What I would tell you

After doing some thinking and talking about my son's sleep study results, I got inspired to write this. You may share as much as you wish. Comment if you think things could be constructively added and I'll add them.


I have sometimes been wildly, despairingly, acutely miserable,
but through it all I still know quite certainly that just to be alive is a grand thing.

~Agatha Christie ~

What I would tell you: Goodness, I can go so far and wide with this.... I prayed over this post.... I'm going to type till there is nothing left to say so this may be a long one.

First thing I will say before I share all of this: There is a set of sayings at my daughter's school that they are all learning to abide by. One of them says,


Seek first to understand than to be understood.

What I wish I could tell doctors and nurses:
Thank you for all you do and the hours you put in not just at "work" but outside of work too. Thank you for saving our children and for giving them the best life possible. I have one request though. Remember, they are our children and not just your patient that you see a thousand like us. What you may be used to seeing, we are not. What we see as not normal or borderline worrisome is something that we fret over or want answers for. Please don't look at us as paranoid or crazy or impatient. Be on our side, look at it from where we are, right here, right now. As hard as that can sometimes be, please remember, they are our children. When you say that something "isn't that bad" makes us feel inferior or worse, paranoid. It's bad enough to be brought up isn't it? Then please understand where we are when we seek answers to our questions and patiently help us understand your point of view as well as try to understand ours.


What I wish I could tell other parents:
First of all, really we are all the same. I don't see the need for cliques, competitions over who's kids are the best, who's house looks perfect or any of that. That's rubbish. What I see is we are all parents who have kids with different personalities, needs and abilities. We are not from different worlds, we are all from the same. Teach your children that as well. They have the same wishes and desires as my children do. To be respected, heard and most of all, loved.


What I wish I could tell parents like me:
If we want equal rights for our children, kindness goes a long way. Being defensive won't get us what we want. We need to be warriors and advocates but we need to be tactful too. Be what we need to be for our special gems, allow them to shine. Use sandpaper to make things shiny and smooth, not to destroy. I must accept that my children have struggles that others don't. I must accept my own shortcomings. I must accept that life is what it is. I must accept that I can and HAVE found the good in the bad. Don't live with regrets with your special and rare gems moms and dads. Cherish them, polish them and let the glorifying Light shine through them. The rays of light from our gems will shine toward anyone willing to cherish our gems for just what they are. Rare, valuable gems. On the days when all is falling apart, remember nothing is over. The story isn't over. Even if life doesn't go our way, maybe God's way really is better. I just wish my crystal ball worked. lol Don't ever get bitter either. Stay out of that because bitterness doesn't just affect you, it affects your children and everyone around you.



What I wish I could tell other children:
My children want the same things as you. We are not from different worlds, we are all from the same. You have the same wishes and desires as my children do. To be respected, heard and most of all, loved. Do not ever let a disability, race, gender or anything else stand in the way of feeling loved.


What I wish I could tell teachers and schools:
Anybody who teaches a child is a teacher. No matter what age. Thank you for the years and hours you put in to teach my children. Thank you for stepping up and helping to bring up the next generation. I have a few things to say though too. To the school district and teachers: My child is not a statistic. Put the ABLED back in disabled. Follow the IEP as written without cutting corners. That's what federal money is for. On the flip side, thank you for having our children in your schools but don't sacrifice their education just because it's harder to teach them. Include us in what is going on at school. Put cameras in classrooms so if there are issues that need addressed, they can be. Most of all, implement the "Bullying isn't tolerated" mentality. Don't just say it, DO IT!  Back to teachers: Don't lose your focus. Don't get so overwhelmed that you give up. Don't be afraid to ask for help. Your students won't remember most assignments, what period they had you and sometimes not remember what grade they had you. What they will remember is how you showed them love and patience.
Sometimes teachers, you are the only light a child has in their life. 


What I would tell my children:
God made you! No matter what the world says, remember that. You are a rare gem that is meant to shine in your own way. The way I see it, all of the rare gems are rare because they are the most precious. They were created differently and therefore are cherished more. The light that radiates out of you is different of that the world shows. Be different! Be you! Be kind and loving to those around you. Stand tall and proud. Do your best and NEVER give up!



What I would tell myself:
You really are not alone, even when you often feel it. Controlling and or micromanaging everything won't fix everything the way you want it or wish it. If something happens, don't blame yourself. Know you did your best with what you had. The rest is up to God. God is in control and pray to Him that your heart will be receptive to His wishes and desires not just for you and your husband but your children too. Remember the Serenity Prayer:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as Jesus did, this sinful world
as it is, not as I would have it;
Trusting that You will make all things right if I surrender to Your will;
That I may be reasonably happy in this life and supremely
happy with you forever in the next.

