Tag Archives: Acceptance

Live Happier. Here’s HOW.

June 2, 2016 By in Caregiver Health and Wellness, Uncategorized Tags: , , , , , 3 Comments
Live Happier. Here’s HOW.

I don’t reblog often but this post touched me. I hope it lifts you up as much as it lifted me.

thehappylife101

I want to share with you 4 key points that I have learned in order to live a happier life. Believe me when I say that I am still trying my very best to adapt these everyday, and sometimes I fail, but what’s important is I don’t stop trying =)

1. ACCEPTANCE

“I’m okay with what I ultimately can’t do, because there is so much that I can do.”-Sam Berns

It’s our automatic response to make excuses when we are afraid to fail at something that we really want to achieve in life. We can come up with all the reasons that hinders us from doing what needs to be done. But we need to be bigger than our limitations! We should focus on the things that we can control and change.

2. GRATITUDE

“We have a choice. Either to be angry for what we don’t have, or be thankful for what we do have.”-…

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The Hour that Changed Everything

October 17, 2015 By in Noonan Syndrome-Like Disorder, Our Family's Journey Tags: , , , , , , Leave a comment
The Hour that Changed Everything

We found a doctor researching our son’s gene mutation and were able to get in and see her. It took the whole day between preparing to travel, traveling, and the appointment itself and was well worth the effort. We needed to talk to someone with a good understanding of our son’s genetic condition in order to move forward with the best treatment possible.

It turns out we’ve been taking excellent care of our son. Even without knowing his underlying disorder, we’ve still effectively treated all of its symptoms which can be treated. I’m sure this sounds underwhelming considering the title. Our son’s treatment plan was an important reason, but not the only reason to have this appointment. It was also important to help my husband and other family members progress through their grief and understand our son’s needs.

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Acceptance and Your Child’s Illness

August 28, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , , , 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.

  1. Denial — The first reactions is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
  2. 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?”.
  3. 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.
  4. 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.
  5. 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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The Difficulties of Being a Parent to a Child with Hypotonia

August 26, 2015 By in hypotonia, Noonan Syndrome-Like Disorder Tags: , , , , , , , , , , Leave a comment

At six months our son was just starting to lift his head. At sixteen months his arms were still too week to support crawling, despite being in occupational therapy (OT) for over a year and physical therapy (PT) for three months. We did tummy time. We tried every trick in the book recommended to us. With the help of OT and PT he’s not falling further behind, but he’s certainly not catching up either.

He struggles with what’s called Hypotonia, or low muscle tone. He’s much more flexible than you would expect a child to be. He can put his feet up by his ears without even straining and he’s well over a year old. This flexibility causes him to need additional strength to keep his muscles in place, and he can’t make progress on physical milestones by himself because he lacks the strength to lift the weight of his body and head without significant assistance. Thankfully, with help he does get stronger. However, if you left him to his own devices he doesn’t work on his physical milestones like you would expect. In fact, he doesn’t work on them at all.

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The Difficulties of Breastfeeding, a Special Needs Perspective

August 5, 2015 By in Controversial Topics Tags: , , , , , , , , , , , 4 Comments

In honor of breastfeeding support week, I would like to share this with all of you. I wrote it a good while ago and decided to shelf it indefinitely. I think I’ve come to a place where I’m finally comfortable sharing. Enjoy!

Let me start by saying, a lot of people in the previous two generations do not understand breastfeeding. They bought in to the sales pitch that formula is better for your child. They believe bottles are better than the breast. The first time your child seems to struggle (even if only a little) being breastfed, the overwhelming response is that shoving a bottle of formula in their mouth will make everything better.

In order to balance this out, others have gone to the extreme to claim breastfeeding is best in all cases. There is never a situation where formula needs to be given, and if you give your child formula you’re denying them the chance to bond with you fully. The truth is in between, as is usually the case. There are situations where children need to be fed formulas. I didn’t know this when we started on our journey with our son, but there are formulas designed to help children with medical needs such as difficulty digesting and unknown allergies.

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Dealing with, What if?

August 3, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , , , , , Leave a comment

This is a fairly typical problem, but takes on a whole different form when applied to the health difficulties of a loved one. When it’s your child, it can be completely overwhelming to think about all the different possible scenarios that could happen. Every procedure has risks. Every time your child goes into the doctor’s office they could get sick (and for many special needs kids, that’s no minor thing).

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The Importance of Personal Best

July 13, 2015 By in Caregiver Health and Wellness Tags: , , , , , , , , , , , 5 Comments

Special needs children are like runners. Runners are one of the best groups I know as far as understanding what, “personal best,” really means. I can’t count how many times I’ve watched someone come yelling and cheering with excitement for losing a race. You look at them like they’ve gone mad, until they explained they cut a whole minute off their time. Well then, that’s a big deal! Once they explain you all celebrate together, because you don’t have to be the best to be awesome. You just have to keep getting better. So, what’s my point?

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Managing Your Stress, Part Three: New Normal

July 9, 2015 By in Caregiver Tips & Tricks Tags: , , , , , , , , Leave a comment

Getting settled into a new routine after a emergency or crisis is one of the hardest things I’ve had to handle as a mother of a special needs child. One of the tricky things about not having a diagnosis is that you never know if you’re looking at a new illness (virus, infection, etc.) or a new feature of the undiagnosed syndrome. It’s happened several times that the new problem has turned out to be another clue to the underlying syndrome and we’ve had to adjust what we’re doing to accommodate. So, that’s all well and good, but how do you do that?

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5 Ways I Cope with Being Home Most of the Time

June 29, 2015 By in Caregiver Health and Wellness Tags: , , , , , Leave a comment
5 Ways I Cope with Being Home Most of the Time

I’m not a loner. I like being around other people. I LOVE being around other people that are interested in what I have to say. I’m that person at work that volunteers to present. I enjoy networking and it’s not something I consider a chore. So, when I started home I wanted to go right back to the workplace. God had other things in mind for me, because I couldn’t go back. My son’s medical needs prevented me from leaving him with your run of the mill child care center.

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Learning to be a Stay at Home Mom, Part One: Acceptance

June 21, 2015 By in Our Family's Journey Tags: , , , , , , , Leave a comment

I didn’t plan to stay home with my son. I thought I would give birth, spend a couple weeks snuggling him, and then place him in a daycare close to my work where I could visit him during the day if I chose to do so. My husband and I had always evenly split the chores. With both of us working, we figured we could hire someone to come in and help once a week. It was a great plan for us and we were ready to execute it over a month before our son was even born.

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