Tuesday, July 2, 2013

Motivational Mondays - Micah's Inspirational Existence

Today I am featuring another TTTS related story...with a twist.  So far my guest bloggers have written about what they have done with the after affects of a trial of life.  And today's guest, despite that not being the focus of her post, has done this too as Melissa is much like me...ever present in TTTS and twin groups supporting and educating those who are going through this disease or have the potential to walk down the path our footsteps have taken.  But today I have asked her to show us another side of the inspiration of these trials... the view of the world from the eyes of her very special survivor, Micah.  Or maybe I should say the view of the world surrounding  her very special survivor.  Enjoy Micah's story just as I am sure that the other's in Micah's life truly enjoy him.

When Jodie asked me to be a contributor to her blog I was a little bit surprised- it seems
like most of her contributors have all "done" something. Service organizations, world
wide Facebook events, fundraisers for awareness, etc. I really wasn't sure why she was
asking me, or what I could even say. But in her request she asked me to share Micah,
my surviving twin, and how he inspires me and others, and maybe a little of how I have
chosen to react to my trial that started with TTTS. And that, I can do.
Meet Micah:
He loves being outside, hearing cars, and airplanes and helicopters and especially
birds. He likes reading books, and turning the pages. He loves music, and has his own
lists of his favorite songs. When his favorites come on he gets extra excited and starts
dancing. Micah is a typical boy who loves playing on the iPad and thinks any noise
related to gas is hilarious, along with any other unexpected sound- like things blowing
up on Mythbusters. His giggle is one of the most delightful things in the world- and
anyone who has heard it tries hard to make him do it again. He whines when he doesn't
get what he wants, throws a tantrum when his little brother steals his toys, and cries
when things make him sad. One of his favorite things to do with people is give them
High Fives. He also loves the feel of hair and will be your best friend if you sit next to
him and let him play with your hair. Watch out though- he is sneaky and will catch you
off guard and yank a piece out just so he can play with it. The most special thing about
Micah is the joy he brings into people's lives. Micah loves people, and loves life. People
-young and old- can feel this and they love him because of it.

  • When Micah was less than a year old a complete stranger who had sat behind us in a
church meeting took the time to find out our names and address and write us an
anonymous note just to tell us how much looking into Micah's face impacted her and
how special he was.
  • My cousin who was going through a very difficult time in her life would come over and
just hold him and play with him - because he made her feel better.
  • My sister-in-law was sitting at work about a year after Micah was born (she worked at a
lab at the university she was attending) when one of her co-workers started proclaiming
that any pre-term baby that was sick, or had brain damage should just be "let go" (to put
it in kinder terms). That all they would ever be was a burden on their families and
society at large. That it was not possible for them to have any quality of life. She tried to
ignore him and not listen (she is very reserved and not confrontational at all), she finally
had enough and said "my nephew was born at 28 weeks, the doctors thought he was
going to die, he is severely disabled and he is the best thing that has ever happened to
our family".
  • When he was three and started riding the bus to pre-school the bus driver would tell me
how everyone loved him and the pre-schoolers would all have to say hi and bye to him
every day.
  • We had special people when we went to church that volunteered to watch him so we
could go to our classes- and despite us having moved three or four times since then still
love him and have a connection with him.
  • We have children down the street that think of Micah as their special friend and talk
about "remember when we did this with Micah and that with Micah", and are sad that we
are leaving. (Moving again :-)
http://www.youtube.com/watch?v=2P7YZSf8hQg (This is a video I made for family for this past Christmas- you can meet Micah better by watching this than by anything I can say)

If you couldn't tell, Micah is a special little boy. A special little boy with special needs.
Micah is severely disabled. At the age of six he is not talking, not walking, and is starting
to learn to sit up. He is on a puréed/liquid diet, and just started self feeding- using a bottle- at the age of four and a half. He has Cerebral Palsy, Chronic Lung Disease,
Optic Nerve Hypoplasia (his optics nerves are smaller than they should be so he is
visually impaired- he can see but we don't know what). He also has Hydrocephalus and
has gone through 10 brain surgeries related to that- three of them in the first six months
of his life.

