Baby Doe

I don't know if you have heard of this story or not. A friend on Facebook shared it and now I am. The story broke my heart.... We have come a long way with special needs children but we still have a ways to go.
http://www.downsyndromeprenataltesting.com/today-baby-doe-died/

Today Baby Doe Died

Today was the day in 1982 when Baby Doe died in a maternity ward in a hospital in Indiana. He died because his doctor advised his parents that they could “do nothing.”

As covered in this post, Baby Doe was a child born in Bloomington, Indiana. He was born with a disconnected esophagus–a condition that at that time could be successfully repaired 90% of the time.


But his doctor, Walter Owens, advised the baby’s parents to not consent to surgery and instead let him die. He advised them:

That it would still be a mongoloid, a Down’s syndrome child with all the problems that even the best of them have.  That they did have another alternative which was to do nothing.  In which case the child [would] probably live only a matter of several days and would die of pneumonia probably . . . . Some of these children . . . are mere blobs.

That was how Dr. Owens recounted the advise he gave Baby Doe’s parents in sworn testimony to the U.S. Commission on Civil Rights. Dr. Owens, himself, “had little experience with mental retardation, but he had a niece with a retarded child, and it seemed to be his view (though not necessarily his niece’s) that this had ruined his niece’s life.”
Two other doctors had advised to transfer the child to a hospital in Indianapolis for surgery. Dr. Owens reminded the parents that the surgery “could do nothing about the Down’s [sic] syndrome. *** ‘However, he informed the parents, ‘you do have an alternative,’” advising they could refuse consent for the surgery.  Regarding his niece’s child with intellectual disabilities:

Obviously this has colored my thinking on the survival of such children.  I believe there are things that are worse than having a child die.  And one of them is that it might live.

Jeffrey Lyon, a reporter, investigated the case and wrote a book entitled Playing God in the Nursery. From his interviews and investigation of medical records, he described Baby Doe’s very short life. By the fourth day, the baby boy

was crying from hunger, and his lips were parched from dehydration.  His ribs were sticking out, the result of respiratory strain caused by the tracheoesophageal fistula.  That afternoon, when the stomach acid started corroding his lungs, he had begun to spit blood.

Families petitioned to adopt Baby Doe and a lawsuit was brought to require medical care be provided. Dr. Owens testified in defense of his advice to let the baby die and other physicians testified that medical care should be provided. The court found:

Mr. & Mrs. Doe, after having been fully informed of the opinions of two sets of physicians have the right to choose a medically recommended course of treatment for their child in the present circumstances.

The court’s decision was concurred with by a Child Protection Committee hearing. A subsequent hearing was held to declare the child neglected under state law, but:

the Court finds that the State has failed to show that this child’s physical or mental condition is seriously impaired or seriously endangered as a result of the inability, refusal, or neglect of his parents to supply the child with necessary food and medical care.

[Let that sink in for a moment].
The Indiana Court of Appeals denied an immediate hearing to review the decision and the Indiana Supreme Court denied a petition for emergency relief to order medical treatment.
Baby Doe died six days after he was born in 1982 on today, April 15. Cause of death:

chemical pneumonia, due to the regurgitation of his own stomach acid.

The gross injustice throughout the Baby Doe case is not something to be forgotten.

http://www.downsyndromeprenataltesting.com/happy-birthday-baby-doe/

Happy birthday, Baby Doe

Today (April 15th, 2012) would have been Baby Doe’s 31st birthday. But, Baby Doe had Down syndrome and his doctor believed some individuals with Down syndrome were “mere blobs.” The doctor’s medical advice to Baby Doe’s parents was that they should let their child die from lack of care. I wrote about this in 2010. Re-reading the column, I was reminded of then-current examples of these views still being expressed and practiced. Lest we think this attitude towards withholding care to babies with Down syndrome is long past, just in 2012 academics argued in favor of  “after birth abortions,” citing the high termination rate for Down syndrome to justify their position. In 2014, Richard Dawkins, noted evolutionist advised that it would be immoral to give birth to a child with Down syndrome if the parents knew beforehand.
Lest we forget, let us remember today: Happy Birthday, Baby Doe.

Let that whole thing sink in.... This has been on my mind all day.... This poor child suffered horribly for days because a doctor let it happen, and in fact decided it should be. Does that make you angry???


