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 ~

Storms and Rainbows

"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 ~
(Keep her in your prayers please.)


So much is talked about the rainbows after the storms. But what it doesn't talk about is the damage left by the storms. Someone has to clean that up and rebuild. Even once the journey has begun, storms will often hit. Often without any warning. During the storm, all that you are doing is going through it day by day, minute by minute praying you survive mentally, if not physically as well. These storms can last a very short time to years and years.... The severity varies greatly. Sometimes you have light to guide you during these storms, sometimes not. The light varies in brightness as well. Sometimes the storms are just rain and sometimes it's a category 5 hurricane.....

Today I felt a storm hit. I have known it was coming being that my children have MRI's and stuff soon but I didn't expect to have to fight insurance again already..... We are going to suffer for it this time.... Hopefully by my son's surgery it will be settled... I hope... Honestly I'm freaked out a little but it all works out.... It has to.... I'm trying to keep the faith... The hardest thing in the storms is to still hear God's voice through the roar of the storm....

"I was sure by now God you would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say amen
That it's still raining
As the thunder rolls
I barely hear your whisper through the rain
I'm with you
And as your mercy falls
I raise my hands and praise
The God who gives
and takes away"


Right now I'm not sure what God is trying to say other then to be patient..... I got that hint while checking e-mail yet again today waiting for our schedule of appointments ahead..... PATIENCE ISN'T A STRONG SUIT YOU KNOW!!! :) What I fear the most on this part of it is how it all will be covered..... One can't get blood out of a turnip. I know my children are in good hands though. Besides, this momma knows how to roar like a good old momma bear. It's not the first or the last time I have had to roar to get things done....... I admit I'm a worry wart who is an anal miss-plan-it, must have a plan A-Z and have things DONE early. Gee, I wonder why I am that way! Because I have to be and things don't get done by clinics and insurance otherwise!! (I'll shut up now. lol)

As hard as it is sometimes, we have to toughen up too.... Yet we have to have time to let our guard down and rest from the battles of everyday life.... That's harder sometimes.... Finding rest when we feel like we always have to be ready to fight, defend and carry on no matter what.... Many of us wonder what true REST is.... Yet God tells us to find rest in Him.... Shutting up my mind of thoughts is the hardest part in doing that....

Rest in the Lord

By: Melissa Whitney - I think

Based on Psalm 37:7, "Rest in the Lord, and wait patiently for him..."

Often we are tried and troubled
Many a care have we;
Jesus knows each thought, each feeling,
He sees what we can’t see.
He knows that every flame He sends
Will only purify;
Every flood can wash us clean
When He is by our side.

Rest in the Lord; wait patiently for Him
He will be your light when the way has grown dim
Rest in the Lord; wait patiently for Him
He will guide you, walk beside you
Just trust in Him.

When we cannot see why
A problem must arise
Jesus knows the end will make it
Worth our flooded eyes
He works each circumstance together
As part of His wise plan
He only asks we trust Him fully
And, by His grace, we can

Rest in the Lord; wait patiently for Him
He will be your light when the way has grown dim
Rest in the Lord; wait patiently for Him
He will guide you, walk beside you
Just trust in Him.

Things and people change
Though we wish they’d stay the same
Jesus is the only one
Who doesn’t ever change
He’s always there to lead and guide us
Be our faithful friend
His love can never, ever fail
He’ll be with us to the end!

So rest in the Lord; wait patiently for Him
He will be your light when the way has grown dim
Rest in the Lord; wait patiently for Him
He will guide you, walk beside you
Just trust in Him.

Written January 2005


Yet trying to get others to understand our journey sometimes is at least half the battle.....


http://www.theguardian.com/lifeandstyle/2013/aug/16/children-disabilities-special-needs-mumsnet-campaign
"Amanda Marlow, 43, who lives in Milton Keynes, says she has survived by growing a skin so thick she doubts anyone's disapproval could penetrate it. "Sometimes I think if I marched through the shopping centre with 'F off' written on my forehead, I couldn't be more obvious about it," she says.

She has four children, twins Elizabeth and James, 13, Oliver, seven, and Alex, six. Elizabeth has Treacher Collins syndrome (which causes craniofacial abnormalities); James has Asperger's syndrome and Alex has severe autism.

