Heartbreak and Joy

My family history research lately has been descendancy research.  I come across little Marie Anna Pintal yesterday while researching a 3rd cousin of mine.  She died at age 1 month due to spina bifida.  I was shocked to see those words spina bifida on an 1889 death record!! What mixed emotions I felt!  I am so sad for this family. I am just heartbroken especially for her mama.  There was no treatment available for spina bifida back then, no surgery, no antibiotics to be prevent infection.  Mostly likely Anna suffered a slow and difficult death. I wonder if her mom got to hold her and nurse her.  I wonder if little Anna had hydrocephalus also.  I hope her passing was peaceful and not painful.

On the other side, I feel joy.  Joy because when I heard the words spina bifida as a diagnosis for my son, I lived in a day and age of the miracle of modern medicine.  Without surgery when he was infant Evan would NOT have lived very long, just like little Marie Anna,  I feel Joy, because I was able to spend time with Evan today and watch him enjoy the great outdoors on his handcycle.   He lives a full and busy life and is a just a delight!  We are very blessed!

Rolling on the Bob Jones Bike Trail

I also feel joy for the Pintal family. Gideon and Emmerance had 15 children. Some died young, some lived long lives, some I don't know how long they lived. However, I know that they can be a forever family.  And, what great joy they will feel to be together again!!

Source:  "Massachusetts Deaths, 1841-1915," database with images, FamilySearch (https://familysearch.org/ark:/61903/1:1:NWQ7-F45 : 10 December 2014), Marie A. Pintal, 23 Jan 1889; citing Lowell, Massachusetts, v 401 p 121, State Archives, Boston; FHL microfilm 960,241.

https://familysearch.org/ark:/61903/1:1:NWQ7-F45?from=lynx1&treeref=LRR6-MQ9

ORANGE SOCKS

Have you ever been in situation where you received news that was devastating?  We have.  Twenty-nine years ago we were told our unborn baby would be born with a serious birth defect. It is amazing how fresh those memories are in my mind.  I was laying on the bed during the ultrasound, when the room got really quiet and the doctor's face just said it all without any words.  We were shocked. How could this be!  We felt alone and scared and just cried!  

My how time heals.  We have this amazing young man in our lives.  Not to say life is not without challenges, but certainly the good out weights the bad.  We are grateful for those who were put in our path to help us gain knowledge and ease the burdens.  So, of course we are happy to give back.

That is why when our daughter Rachel shared the following flyer with us, we jumped at the chance to give back and share our story.  

I contacted Orange Socks and when we were in Utah we were interviewed.  We want people to know that all lives are precious even little ones who will be born with birth defects.  They should NEVER be discarded, but rather loved and embraced.  There is much to learn from them! 

 We pray our story gives hope to others that find themselves in the same situation.  

You can listen to our story below by clicking the play button in the top left corner of the collage.  Please feel free to share our story with others who may need it.  Or, please consider sharing your own story.  Click here to go to the Orange Socks webpage to learn more about their mission and to listen to other stories. Thank you. 

Choices

Stories like this one here about choosing to abort a child with spina bifida really get to me.  Evan saw me writing a response and asked what I was doing.  I explained to him I was working on a comment about a story where a mother finds out her unborn child had spina bifida.  She decides to have an abortion, to prevent her child from suffering.  We had a little discussion that went like this:

Me:  Did you ever wish that I had abortion with you and you were never born?

Evan:  WHAT???

 

Me:  Life is hard when you have spina bifida, maybe it would be better not to be born.

Evan:  Nope, I like my life and want to live to a ripe old age!!

Evan didn't disappoint.  I knew he would answer that way. 

One of the shocking things about this story to me was the comments.  I am always appalled that so many think it's okay to abort a baby just because it has spina bifida or some other disability.   They stopped accepting comments so I didn't get my say, but I will share here on my blog.

