I (Robin) was asked by Texas Alliance for Life testify before a Texas Senate committee that is considering a bill that will close the door for ‘wrongful birth’ lawsuits. In other words, parents can sue doctors, nurses, hospitals (any medical person or place) because the parent wasn’t notified of their child’s disability and would have aborted if they would have known. They can sue because their child was ‘wrongfully born’. This is what I will read before them:
Erica and I were expecting our first child in September of 2001. We were completely excited about the potential. A home birth was planned. We had dreams of our child taking her first steps. Growing up with friends at church. Getting her driver’s license. Going to college. The list goes on and on.
After we crossed the 30th week of pregnancy, we visited the Austin Community College Nursing program for a routine sonogram. Our thoughts were simple. Let’s just make sure everything is ok. We were convinced that there would be no complications because Erica’s pregnancy had been trouble free. In fact, she didn’t even suffer from morning sickness, pains, or any other common attribute of pregnancy. The sonogram was taking a very long time, and they weren’t cluing us in on the fact that they were seeing something very abnormal. Almost an hour passed when the director of the program came in and told us that they would have to send us to a specialist because “they weren’t seeing something that they should”.
That afternoon we visited Perinatologist Dr. David Berry in Austin, TX for the official ruling. All our dreams and visions for our child came to a crashing halt when we sat in Dr. Berry’s office. His team had viewed our sonogram and confirmed the fears of the ACC team. Our daughter’s brain was almost non-existent. There was so much fluid in her head that the only portion of her brain was crushed against the skull. The prognosis was brutal. “Your daughter might not be born alive or live very long after birth. She could possibly be blind, deaf, and severely disabled. Most likely, there will be learning disabilities and mental retardation.”
We were given two options. The first option was to schedule a C-section at 38 weeks and go through with the original plan of life with all the associated negatives. The other option was to have a late term abortion. These were not legal in Texas, but we were given the option of traveling to Kansas or other states to end the life of our daughter before she was born.
It took us about 10 seconds to make that decision. We scheduled the C-Section.
She was born two days after Thanksgiving, November 24, 2001. After birth a MRI revealed that her condition was actually much worse than they originally thought. Instead of only hydrocephalus, she, also, had Alobar Holoprosencephaly. The brain surgeon told us she could be expected to live anywhere from 6 months to two years (if she was lucky). He gave us another choice. Surgery would ‘prolong’ the inevitable. Choosing to install a shunt in her brain would ease her pain and prolong life to two years, or we could choose not to install the shunt and let ‘nature takes it course in the next few months’.
It took us about 20 seconds to make this decision. The surgery happened the next morning.
While in the hospital, one doctor actually reported that our daughter would not have a ‘meaningful life’. After obtaining the medical reports in 2012, we actually saw those words in the official records. Our daughter “would not have a meaningful life”.
Kennady celebrated her 11 year birthday in November. She is the happiest fifth grader you have ever seen in a wheelchair. She speaks to us with a contagious smile.
Your heart will melt when you take her by the hand, and she starts giggling. She doesn’t know about the tension in the Middle East. She has never met a stranger and has no clue that people stare in the grocery store. You would have an extremely difficult time making a case for a “meaningless” life right now. She speaks volumes without words to all who will take the time to get to know her.
Suing a medical professional because your child was born with a disability is like suing CBS Sports because the 49ers just lost the Super Bowl….as if the network knew definitively who was going to win or not. If you had known your team was going to lose, you would not have watched the game. What does it say about your dedication to the team if you will drop everything at the sight of difficulty? If all odds are against the team and it looks as though they will lose, the team will still want to play and give it their best (regardless of what the TV network or the fair weather fans have to say about it). The game is really up to the team. The disability and chance for life is truly owned by the child. It is his or her right to have a chance at life to live or die naturally. Doctors are often wrong. Prognoses are often wrong. Who are we to usurp our authority into a situation where only God owns the rights?
One of the biggest oxymorons has to be a: “selfish parent”. Why do we ‘have kids’? Are they for our benefit? Are they so we can have a toy or someone who gives love to us? Are we satisfied because they are smart or because they score the winning goal? Are they beautiful because they fit the American/Hollywood standard?
As parents, we take ALL responsibility for that child until that child has reached the age of personal responsibility. If that child never reaches that age, then you, as the parent, must own that responsibility. That is part of living in the world in which we live. Things don’t go as planned. Hurdles, mountains, and deserts are to be crossed. When these challenges come our way, we don’t look to the nearest scapegoat in order to make ourselves feel better or skirt our responsibility. No, we do the right thing. We love our kids and raise them to be all they can be. We learn from them. We are changed into better people because we have allowed brokenness to be meaningful.
Sometimes the difficult decision is to “have the surgery or not”. Other times, it is “should we go grocery shopping today or not”
Every time Erica goes to the grocery store it is a spectacle. I (Robin) often try to get her to wait until I am home so she (or I) can go solo. However, there is always something going on and she can’t wait to go get her groceries.