"What I'd like people to understand," she says, "is that these are my children. This is my life. It's not a bed of roses, but we try to make the best of every day. What would be nice is if people were kind and considerate once in a while, and gave us a bit of space. We're dealing with issues that most people haven't got a clue about, and it's intrusive when you get someone coming up to you and saying, he needs a clip round the ear when one of them has a tantrum."

If Amanda, Claire and Jane could ask the rest of us to do just one thing, it would be to stop staring. "It's fine to do a double take, but once you've taken in that our children have a disability, get on with what you're doing. It doesn't give you the right to gawp," says Claire.

Beyond staring, what angers Amanda is when strangers ask about Elizabeth. "They say, what's wrong with her? And I say, nothing's wrong with her. She's fine."

"Claire agrees: it's not a tragedy, she says, that her child has a disability. "We don't need pity; we're a very happy family and we just want to get on with our lives. I hate people calling me 'special' or thinking I somehow have extra qualities that enable me to deal with all this. The truth is that when it happened to me, I thought I couldn't cope.

"But a very wise person said to me: 'You'll cope because you have to.' And that's what anyone would do. Calling us 'special' or alluding to our great qualities makes us different, sets us apart, and we don't want that at all."

These and I would say the other huge thing many families face is the financial hardship. So many rely on Medicaid or similar programs.... Also being a special needs family is isolating. But also you learn about so many more families like you. Too often you only learn of these families via social media like Facebook. We are not alone though.....You may feel alone where you live, especially if you don't know many other families but you are far from alone in the world..... (I have to remind myself of this OFTEN as well....)


 What I Would Tell You
I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention; I’ve grown accustomed to the curious eyes of onlookers. Our daughter was born seven and a half years ago, and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we’d imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day — the car ride home. Cerebral palsy can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors, and as I passed you, our eyes met and I smiled at you. You smiled back, and for a moment I knew you knew I understood.

If I could, I would tell you — although you might not believe it right now — you will be OK. I would tell you to dig deep within yourself because you will find the strength and resilience somehow, and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all the services and resources available. Find someone who can learn how to care for your child so you can have breaks and so you and your partner can go on dates — even little ones like a 20-minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best, and no matter what you’re told by the doctors and other professionals, you know the answers. You will teach them about your child. At times you will question the validity of your intuition, but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy, and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less traveled, and you will feel alone along the way, especially in the company of healthy children and their parents. Yes, you will feel isolated, but know we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but don’t let the internet overwhelm you. Having some trust in what your child’s specialists tell you can be grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you this isn’t an easy life. It’s tough, there’s no doubt about it, but you’re capable, and the rewards are great. You may never see your child graduate from a university, walk down the aisle or give birth to your grandchildren, but you will feel pure joy when your child laughs for the first time. You will celebrate the moment when you connect with your nonverbal child. You will call your spouse at work to tell him that she has gained 4 ounces because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy, but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that others will not get it. They can’t. This is a unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile, but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bull.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts, and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it, like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from seven and a half years ago. And you will want to run to her and hug her and tell her that everything will be OK. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you will smile at them and walk by. They have their own path to travel, and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that this mother’s searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011

Lost
By : Carol Andrews
11-7-14

I could feel you within my heart
but the storms in the night pulled you away from me.
I called out your name but I can't speak above the thunder.
The rain is pouring out, beating upon my ravaged soul.
I reach for you but you aren't there.
I know you are out there but you are far away from me.
I can't feel you beside me now.
Where are you now?
Are you lost, or is it me?
Will I find you again?
I feel alone in the darkness without you.
I know I will see you again but when?
I can barely hear you with you so far.
Are you still in this storm or are you on shore?
If you are looking for me, leave your footprints on the midnight shore.
I may someday find you again.
Are you searching for me?
Can you see the storm tearing me apart at sea?
Will I ever find shore again?
As the night grows darker, the more blind I am.
In faith I step out toward my heart.
I am falling into despair.
The storm is drowning me to the eternal darkness.
To the place where eternal dreams are nightmares.
As I take my last breath I plea to you.
"Save me!" I whispered, as the darkness drowns me.
I look up and you are grasping the hand that is above my head.
I feel you pulling me up from the depths of hell.
I feel your strong grip as you shield me from the storm.
"Where were you Lord when I needed you?"
"I was there, you only had to call out to me."