This proves we still have a good ways to go before not just Down Syndrome is better accepted, but really how so many more differently abled children are viewed... This article I read a few days ago.

http://www.surprisingtreasures.com/2015/04/my-shocking-discover-about-inclusion/

I was at another “wonderful” IEP meeting, talking about the realities and possibilities of Bethany’s education.   The teachers raved about her contribution in each of their classes and revealed she’s on the honor role again.  Then they begged us to consider expanding Bethany’s hours at the school. (we are presently attending public school for the “specials”- Art, Choir, Speech, Drama, Student Council and I home educate the core subjects)
I once again reminded them why we are home schooling.   The bottom line is they didn’t want to accommodate Bethany in the typical classroom for core subjects.   We’re just not interested in her being pulled out to a special ed classroom to “learn” (long story- but let’s just say I don’t teach recycling and practicing life skills in my core classes. )  Take a look at the picture- INTEGRATION is NOT INCLUSION.

Is full #inclusion, #support and #modification of education an impossible #dream?

Click To Tweet

As I was explaining for the umpteenth time we didn’t want Bethany herded to the
Behavioral and severe, non-verbal special education class”, I could see a frown forming on Bethany’s para’s face.  She quickly spoke up.
Now before you read what she said, remember this is a special education para- trained with 24 years of experience!
“I think you’re really cheating Bethany out of an important experience.”
“Oh, what do you feel she’s missing by being taken out of regular classes and assigned to a closed class room?”
“Well, I really believe for her to adjust to her future life, she needs more time “being with her own kind”.  You know, at this point, she’s rarely with kids like her.  That’s not realistic.”
(HER OWN KIND?  isn’t that the ignorant phrase they used to say when it came to segregating blacks from whites? She didn’t have the smarts to stop at that point but kept babbling her uneducated nonsense)
“You know, one of the other kids with downs is in her drama class and she always goes up to talk to him.  She is drawn to him because she knows they’re alike.  She should spend more more time with them.”
I was shocked into silence- and that just doesn’t happen very often.
I wish I would have said-
“Her own kind?”
Her.  Own.  Kind???!!!!!
ALL people are her kind!
She belongs to the human race. Inclusion and integration are legislated to facilitate living together with respect and compassion- no matter what “disability” one has.  How dare you try to isolate and ostracize her from typical society where she will learn and grow and maybe teach others about compassion and respect.  
How dare you try to dehumanize and disrespect her by consigning her to a labeled group of “kind”.
So—–
as I deep breathe a ton
and try to quell my angry thoughts-
I force myself to thank the Lord for giving me eyes to see the beauty and diversity of His handiwork.  ALL of His handiwork.
I pray for the courage to keep pushing for accommodations and inclusion- but I’m also not going to hold my breath until it happens.  I’ll keep doing whatever I have to do to help Bethany learn to belong in the “real” world.

Surprising Treasure:   Acts 10:34 Then Peter began to speak: “I now realize how true it is that God does not show favoritism

Think about this...... What are we going to do to change this? I truly think we all can make a difference. This may not be 1982 or even further in the past when children with disabilities were frowned upon and worse but even now children with special needs are often seen as helpless, worthless, different, ugly, etc. More and more are finally starting to see just how much joy and happiness those with differently abled abilities can bring to this world but we still have a long way to go.

So let's go out there and show this world what our children are made of! Let our children bring some light. Make your day count!

Go get em!!
~ Special Momma ~

Weathered

Creed - Weathered
I lie awake on a long, dark night
I can't seem to tame my mind
Slings and arrows are killing me inside
Maybe I can't accept the life that's mine
No I can't accept the life that's mine
Simple living is my desperate cry
Been trading "love" with indifference yeah it suits me just fine
I try to hold on but I'm calloused to the bone
Maybe that's why I feel alone
Maybe that's why I feel alone
Me..I'm rusted and weathered
Barely holding together
I'm covered with skin that peels and it just won't heal
The sun shines and I can't avoid the light
I think I'm holding on to life too tight
Ashes to ashes and dust to dust
Sometimes I feel like giving up
Sometimes I feel like giving up
Me...I'm rusted and weathered
Barely holding together
I'm covered with skin that peels and it just won't heal
The day reminds me of you
The night hides your truth
The earth is a voice
Speaking to you
Take all this pride
And leave it behind
Because one day it ends
One day we die
Believe what you will
That is your right
But I choose to win
So I choose to fight
"One of the saddest yet most comforting things about being a special needs parent? You get more support by those parents like you that are in the hospital, social media and or Ronald McDonald house type thing then you do with most anyone who lives in your own community."
~ Anonymous ~
Oh so true.....