I was four months pregnant when I heard the news that my unborn baby and sixth child would be born with spina bifida and hydrocephalus. We were told he would be a burden to our family, paralyzed, mentally retarded and possibly a “vegetable”. We were given the option to terminate the pregnancy. Our family’s choice was life. Our love was unconditional for all our children. We wanted our five older children to know that we loved them and if they were ever injured in some way and disabled their life would still be worth living. That decision was made twenty three years ago and I have never for a second regretted it. Despite the challenges he faces in life (wheelchair user, cognitive challenges, several major surgeries, and yes incontinent, etc) he is one of our happiest children. He is an Eagle Scout (his Eagle project was a wheelchair collection drive, with the wheelchairs being distributed to third world countries), he has chores and responsibilities to do in our home, he has cheered his siblings on in their sports, and they have cheered him too!! He plays power wheelchair soccer! He loves anything Star Wars and has the most wonderful laugh that lights up a room. He has traveled across the country and enjoyed the Grand Canyon, Yellowstone National Park, held an alligator, witnessed a Space Shuttle launch, been to the top of the Empire State building, and helped Al Roker do the weather on national TV, among other things.

I will admit it’s not always easy, but everyone has their challenges, it’s just part of this life. We grow stronger when we face those challenges, whatever they may be and do it head on. I am NOT a super mom or better than anyone for continuing the pregnancy. I am however a daughter of a loving Heavenly Father. I put my trust in the Lord Jesus Christ and did what was right!! The sad thing about Sara’s story is she will never know what her daughter’s life would have been like, or heard her laughter. People need to realize that the medical community is negative and give the worst case scenario. Prenatal scans do NOT tell the whole story and there is no way for doctors to know the true extent of damage done to the spinal cord, until after the baby is born. I am appalled to read so many think it is ok to just end a pregnancy because a child might suffer. Suffering is a part of our life on this earth. We learn compassion when we help those that struggle. We cannot and should not be the ones to determine when life is worth living. That is for the Lord to decide.

Right Under My Nose

I found a great on line interactive book for children with spina bifida. It's called, "Right Under My Nose". It can be found at http://www.childrenshospitalla.org/spinabifidabookeng/index.html .


There is one saying in some of the activities that go with the book that I love. "Scars are just medals of skin that show you have been brave!!" Most Kids with spina bifida have lots of scars!! So what a great way to look at them as medals!!

The little boy in the story has a cute little stuffed doggie named Biff. His mom was very smart and put scars on the doggie right where her little boy had scars. So the little boys stuffed friend has scars just like him!! Anyway, check it out. It was written for children with spina bifda, but I think that other kids could learn from it too!!

Burden or Miracle?

"They" said he would be a burden to my family, simply because he would be born with a severe birth defect. Cambridge dictionary defines burden as: something difficult or unpleasant that you have to deal with or worry about. "They" even went so far to suggest that his life would NOT be worth living. I have never for a moment considered Evan a burden in my life. He has an innocence that is endearing, always wanting to do what is right. Never once has Evan ever complained about being born with spina bifida. Therein lies the miracle! Miracle, from the Mirriam Webster dictionary: 1 : an extraordinary event manifesting divine intervention in human affairs 2 : an extremely outstanding or unusual event, thing, or accomplishment.

HAPPY BIRTHDAY, EVAN! I can't believe you are actually 20 years old!! You have indeed been a blessing in my life. I have witnessed miracle after miracle in your life. That you have survived twenty years with all your medical problems is indeed a miracle. I will never forget the time that your leg healed from that severe burn in one weeks time!! Or when your potassium dropped so dangerously low that you had a grand mal seizure. Or, that you survive those horrible 41 days in the hospital following spinal fusion surgery and all those complications. I know that Heavenly Father put you here on earth for a grand purpose. You have helped my faith to grow in ways it never would have grown without you in my life. Your laughter and love for life warms my soul. I'm honored to be your mom and love you dearly. Happy Birthday.