Amen



What I would tell God:
You are an awesome God. Thank you for all we have in this world. Thank you for my husband and my children. Lord, teach me, mold me the way you desire me to be. Open my eyes and my heart to Your will, not mine. Lord I pray that I learn and gain wisdom and seek your guidance in everything I do. Lord heal my heart of it's wounds and battle scars. Reassure me that I am not a failure and that my family knows I love them. Help me teach my children to fight for what is right and what they need but also be firm yet in Your will. Even though I don't understand now, someday I will. Even though my heart carries anxiety and fear of the future, YOU hold the future! Even though I don't know what your plan is, you can make beauty from ashes.

I think I'm typed out for the day now. Now that I'm a little emotional too after writing that last part....

Please most of all, don't lose your focus beloved readers.

Don't lose your focus. Life really is about learning to dance in the rain. Dance to the cha-cha! ;)  Life may be a cha-cha but I sure wish calories were burned during this dance.... I would quickly be the jeans size I was in high school! Amen?


Hope is a vital part of this journey. It is what helps you get up in the morning, move forward. Without hope, you can't hand your baby over to the paramedics, the surgeon, the nurse. Hope is why you do therapies, medications, appointments.

Tough times never last, but strong people do.
~ Robert H. Schuller ~
Blessings!
~ Special Momma ~

Rare Gene Day

The last day of February, which today also happens to be Leap Year, has traditionally been Rare Gene Day. It's always on the last day of February that they ask people to wear jeans for genes. You can also go on their website and make a pic like I did here. The text is what I posted on Facebook with the pic.

Today is rare disease day. My son is rare indeed.
Muenke is 1 in 30,000
Syringomyelia (syrinx) is 1 in 40,000
Chiari is 1 in 1,000
1q44 deletion is 1 in 1,000,000
That doesn't factor in delays and causes for that nor the other micro-array results.

Today is rare disease day. My daughter is rare indeed.
Muenke is 1 in 30,000
Some of the issues she has are unknown in stats.

I only posted those that were at least 1 in 1,000
My children are rare gems indeed.

Yet here my children are. Not letting the world bother them here. They love each other and hearing them both squeal over seeing the other one is so worth it.

Right in the middle of typing this post I got the phone call with my son's sleep study results. All borderline they say but not sure what stance the neurosurgeon will take. Yet coming back to this post and seeing the pic of my kids walking makes me smile among the anxiety my heart feels.

I'm also listening to Live on Forever on repeat again. lol *sigh* .........

No matter what I get told or what our "odds" are, I will always love my rare gems because no matter what the world has thrown at them thus far, they will always shine. They have rare genes and are rare gems.

Blessings!
~ Special Momma ~

Battle Fatigue

A few days ago I had one of my "moments" on social media..... Sometimes I think I'm too outspoken but.... Bear with me here as it all has a point. I need to get over some of the feelings but sometimes it's a giant mountain to climb.....




"Sometimes I wonder if our journey matters to anyone. Or if I matter. I know what the Bible says so don't get preachy but the battle is real. I'm exhausted, yet so much that I, myself need to get done before painters come tomorrow. Bumping into a friend was nice today. I probably did look like a zombie.
No rest for the weary.... I'm even second guessing why I did the sleep study since my son's chiari "isn't that bad" yet was enough to cause a syrinx...... Was this exhaustion and weariness worth it? We're my tears at midnight being angry over his chiari worth it? Am I crazy?
We don't fit in any world really..... Most days I'm okay with it. Yet maybe exhaustion is talking here.
I just want to be content. Content with the constant go, go, go we have to do and often appointments alone. I want to be able to not be dragged into the drama of others expecting to not have to be the one to fix it. I want to come home from long appointments to a clean house but it's not. I'm often asked to help or do favors for everyone else yet nothing in return, or at least rare.
I want to be able to go out and have at least people who want to do things with me without expecting stuff in return. I want to be able to go to Dallas and Little Rock knowing I'll have someone I know that I can talk with that understands where I am. Most that I know that go to Dallas don't anywhere near the time we do anyway.... Their journeys are different than mine too. They have worse to face more often. They have their own buddies they coordinate appointments with."

