were able to give him the attention he needed. We had a plan and it was as solid as such a plan could be. With that, I took a part time job close to home. The arrangement was I would be in the office while my son was in daycare and work from home for the rest. I couldn’t have asked for a more flexible work arrangement.

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Unpredictable Digestive Hiccups

December 18, 2015 By Ashley Bergris in Noonan Syndrome-Like Disorder, Our Family's Journey Tags: childhood illness, enteric neuroscience, motility, noonans syndrome, SHOC2, stress Leave a comment

It’s always so unpredictable what’s going to set our son’s digestive system off. You would think since he eats the same thing every day for most of his calories that he would be relatively consistent. You would be wrong, unfortunately. No matter how consistent we keep the external factors he has his own ways of surprising us.

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Acceptance and Your Child’s Illness

August 28, 2015 By Ashley Bergris in Caregiver Health and Wellness Tags: Acceptance, anger, bargaining, caregiver, childhood illness, denial, depression, grief, Special Needs, stages of grief Leave a comment

There are five stages of grief in the Kübler-Ross model. I’ve sourced the stages from Wikipedia.org and shortened them where appropriate.

Denial — The first reactions is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
Anger — When the individual recognizes that denial cannot continue, it becomes frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”; “Why would this happen?”.
Bargaining — The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. Other times, they will use anything valuable against another human agency to extend or prolong the life. People facing less serious trauma can bargain or seek compromise.
Depression — “I’m so sad, why bother with anything?” […] During the fourth stage, the individual becomes saddened by the mathematical probability of death. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”; “Nothing is impossible.” In this last stage, individuals embrace mortality or inevitable future […] this state […] typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.

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