Spencer and Micah

Micah and his identical twin brother Spencer were born three months prematurely, due to
complications from TTTS. (You can read the full detailed story here: http://katbiggie.com/ttts-tuesday-micah-and-spencer/ )
Four days after they were born the doctors suggested that we
let both of our boys go due to the assumption that they were going to die anyway... They
were both extremely sick, and had both sustained enough brain damage that the NICU
doctors - who see sick, premature babies every day- were shocked. But we couldn't- we
had prayed for, worried over, loved these babies more than is possible to describe, we
believed that miracles were possible, that God does answer prayers, and had faith that
if it was God's will, we would be able to take our babies home (something the doctors
said that even if they survived might not be possible). So we prayed, and our prayer
became "Heavenly Father, we love these babies, these precious sons. If it be Thy will,
we would like to keep them here with us. However, if that is not thy plan then we will
trust you in that as well. So, if it is all right with thee, we are going to hang on to them as
long as they stay the same or get better. If they get worse then we will know they are
being called home and we will let them go". Four days later our sweet Spencer, Micah's
special twin, got worse. With nothing else the doctors could do even if we wanted, he
died in our arms. The first and last time we held him.
That same day doctors suggested we should let Micah do the same thing, say good-bye
in our arms, because it was only a matter of time. We almost did- why put off the
inevitable? But then we remembered our prayer, and we chose to hold on until we were
shown differently.
And Micah didn't get worse- he stayed the same, and then he got better. Well enough to
come home after 96 days with nothing more than oxygen and an NG tube (to
supplement his bottle feedings) and the NG tube lasted only a day.

Micah has four older brothers including his guardian angel Spencer, and two, soon to be three,
younger brothers. Not one of them has ever shown any resentment of Micah and the
care and time required to take care of him. When I ask them what they remember of
when Micah came home and things were most intense their favorite memories to share
are all the things they "got" to do to help me out. Every morning when they leave for
school, and every night when they go to bed they don't go until they have given Micah a
hug. My younger sons love being around him, (sometimes more than he likes) and Zach (closest in age) has become his little helper, bringing him toys, turning his videos on/off, helping him play on the iPad. All of my boys have become unselfish, service minded, accepting, loving confident
patient people. Most of that due to our life with Micah, and the love he shows us.

As a mother of an angel, and a mother of a son with special needs, I have heard many
times the sentiment "the Lord only gives you things you are strong enough to handle"
and a similar one "how do you do it? I could never do what you do".
Losing a son is not easy- grief is a harsh road to travel. Raising a son with special needs is not easy. Physically, mentally, emotionally, even spiritually sometimes, it is draining and taxing. However despite all of that most days I am able to go about with a smile on my face, with joy in my heart and more importantly- peace. I am able to do that because I have chosen to trust God- completely- and I try to keep an eternal perspective.
I believe that our Spirits- that part of us that makes us us- existed and lived
with God before we came to earth. I believe that life continues after this earth life, and
that the portion of our eternal lives that is spent in mortality is actually only a small
portion of what and who we are/will be. I also believe that while mortality is short, it is
crucial in determining what our eternal direction will be. I believe that innocent children,
and those that are as innocent as little children (I.e. those who do not know right and
wrong) automatically receive the highest of God's blessings. My religion teaches that
when we pass from this life we continue being us, with our same personalities, and
talents, and that we keep the knowledge we have gained. We also keep our
relationships, and people have the opportunity to stay as a family unit for eternity. Heaven is a busy place because those who have passed are busy preparing for the
Second Coming of Jesus Christ, and those who never learned of Christ are being given
the opportunity to do so.
I find comfort in believing that my angel son Spencer is busy helping his Heavenly
Father, and that when Resurrection Day comes, I will have the opportunity to raise him
from infant to man. Just as I would have had he lived, but at a time when evil will not exist. I find joy in knowing that he will be my son forever.
I firmly believe that Micah was given the choice to stay or join Spencer, and that he
chose to stay. Knowing that staying was his choice, and believing that this life is not all
there is for him, that his imperfect body will one day be perfect, gives me peace on the
hard days. More importantly though, his joy, and the joy others receive because of him
let's me know that our choice to give him a choice- to keep fighting to come home- was
the right choice.
Because of the peace I have been blessed with, I try hard to share a sense of peace with others. It is my hope that because of the increase of charity, of empathy for the heartache all around us that I have been blessed with, I am able to make a small difference for the individuals around me. I hope that through my interactions with them they will feel a small glimmer of the love that Heavenly Father has for each of them. Micah and Spencer have taught me that.

I said earlier that I often hear "God only gives you what you can handle." The truth is
that trials are not given to you according to your strengths. You have trials and God
gives you the strength to make it through, increases your abilities to do things you don’t know how to do, and blesses you with peace despite the trial.
From Micah I have learned that joy is a state of being. Joy in life is never impossible, and with him around- it is even less so

1 comment:

  1. I love this perspective! Joy in life is always there if we're willing to find it. So glad Micah brings so much! He is a cutie!