Some days I am ticked but other days I'm exhausted and other days I'm content and honestly, I even at times fight jealousy.......... It varies which bugs me too... Goes along with the journey.... I have gotten better at just being quiet and not posting on social media, especially if I'm having a "bad" moment, yet sometimes words still spill.



It is hard to feel understood, and not alone some days... Truly.....



The next day I was doing better but did come across THIS blog. The POST I read talked about battle fatigue. Talk about a light bulb moment! I personally loved her sanity saving list. I'll be the first to say that writing is MY therapy. As if that was never obvious... :D



I loved these in particular:
"But it is difficult to incorporate rest and relaxation into a lifestyle that is accustomed to caregiver chaos. Even when life settles down for me, still there is a secret soldier that lives just beneath the surface of my cheerful persona. A warrior, ever-ready and alert, instinctively programmed to pounce into action at the slightest hint of an emergency situation, an inevitable consequence of my child's many medical issues.

In response to all of this, a booming voice of doubt inside my head hollers into my soul, questioning whether I have the strength to survive this grueling pace and emotional trauma that accompanies such a life. It is a silent and paralyzing fear that secretly gnaws at my subconscious.

I am not complaining or seeking sympathy. I am painfully aware that our situation could be much worse. I realize there are families who suffer from far greater challenges.

I am thankful every day for our good fortune.

I am also however, only human, and unable at times, to overcome this feeling of helplessness.

I believe I am suffering from a type of Special Needs Battle Fatigue.

Much like a soldier who is no longer able to withstand the sight and sounds of continuous battle, I too am experiencing a type of involuntary paralysis of sorts, a shutting down of the nervous system in response to the constant demand on the fight or flight response."
"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."  http://www.healthline.com/health/guide-dealing-stress-caring-child-special-needs


Than during MOPS today, I got to hear the story of one of the ladies in our church. What a story it was. She was right on this though. Our children show us what we are capable of and that God's timetable is always the best even when we can't understand it at that time. The hope of Heaven is what to remember, not the fears and worries of today. Reminds me of listening to Live on Forever.

I would never have thought 10 years ago, almost two years into marriage that I would be where I am. Yet I know as frustrating as the journey is, I have truly no regrets. I have days where I wonder if I know what the heck I'm doing or if I'm doing right but history has shown me that at least I get answers...... 

I, like many of us deal with storms and rainbows all the time. A "minor" thunderstorm for me could be a hurricane for someone else and vice versa. I think much of that is how we take things in. Yet trying to handle the journey differently is sometimes harder than the journey itself!

"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 ~

Oh so hard....


Yet another favorite song has these lyrics:
"Even though I don't know what Your plan is
I know You make beauty from these ashes....
When all is taken away, don't let my heart be changed
Let me always sing Hallelujah
When I feel afraid, don't let my hope be erased
Let me always sing Hallelujah."


Even though we all face fatigue, as hard as it is, we have to hold HOPE in that. We may feel like we are in the darkest room yet the darker it is, the easier it is to see Light.

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!

Darkness cannot extinguish light!

https://robertnash30.files.wordpress.com/2012/07/light-in-the-dark.jpg?w=300&h=225

I will also hold tight to my own words, which I will close today with. After almost 9 years of being a warrior for my children, I think battle fatigue is expected but also the goal is to maintain peace and sanity within myself and the immediate world around me is a must too. But maybe it really is okay just to have a time to "let it out" but also pick ourselves back up by the seam of our pants and keep walking. Oh but how hard it is also to not be so hard on ourselves! Amen?! 

Yet the journey has it's good sometimes too. HERE where many of us stood united is a prime example. What a ride it is though.....



Momma
by: Carol Andrews
6/2/15

Momma, you don't know you are pregnant with me yet. You will very soon though. I just want you to know that no matter what, God made me and knows my story already. God knew who my parents would be and knew that you and daddy would be strong enough for everything that I would need.

Momma, you should know that the world is going to consider me special needs. I won't be born looking or acting like most others will. There will be trials and issues that I will face that many won't. So few will understand but those that do you will learn to cherish.

Momma, you will have many battles to face to get the care and treatment I need to thrive. God knew all of this before I was created. The love you and daddy share has to stay strong so you two can fight together for me.

Momma, I already know you love me even though you don't know what I am facing yet. God knows though. He wouldn't have given me to you if He didn't already know you could do it.

Momma, today is my birth day. I am being born today. I sense your excitement and nervousness. As I am born, I see your face for the first time as you see mine. I see your tears of joy.