Inspired from the song Hymn for the Missing by RED


Let's see how it all goes....
~ Special Momma ~

Chosen One (Or two in our case)

The Chosen One

Not just any child could walk this uphill road.
These children walk it every day, carrying a heavy load.
They show us heights of courage that we may never reach.
They show us what it is to fight a fight you cannot teach.

We stand beside them knowing there is no guarantee.
Except the one we started with to love them endlessly.
They are the special chosen ones, God knew it from the start.
He picked each child for cancer by measuring their heart.

The ones that measured the biggest would someday face the test.
The challenge is to understand-God loves them more, not less. He's using them to move our hearts closer to his own. Teaching us to trust his plan and fear not the unknown.

For God can move a mountain and part the raging sea.
He wants our struggles offered up and given forth to thee.
He smiles upon the chosen ones, before they're ever born and blesses them with courage to walk through any storm.

His love for them surpasses ours and cannot be denied, for in the dark of suffering his light will not subside. No matter what the outcome, there is the greatest peace, in knowing deep inside their hearts, His love will never cease.

~Author Unknown 
 

Now obviously not all children have cancer but really, this fits for all of our precious gems, our children.

I have talked about night before. Often I feel like I live in the night. Night isn't depression, not in that sense but night as in often in a valley, storm, etc. Often those storms are in my mind and I know that. Often it is because too many thoughts go through my head and I can't shut my mind up. Often it's because of recent appointments or upcoming. Or it's from knowing I have to deal with yet something else with insurance/school/headaches/doctor referrals, etc. It's always something. It's one reason why I listen to music or have something else going where I can focus on that thing. If I don't, my mind starts going and going. Driving alone on trips is the worst with my brain just going all over the place, especially after appointments. 

Light does overpower darkness!

How far away can a single candle flame be seen in darkness? If Earth were flat, or if you were standing atop a mountain surveying a larger-than-usual patch of the planet, you could perceive bright lights hundreds of miles distant. On a dark night, you could even see a candle flame flickering up to 30 mi. (48 km) away. Our eyes can see a galaxy 2.6 million light-years away. That's just our human eyes!

“I will love the light for it shows me the way, yet I will endure the darkness for it shows me the stars." Og Mandino

Think about a night light. It's not bright. During the day, you don't really see it at all but at night, it is the brightest so therefore it lights a path. A lighthouse helps boats come to shore. There is also a lighthouse at the Ronald McDonald House in Dallas. It is there so those at Children's Medical Center can see it and know their family is staying there. Jesus also calls himself the Light.
John 8:12 says, "Jesus spoke to the people once more and said, "I am the light of the world. If you follow me, you won't have to walk in darkness, because you will have the light that leads to life."

No matter how dark the journey is, there are lighter days ahead and in the meantime, find some light. It may feel like the room is the blackest ever but just one candle can light up an entire room. It's crazy to say but sometimes I find the best solace at night. Though sometimes at night, also brings the biggest thoughts..... Good or bad...

I believe in the sun even when it’s not shining. I believe in love even when I don’t feel it. I believe in God even when He is silent.

These three lines were scratched into the wall of a German concentration camp during WW2. In the midst of horror, someone declared their faith in the God that did not answer the way they thought He would.
- See more at: http://blog.precept.org/i-believe-in-god-even-when-hes-silent/#sthash.DRgFe081.dpuf

I believe in the sun even when it’s not shining. I believe in love even when I don’t feel it. I believe in God even when He is silent.

These three lines were scratched into the wall of a German concentration camp during WW2. In the midst of horror, someone declared their faith in the God that did not answer the way they thought He would.
- See more at: http://blog.precept.org/i-believe-in-god-even-when-hes-silent/#sthash.DRgFe081.dpuf

However, we have two special gems. So, to that I will remember too that it only takes a little light through those gems to shine beautifully like a rainbow that fills a room. May my two special, darling gems shine brightly, no matter how little or how much light is within and around them.


"I believe in the sun even when it's not shining.
I believe in love even when I don't feel it.
I believe in God even when He is silent."
~ Unknown ~
Found on a wall in a German concentration camp from WWII


Blessings!
~ Special Momma ~