It is a balancing act. 3 kids (10yrs, 8yrs, 6yrs). Shopping cart. A LONG list of supplies/food to purchase.
As she meanders through the store, they get strange looks. Of course, some folks are curious of Kennady’s condition. Some folks are asking themselves ‘why did they have more kids’. When we had foster care kids, I am sure people said, ‘who in the world are these people?!’ <<<<<SCRREEECHHH>>>> that is a tire noise for those of you who don’t recognize it. (now, insert song…”hold up, wait a minute, let me put some boom in it” and that should suffice for the interruption) I (Erica) am hacking the blog and adding in my own thoughts since my dear hubby wrote a blog and published it before I could add my own touch to it.
Yes. People did make comments. When I was pregnant with Avery, #3, people would say, “wow, you sure do have your hands full” to which my constant refrain was, “yes, but it is a good handful”. They would take long looks at us as we made our way through the store, pushing Kennady, pulling the cart with a two year old in it and a very large belly attached to me. Now, the comments have turned to stares and I am not quite sure if that is a good thing or not, I kind of enjoyed the small talk in the store. I am sure a lot of that has to do with the missing, super cute, chubby and smiling baby that was usually with me. Now they are bigger, louder and slobberier.
The awesome thing about us humans is that we keep growing and my little two year old is now a big 8 year old that does an awesome job at keeping his sisters chair going the right direction and not run anyone over. There is the occasional knock down of something here or there, but if that is the worst of a trip to the grocery store, we are good. I am still working on #3 to be in charge of driving his sister, then I will be sailing through the store, #2 driving the cart, #3 driving his sister and me, ME…walking through the store tossing things in the basket like a little kid at a toy store (until the money runs out that is)!
<<<Thank you for bearing with the interruption, now back to my husband>>>>
I am amazed when she comes home and everyone is alive, the eggs aren’t broken, and the milk is still cold!
We made a decision early on that Kennady’s condition would not take us from normal life. It was easy to say that when she was an infant. However, the bigger she gets, the harder transportation gets. The more difficult it is to keep her happy in certain environments. She can only stay in her chair for a limited amount of time. Then, she has to be stretched and diapers have to be changed. All these factors limit our ability to run out and do anything. Plus, our boys are still at an age where they require a lot of attention and ‘hands-on’ interaction.
We continually find ourselves reshaping our thinking. Get out! Don’t stop! Difficulties can shape decisions, but they don’t have to dictate or be the final authority. Improvising and changing is the name of the game. Get creative. Ask people for help. Pray for direction and strength. Rest. Stay home. Talk to friends. Stick to the non-negotiables.
One night recently when Kennady was in the hospital, Kennady’s home health nurse came up and sat with her so I could go out get some dinner and feel the sun on my skin. On my way out, I decided to step in to the gift shop because they had these big shiny red balloons that said “SALE”, which is an instant magnet for most women.
I proceeded to call my husband and tell him that this store had a very cute necklace and that it was thirty percent off, which made it only a mere thirteen dollars, and that seeing as we are in such a stressful time I should really do some sympathy shopping and buy this for myself.
Alas, this ploy did not work and I made myself leave the store empty-handed, content that I could use my money to buy myself food to put in my belly instead.
On my way out the door, there stood sweet Jesse. Jesse gave birth to her precious baby boy Wyatt, and her second child with Cystic Fibrosis, just a little over two weeks ago. She was on her way in to see Wyatt in the NICU and I was on my way out to get something to eat.
We stopped and chatted for a while and began to discuss our children and their special needs and how living a life with a special needs child shapes you in so many ways you never realized it would or could.
One of the ways that this life is shaping us, is through us shaping our children and the next generation.
Robin and I feel strongly that the challenges we and our children face in this life will build our character and make us stronger, if we allow it.
Character:
1 one of the attributes or features that make up and distinguish the individual
2 the detectable expression of the action of a gene or group of genes
3 the complex of mental and ethical traits marking and often individualizing a person, group, or nation
Wheew! That is a lot of things to cover, but we will focus on just one point this time around. Character: One of the attributes or features that make up and distinguish the individual.
Character traits can be good or bad, strong or weak, life-giving for life-taking.
Our boys both have a sister with multiple special needs, food allergies and last but not least, they are preacher kids (holla back atcha if you know what I mean).
Talk about opportunities to build your character.
Our society is so comfort driven that these things seem like huge boulders and walls to overcome.
This type of stuff grieves people, makes them want to stomp their feet, yell and say “this isn’t fair!!”
Things in the special needs world are complicated. Life in general is complicated and not “fair”.
Life isn’t “fair”.
Did you read that??
It’s not. No two ways about it.
Part of our problem though is that the America we live in today is a fountain overflowing with “Fairness”….or is it really?