Honestly, I'm exhausted... We just got home from a six night stay in Dallas last night. Monday we found out my nine month old son has a 2mm Chiari Malformation type 1. Totally unexpected that.... Then it was decided that the cranal vault surgery for the bicoronal craniosynostosis will be done slightly differently in hopes that it will "fix" the chiari. I have researched to death about it.... When will I have the innocence that crying or a headache isn't a rational concern that something more is going on? Especially waiting the three months for surgery.... Yet learning that the Chiari will never be "cured" but maybe hopefully "silenced" was hard too....
"Oh you did this before, you can do it again"

Pffftt!! Perhaps yet the chiari definitely changes the journey a bit. I had been warned that just because my two share the same primary diagnosis, don't expect similar journey's with both. His chiari proves that. My daughter doesn't have chiari but does have other diagnoses.

I'm told I'm doing a good job with the kids and I need to realize it. How do I when I'm so out of control in what is going on? How do I get to where I feel like I really am if I can't stop? When my daughter has her asthma acting up or headaches being nasty or when I forgot her ADHD meds? Appointments out my ears, school meetings or concerns being brought to me.... When my infant son is so cranky and nothing is helping? How when I can't help but wonder if the headaches is something more sinister brewing again? How when now with my son he can't tell me what's wrong and he has cranio and chiari fueling each other? How most of all when I am their mother and I can't do anything about what is going wrong or not well? Isn't that my job as a mother to care for my children and to give them the best I can???? How can I do that when I don't know what is going on.......

I'm a veteran of eight years in this journey.....Days have ups and downs. Usually the only ones who ask about the kids are on Facebook and those who do ask around here locally really don't want to hear the truth, just the shiny, pretty, easy parts.... You know... Once you get the beyond "How are you?" "I'm fine how about you?" "Well, I'm okay." Even with people who know you fairly well get a glazed look in their eyes if you share beyond that. Enough glazed eyes as I get asked about the kids and when I tell the simplified truth, I see the eyes glaze over and they are ready to move on.... Most just walk away right then. Even those who I thought really wanted to know the truth. Life isn't always sweet. Period! Just go with the flow and say everything is good even if it's not. That's what most want to hear..... What if I'm not really okay today? Would you really want to know that? Would you still say you will be there for me if I really share the truth? Know all or none. Don't be lukewarm! I totally get those who don't understand but instead of running away, at least try to reach out. Despite the news in Dallas, being there to one extent was a reprieve..... In a way.... 

Sometimes I feel like rest will never come..... Sometimes I feel burnout despite that no matter what, life keeps going. I will say this though, my children will always be worth it. Other days like this week in Dallas, I was very thankful for those at the Ronald McDonald House with me who totally understood the journey. Of course no journey is exactly the same but many of the same feelings and thoughts are there.... The biggest being "What if..." or "When will..."
http://www.healthline.com/health/guide-dealing-stress-caring-child-special-needs

"Studies have shown that the extra burden on parents raising special-needs children is extreme. Researchers at the University of Wisconsin discovered that mothers of adolescents with autism experience a level of chronic stress comparable to combat soldiers. What's more, a separate study found that mothers who reared children with special needs for over a decade decreased their life expectancy by up to 12 years."  

I'd wager that this would fit for much more then the parents of children with Autism and fit for many families of our special children as well.


"Many parents of special-needs children place huge pressures on themselves that add to their stress. Some examples include:

• "I must give 100% to my special-needs child all the time or I am a failure as a parent."
• "I should always put the needs of my special-needs child above my own needs."
• "I should feel guilty if I take a break from my caregiving responsibilities."

Instead of proceeding with these assumptions, you must learn to develop realistic expectations and recognize when this type of negative thinking is derailing your coping strategies. Think of alternative messages that are self-empowering and that allow you to be "healthily selfish." Replenish your energy and know your limits. If you remember that everyone--including parents of special-needs children--has needs, you'll set the right tone for the whole family."

The hardest things for me at least is:
1. Asking for help
2. Having faith that someone will REALLY want to help AND will seek to understand so therefore we can be understood. (Rare it feels)
3. Trusting enough to give up control over what I at least perceive that I can control.... God will always be working with me on that one.....

What I need to remember the most is this:

The pieces we see today


The pieces we see after our journey here is finished.

(Artwork credit to Medical City Children's Hospital. Yes I took both to post here.)

