Monday, August 26, 2013

Life Can Be Unfair At Times


Let's face it.  That statement we all have been guilty of saying at least once in our lives, "Life can be unfair at times" or "That's not fair."   Well truth be told, that's right, life just isn't fair at all!  You have to make count for what you do have.  If you get everything you want, you may not truly recognize what the true value of good times are.  You would not appreciate it, just take it for granted.  I have blue moments, these blue moments are not pitty Jolene moments, they are when I have things coming at me left and right and I just cannot fix everything.  I know, I know we cannot fix everything but my type of personality is I do not want to see people I love or the human race to suffer.  I am a fixer, take care of people personality.  I have had pitty moments.  I am not going to lie, however those moments do not exist since Miranda was born.
This picture is a couple of years old.  Miranda is the youngest
 
Miranda is a definition of how life can be unfair at times.  She was born early and we all knew there was going to be a high chance of something wrong with her due to the fact my sister's pregnancy.  She had single artery umbilical chord (SAU) most babies do not make it if they do they have a very high chance of birth defects.  Miranda's first surgery was at the age of nine months.  She had several by the age of two when they finally diagnosed her, spina bifada, seizures, and cerebral palsy.  None are the typical symptoms, thus why it took so long.  She has had so many different genetic testing but nothing comes back as a perfect match.  Now they think she may have Mitochondrial Disease but cannot test her because the insurance company will not pay for the $14,000 test.  Yes, I did not add too many zeros, you read that correctly.  Miranda will be five in November.  My sister knows someone who had a child with this disease and if treated before the age five, she may be able to live to her twenties.  The treatment is basically a regimen of vitamins. What is Mitochondrial Disease?

It present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.
Source

Everything in bold, she has wrong with her. Her little heart beats way too fast as well sometimes but they have never diagnosed her with cardiac disease.  She cannot eat as you and I.  She receives her nutrition from a G-Tube. Miranda's latest obstacle is pancreatitis.  She has been hospitalized now for close to two weeks.  A few days in the hospital Miranda's doctors decided to start treating her as if she has Mitochondrial Disease without being tested.  I think they feel this is the best treatment for her. They have taken her off one of her seizure medicines because it can lead to pancreatitis as a side effect.  My sister has been told adults who have pancreatitis can be in the hospital anywhere from two days to two months and are in a lot of pain.  Miranda only whimpers.
Photo: Sis Kaylee trying to get Miranda better!
Photo: Getting some love so she can get better!!!! They love her so much!!!! 

Now this is truly unfair.  When my children whine to me it is not fair, I look at them and think seriously?  No, this is an inconvenience for you, unfair no.  Now, I am not saying we do not have unfair moments and some days may blend into a bad week, but Miranda for me keeps things in perspective.  She is my father's inspiration not to complain about his cancer.  Miranda may have a tough life but she is blessed with a very caring mother.  My sister is so dedicated to all of her girls and does what ever is needed for Miranda.  Miranda is blessed with two caring sisters.  They adore her.  Miranda is blessed with a grandmother who will assist my sister and watch Miranda whenever is needed and a grandfather who adores her too.  Miranda is blessed with aunts and cousins who care for her as well.  She is very lucky in the area of being loved.  My sister will not give up when doctors are frustrated and want to give up.

Miranda is my inspiration.  She is the definition of "Life Can Be Unfair At Times" but she is also inspiration of not giving up fighting through the tough times.  She does not give up.  She keeps amazing doctors by doing things they did not expect from her.  She pulled herself up to stand around Easter.  She sat up before the age of two and they did not expect that.  The therapist was hoping and it was her goal.  I hope I did not offend any of my readers or followers, that is not my purpose.  My purpose is to inspire you not to give up, pick yourself up and keep on fighting when times are tough because, life can be unfair at times.

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4 comments:

  1. Miranda is a perfect, beautiful angel.. God Bless her and your whole family Jolene.. I am praying for you all. Miranda's story is definitely not fair.. Hugs..

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    1. Thank you Mimi. She definitely is a perfect, beautiful angel and one so deserving of any prayers.

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  2. It never ceases to amaze me when a child has the deck stacked against them, and they don't even seem to consider giving up or whinging about it. This poor little dear has suffered so much, as has her family, but the fact that they are all pulling together, as a unit, to make life as best as possible for her....that's inspiring.

    Anytime we whined about fairness in my family, the parental response was "life isn't fair" (which is true- life isn't a balance of good things happening to good people and bad things happening to bad people, no matter what Disney tells us). It's frustrating, but in the end it's all a series of random events and WE assign "good" or "bad" to them. It's sad that Miranda can't have an active, "normal" childhood, and that her parents and siblings have to sacrifice and struggle, but it's also inspiring to see people, like you, address it.

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  3. Beautiful post, Jolene. She has a wonderful aunt too!

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