We have abused the word fair until it is a worn out rag doll that had all it’s hair cut off and no eyes and looks like something totally different from what it was intended to be. The version of fair that we see is something along the lines of “if they have that, I should too”. Merriam-Webster defines this type of “fair” as specious: having a deceptive attraction.
Because something looks more attractive and like something we think we should have, we seem to think this is the “fair” option.
It seems like it is ingrained in us from birth. So when we have a problem in our lives, we naturally compare our life to someone elses and point the proverbial finger and shout “Hey! That’s not fair! My car doesn’t have shiny sparkly paint!”
So how do we go about re-training our brain, flesh and every other thing in us to honor and respect these scenarios in our lives?
First.
Faith. Faith in God. Faith that, whatever comes, good or bad, He is in control. Period.
2 Corinthians 4:17 ~
For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison
This is where the brakes are put on, on “fairness”.
Each of us has been blessed with an opportunity to live this life. To take each moment, each good time, each bad time, each hardship in and make a choice.
Are we making it match what the word of God says or are we making it match what the world says?
If we choose to make things match up with what the world says, we have chosen to fail. Life will never be “fair” and we will always get the short end of the stick.
With our boys, we remind them daily that “life isn’t fair”. They cry because they want to be like the other kids and eat whatever they want without fear of anaphylaxis, they want to go places without people staring at their sister, they want to watch movies that other kids watch, listen to music that other kids listen to. For Jesse and her children, this means not going to parties, not being around other kids with CF, not eating certain foods and many other issues.
During these times we give them space to share their feelings and validify the hurt they feel. After hearing them and letting them process through these things, we gently remind them, that this life isn’t fair. They are different.
Whether the situation is by choice or something they are born into, they are processing what “fair” looks like in this world. They are learning to throw out the beat up rag doll that doesn’t represent any part of the true nature of “fair”.
You can’t divide life “fairly”. You can divide a cookie in half and make it “fair” to two people. However, making this beautifully complex walk of life “fair” is robbing ourselves of an amazing opportunity to develop character. Character, that reflects mature humans able to live a life that is beautiful, even when life seems to be falling apart at the seams.
So, I hope that when my boys grow up (and me too), that we are able to not become blithering whiny babies at every turn, crying out that “life” (this beautiful, amazing and crazy hard at times, life) isn’t fair.
The bottom line…
This life is about living for God and to Him be the glory in everything.
Cry, give yourself some space, then pull up your boot straps and get on with it.
Here are 10 of the biggestDecisions we have made along the way:
Go through the with pregnancy and birth – the doctor gave us the option to end the life of our daughter 30 weeks into pregnancy. We would have had to go to another state that offered late term abortions. We decided to let God and Kennady have their shot.
Have the shunt surgery – The brain surgeon told us on Kennady’s birthday that we could have a surgery to release the fluid on her brain or that we could choose not to. Not having the surgery was a way of letting ‘nature take its course’. She would not live long with this scenario and could also have quite a bit of pain in the process. We decided to have the surgery.
Our family would not slow down or be invalid – We saw many families with disabled members that were not active in their church, community, or life. We made a clear decision within the first months of Kennady’s life that we were not going to allow her disability to restrict our behavior. She was going to be the best dressed in our family. She would be a part of our life. The older she gets the harder this is. We hold each other accountable to keep this decision.
A couple in Oregon are suing the hospital because their child was born with Down’s Syndrome. A CVS test during pregnancy said that the baby was healthy. Therefore, the couple went ahead with the birth. Now, after the baby was born with Down’s Syndrome, they are suing the hospital saying they would have aborted the child if they had known it had the birth defect.
Throughout our journey with Kennady, we have made several key decisions.
I remember like it was yesterday sitting in the doctor’s office while he explained Kennady’s condition for the first time. Erica was 30 weeks pregnant and we had so many wonderful aspirations for our first baby as we entered that appointment. Now, 45 minutes later our world was caving in. We were shell shocked. At this point, he only believed her to have a condition called hydrocephalus (fluid on the brain). This condition causes a lot of developmental issues because there is so much pressure on the brain.
He ran through the list of possible blindness, no hearing, mental retardation, no mobility, and so on. This list was long and daunting. At one point, I literally pinched myself thinking I was dreaming. I wanted to simply go outside, reenter the building and start the appointment all over again. Surely, they had something wrong. In the middle of my wondering, I heard the doctor say, there is one other option.
Your heart will melt when you take her by the hand, and she starts giggling. She doesn’t know about the tension in the Middle East. She has never met a stranger and has no clue that people stare in the grocery store. You would have an extremely difficult time making a case for a “meaningless” life right now. She speaks volumes without words to all who will take the time to get to know her.
One of the biggest oxymorons has to be a: “selfish parent”. Why do we ‘have kids’? Are they for our benefit? Are they so we can have a toy or someone who gives love to us? Are we satisfied because they are smart or because they score the winning goal? Are they beautiful because they fit the American/Hollywood standard?
What People are Saying