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 ~

Mom to blame?

I have copied a blog post over to here that really struck at me today. Mommies of Miracles shared it. 

http://www.bloom-parentingkidswithdisabilities.blogspot.com/2013/02/why-blame-mom.html 

"Historically it's been mothers who are blamed when children are born with disabilities. In earlier times we were thought to have sinned, while today the belief that women can prevent birth defects, by what we do or don't do during pregnancy, is rampant. And so is its unfortunate corollary: that women who give birth to a child with a disability caused it.

Public health messages that suggest mothers can prevent most defects by taking care of themselves during pregnancy abound.

According to the U.S Department of Health and Human Services website, a healthy baby is the outcome of these five steps:

Five Ways To Have A Healthy Pregnancy and Baby

1. See a doctor or other health-care provider from the start of your pregnancy.

2. Don't drink alcohol, smoke cigarettes or take drugs.

3. Eat healthy foods, including fruits, vegetables, low-fat milk, eggs, cheese and grains.

4. Take good care of your health and exercise sensibly.

5. Have your baby checked by a doctor or health-care provider right after birth and throughout childhood.

More current information (including the importance of folic acid and risks associated with obesity and diabetes) is listed at the Centers for Disease Prevention and Control. 

Yet we know from the March of Dimes that the cause of most birth defects—up to 70 per cent—is unknown. It follows that in most cases a woman can't control whether her baby is born with or without a disability (unless she aborts a child diagnosed prenatally). I bet you most mothers of children with disabilities followed the five tips above to the letter. 

So why are we led to believe our baby's health rests solely in our hands?

Consider this Healthy Babies Are Worth The Wait t-shirt I found as part of the Prematurity Campaign on the March of Dimes website.

What is the meaning of this, I thought? Women don't choose to have premature babies because they're impatient. Most preterm labour, in fact, can't be prevented. "Our analysis shows that the current potential for preterm birth prevention is shockingly small," said Dr. Joy Lawn of Save the Children, who led the first multi-country study looking at the causes of premature births and how to reduce them, published in The Lancet last November. So why suggest that women can control premature births?

Apparently the Healthy Babies Are Worth The Wait initiative targets women who consider scheduling a C-section before 39 weeks. "If possible, it's best to stay pregnant for at least 39 weeks," says the article.

This campaign won't touch the rate of premature births, which declined in only three countries of 65 from 1990 to 2010 according to The Lancet study. That's because asking your obstetrician for an early C-section isn't a major contributing factor.

But how will a mom of a preemie with disabilities feel when she reads that t-shirt message? What if a sibling of the child with disability reads the shirt and asks Mom why she didn't wait?

Yesterday I read about a new March of Dimes book called Healthy Mom, Healthy Baby in this New York Times' article: Too Many Pills in Pregnancy.

According to the Amazon description, Healthy Mom, Healthy Baby empowers "mothers-to-be... with more information and positive steps than have ever been available before to ensure both a healthy pregnancy and a healthy, happy newborn."

What?

If most causes of birth defects are unknown, "positive steps" taken in pregnancy can't guarantee a healthy baby.

The book is mentioned in an article in which the American Food and Drug Association estimates that at least 10 percent of birth defects result from medications taken during pregnancy. According to the article, a recent study shows inaccuracies in online information about which drugs are safe, which means women who choose the Internet over a doctor's consult may receive faulty advice.

That's critical information for women, and I can't imagine anyone arguing that we shouldn't carefully weigh the risks and benefits of medication use with informed doctors.

But don't suggest that healthy moms who do all the right things during pregnancy have healthy babies!

Titles like Healthy Mom, Healthy Baby feed this magical thinking. And they reinforce the popular fallacy that mothers of disabled children did something wrong to cause their child's condition.

In a recent piece called Pregnancy and blame on Conversations, an Australian news site, author Kathryn Knight writes about how simplistic public health messages about birth-defect prevention diffuse into the culture. We all know parents who've been been the recipient—at school or on the playground—of judgmental questions like: What went wrong? Didn't you get the test? Why didn't you terminate?

And that line of questioning isn't limited to an uninformed public.

I have a son with a rare genetic condition. The way a researcher described it, when my chromosome 8—let's call it a green ribbon—exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped red-and-green ribbon, a minute piece was left out. That random error at conception caused his disabilities.

Yet to this day (he's 18) I'm asked by health providers for a detailed pregnancy and delivery history. "But the genetic condition occurred at conception," I will implore, as the 20 questions about my pregnancy are trotted out. "It had ALREADY happened!"

A blog in Three To Be's Parent Advocacy Link yesterday had a similar theme: 

"When Maclain was born, I blamed myself very heavily for a long time," writes Brenda Ferland Agnew. "It was my fault that one of my twins had died. I should have known sooner that something was wrong. I should have gotten to the hospital sooner. If I had done things differently both of my babies would have survived, and Maclain wouldn’t have been born so early. I could have prevented his brain damage if I had done something more. I carried this with me everywhere I went, with every move I made. It ate away at me, and kept me awake at night...

"A year and a half after his birth, we received confirmation that Maclain’s brain damage was caused by a condition known as Kernicterus. He was not treated for jaundice, and this was what caused his cerebral palsy and his hearing loss. We had suspected it for a few months, and after a visit to our neurologist, we got a letter that ruled out his brain damage having been a result of any intrauterine insults, or because of the Twin to Twin Transfusion...

"I was so angry that I had been made to feel by all the medical professionals, that my son had disabilities because of something I had done wrong."

We have less control over a myriad of things that can happen to a fetus than books like Healthy Mom, Healthy Baby—or Five Ways To Have a Healthy Baby tip sheets—would have us believe.

Let's speak the truth about how much we don't know about the causes of childhood disability and, more importantly, how to prevent it. Let's tell the truth about how Healthy Mom can just as easily produce Unhealthy Baby, or Healthy Baby with a Disability (because disability is not necessarily synonymous with poor health!).

Every mom wants what's best for her baby. In most cases when congenital problems are found, it's not because of something we "did." "

So, those of you that have children, how many of you were blamed for one thing or another about your children? I have on several occasions. I have been told it would be cruel of me to have other children, I have asked for this journey to be harder because I chose to have my son anyway, etc. I even have blamed myself..... Thinking when we have been in really rough patches with my daughter that what was happening to her was my atonement.... God's judgment on me for something I had done in the past. Lies, yes but we all have had guilt at one time or another. The hardest part sometimes is seeing past the lies and knowing that they are indeed lies.... All of our children are blessings no matter what "label" is on them. 




I'm going to end my post with this:

To all us "special" mommies!
Did you ever wonder how mothers of disabled children were chosen?
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard.
He's used to profanity" Finally He passes a name to an angel and smiles.
"Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in midair.
God smiles ..............."A mirror will suffice"

Cheers!
~ Special Momma ~