Every single little piece (picture) will eventually come together to create something bigger and more beautiful as a big picture. The darkest pieces are some of the darkest, most lonely times in our journey. The whitest from some of the best and everything in between. I wonder what this journey will have created by the time it is all over....

May God continue to show me.... May his patience with me be everlasting....

I'm going to end this post with some laughs. I LOVE this page.
http://www.facebook.com/shutuapboutyourperfectkid/posts/10153174318237889


Never lose the faith no matter how dim life seems in the moment, it will get better.... We all just have to hang on for the ride and see who can hang on with us through it. Look at it like this, at least we can have fun watching how funny some look falling off our ride that was given to us. I just pray that we ourselves don't..... And if we do, it doesn't hurt too badly to get back up and keep going.... We have no other choice....

~ Special Momma ~

Our label (diagnosis) is not our name

I am writing this one in honor of a little boy I follow on Facebook. His name is Blake and he has Trisomy 13. He just turned a year old. Doctors don't want to do much for him because he is "incompatible with life." There was a little girl named Annie as well. She had Down Syndrome and because she did, a heart transplant was refused for her. She suffered till she passed nine months ago.There is a little boy named Andrew who was a victim of Shaken Baby. Doctors not long ago said he had little brain activity. He is thriving and doing well all considering. He looks nothing like a child with very little brain activity!

Doctors basically taking the label of diagnosis and playing God. It's not just doctors though either. Teachers/administration, psych people and even strangers! Does that infuriate you? Do you agree with those doctors and others? Do they have a right to tell a parent that because of a diagnosis, they have no right to life? Do they have no right to at least be able to COMFORTABLY enjoy what life they do have? Only God knows how much time each of us have. Way too many die too soon we say yet what about those who live when they were told they would not? How about giving them a REAL chance?

When will people get it that the label of a diagnosis is NOT who that person is? Would you introduce yourself as "Hi, I am diabetic, how are you doing?" NO! You would do it as, "Hi, MY NAME IS _____ and I have diabetes but that's not WHO I am." So many don't see past that. How many get stared at because they look different? How many get called "Retarded" (I HATE that word) just because they have any sort of learning disability? How many get told "you can't do this or that" because of the diagnostic label they have? WAY TOO MANY!

Blake according to statistics, should not be alive. Another young man I follow in these blogs has Trisomy 18 His name is Aaron. He's thriving. That diagnosis is supposedly a death sentence diagnosis as well. Does that mean none of these children deserve a chance? NO!!!! GOD ultimately decides. Are doctors and others God? Most of these families who face life changing diagnoses are asked hard questions. Many are uncalled for.

 What are some of those questions? I for one have been asked why I chose to have another child knowing the risk of the craniofacial syndrome. I have been told before it would be cruel of me to have other children after my daughter. This was because of a syndrome that is 50/50.... Others have been told to abort their children. Or told their child will be a vegetable. I had one friend who was told her child just should be allowed to die already because she would only be a burden to society.
Those who have a "non visible" diagnosis it's even harder for them because you can't see the physical. ADHD, Autism, etc. Many of those families get told "Just give them a good spanking, that will fix it!" "You aren't parenting right! They are too spoiled." stuff.


"Only hateful people say stuff like that!" Actually not..... You would be amazed where us parents (or grandparents) hear this stuff from.... You would simply be amazed.

"How are you not full of hate then?" Grace.... And hard work.... Most of us have to make it a daily decision to work through that. Many of us can just take it as ignorance or at least people trying to help but it not be helpful. Some though are just mean. For me, it catches me most when it comes from those I would least expect it to be said from.

The best solution to me in dealing with that? Pray about it.... Pray for peace that surpasses all understanding... Remind them that your child has already defied odds and that they were wrong before and that your child(ren) will continue to defy odds till their last breath, whenever that may be. As for me, I will stand with my children and fight for them and teach them to fight for themselves. I will sit back and not take anyone telling me to give up. NEVER! I will fight for answers and solutions, always.

I'm not saying go see 20 doctors to get an answer you want BUT if you know one isn't treating you right or is refusing a necessary treatment "just because of the diagnosis" then find someone else till you find one that will give your child a chance.

I grew up being told that I would amount to nothing, be either institutionalized my whole life or in prison. I am none of those. I am thriving, surviving and I have two children and one angel to prove it. Defy the odds and go fight!!

Fight the good fight of faith!!!!!

Go get em!!
~ Special Momma ~