Beauty from ashes

As I talked about yesterday (Well, day before yesterday..) many times what we see, want, think burns down. We are going along with our plans, our lives then BOOM! It crashes upon us. It crushes us and causes us pain. When we face the storms, what is left is the ashes. What is left has to be rebuilt but it won't be the same.We must rise up and find the beauty from the ashes.

The truth is, suffering is a universal human experience, it is not dependent on a diagnosis. We are all broken people living in a broken world. None of us are exempt from suffering.
~ Ellen Stumbo ~

"When the storm passes and the sun shines again, it's clear to see the damage. The heartache truly sets in as we begin a new journey."
~ Susan Guy ~

Yet sometimes what does get rebuilt, the new journey becomes better then what we had before. Often what gets rebuilt, we see the blessings in that too. We are never the same but we do change.

My first pregnancy went well. I never dreamed or imagined that we would begin a life of medical appointments and surgeries. That reality didn't sink in till we got the first official diagnosis when she was three months old. My next two pregnancies I was more aware. When I miscarried, I went through the grief of it. The day my angel would have been due, I found out I was pregnant with my son. The whole pregnancy I wanted to enjoy but couldn't totally because of the fears of another loss. The miscarriage changed me. Yet on the flip side, it made me more grateful and more willing to enjoy the little things. Beauty from the ashes.

The day my childrens' pediatrician confirmed the craniofacial with my son, I had to find the beauty in the ashes. And I have. His laugh is contagious and he flirts with everyone. That's just the start. When I found out he has Chiari Malformation, I had to find the beauty in that. I am honestly still trying for that one..... Yet I have no regrets. I do not! My children no matter what are worth it. God gave me my two gems and they will indeed shine as God allows them to and they are willing to.

Those who know who my children are, know they are special gems. Literally.

No matter how dark the storm, crash, trial, etc is, beauty, the rainbow, light, etc can always be found. Even if it's just a sliver, it is still there. God uses these storms to help us grow in our faith.
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. Isaiah 43:2 NIV

Waiting
Abiding
In
Trust!
W-A-I-T

Always remember this on your journey as well. It's not always easy, that's for sure....

~ Special Momma ~

Crashing

"But rains pour down upon us, storm clouds darken the skies and we get lost in the storm. Have you been there? Wandering in the darkness, crying out only to be greeted with utter silence?"
~ Lesley Hitchens ~

When I was pregnant with my son, there was some speculation to if he would have the same craniofacial issues that my daughter does. The marker given would be the Brachycephaly. He was due July 4th but arrived June 13th after labor started via c-section thanks to him being breech. My OB teased about him being a butthole baby because he decided to try to come butt first the last second. lol When he came out and soon after started crying, I cried. I had a miscarriage (March 19th, 2013 no heartbeat) before him and on what would have been my angel's due date, that was the day I found out I was pregnant with my son. My rainbow after the storm, my rainbow baby. My OB followed me in both pregnancies and was the most supportive of our decisions. If we ever have anymore children, I will keep using him. We had someone else for my pregnancy with my daughter though the OB I had after is the one who delivered my daughter.

Anyway,

When my son was born, they said likely craniofacial. Before breakfast the following morning, the pediatrician walked in and confirmed it. My hormones helped nothing....I cried. I cried because I hurt from the cesarean, I cried because I was honestly mad at God for allowing my son to have to face the same as my daughter and honestly, I cried because I blamed myself for it. The nurse who was on duty that day held me as I cried. She soothed me as I just let it all out. Then she got me pain meds.

Soon after I got this card with my breakfast.

I knew there would be a chance but that moment with the pediatrician, my world crashed all over again. Many times since my daughter's first diagnosis, we have dealt with crashes in one way or another. During those times, I know I have not handled them the best way possible. Who really does? I had times of yelling at God to cursing myself for not being good enough to thinking that what my children have to go through was my own atonement, God punishing me. Both of my children have more then the primary diagnosis. I still struggle to not figure it all out. Figure out the why's and who to blame, which usually our nature is to blame God.

Many times we have had to face the ashes of what we thought we would have, could have, should have had. We have built our dreams, our wishes, our wants but then it burns down and all that remains is charred dreams and ashes. Beauty can come from ashes though. We expected Italy eight years ago and got Holland. Now we have two in Holland. Beauty from ashes. I will post about that tomorrow. 

Stay tuned.
"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." Joan Ryan, The Water Giver: The Story of a Mother, a Son and Their Second Chance

Blessings!
~ Special Momma ~





I posted this HERE as well. That blog is different from this one but yet some posts can really be shared here as well.

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 ~