Momma, I know the doctor talked to you today. I see your tears. Please don't cry because of my diagnosis, cry tears of joy because I am your special gem. Don't cry because I will show the world what I can do. Stand proud momma.

Momma, I know the world sent you to Holland instead if Italy but in Holland, there are so many joys to be found. There will be hard days but days of joy too. Don't take what people say about me or you too hard. Most don't understand.

Momma, watch me prove to the world that I shine just like everyone else, only my light that I shine is a little different but it is such a pretty color that stands out. I have a heart of gold.

Momma, so many say that I won't do this or that but watch me. I may not do it like everyone else says I should but watch me. I will stand tall and shine. Will you stand there with me with your heart beaming with pride? Will you cry happy tears instead of tears of sadness?

Momma, don't mourn because I wasn't normal. Mourn for those who refuse to understand and pray for them. Yet momma, focus on those who stand with us. Feel joy for the times where you know you aren't fighting alone.

Momma, there will be seasons where you feel alone and misunderstood. There will be seasons of pain and sadness. There will be seasons of joy and excitement too.

Momma, just remember those seasons over the years will make you stronger and grow more in your faith. Through you momma, I will see what we can do.

Momma, with God, nothing is impossible. I will prove that.

Love, your son/daughter

Blessings!
~Special Momma ~






From Rebekah's blog: I love her posts!

I have sometimes been wildly, despairingly, acutely miserable, 

but through it all I still know quite certainly that just to be alive is a grand thing. 

~ Agatha Christie ~

Echoes

"God whispers to us in our pleasures and shouts to us in our pain."
~ C. S. Lewis ~

I remember one summer as a child being at my grandpas house, standing on the back porch and yelling out toward the lake just to hear my echo. I can only imagine what the neighbors thought! lol Me screaming just to hear echos.

Recently in my Fighting Back with Joy Bible Study book it talked about sacred echos. How God speaks to us. In our minds and our hearts we know when we are being spoken to. Usually in just a few words that repeat over and over again. Sacred echos Margaret calls them.

Yet so often we barely hear those echos and instead we hear the louder ones. The ones that create doubt, anxiety, fear, depression, anger. Joy robbers Margaret calls that.

I have also been meeting with a friend going over a book called Fervent by Priscilla Shirer. I love her! The chapter we went over was about confronting your worries, claiming your calling. Oh my what a chapter that was..... God doesn't live in the past either. Guilt, shame, regret. None of that. Nor should we. One part in the previous chapter said this: "Priscilla, wipe your tears away. That road is behind you now. I have other roads in store for you in the future, roads I've been preparing for you. Just as you've passed this exit of shame, so you now are beyond the pain that accompanied it. I make all things new." Now put your name there.

Strategy 6 really got to me. It started out by saying: "If I were your enemy, I'd magnify your fears, making them appear insurmountable, intimidating you with enough worries until avoiding them becomes your driving motivation. I would use anxiety to cripple you, to paralyze you, leaving you indecisive, clinging to safety and sameness, always on the defensive because of what might happen. When you hear the word faith, all I'd want you to hear is "unnecessary risk""

Ouch...... Reality often isn't it? Maybe not all of that but much of that at times I'd wager.....

My friend also brought up learning curves. I chuckled and said sometimes it's ANGLES. So I made this in light of it.

Fear is one of Satan's primary schemes for crippling God's people. Chronic worry, up at night anxiety, worst-case scenario thinking, becoming the only or most of the probabilities you think about. It's not when we are busy that we are ambushed with darkness, worry, fear, anxiety, etc. it's in the middle of the night. Literally and figuratively. It's when we are in the still quiet of the night, it's when we see the caller ID and know who's calling that we get the fear and dread. It's on the long drives to and from appointments and the hum of the wheels on the road gives your mind time to think and think and magnify even more what is already there or what was said or what the new diagnosis means. All of it.

A favorite "bad mood" song....

"Take It All Away by RED"

You've stripped me down, the layers fall like rain
It's over now, just innocence and instinct still remain
You watched me while I slowly disappeared
I reached for you to save me; you were frozen in your fear
Take it all away [x4]
Circling the pain inside my soul
I reached inside your silence to steal what you won't show
I tried to find the answers in my fears
But what was found is lost again as soon as it appeared
Take it all away [x4]
I'm breaking; I can't do this on my own
Can you hear me screaming out, am I all alone?
You take away [x10]

Also

Epiphany by Staind.

Your words to me just a whisper
Your face is so unclear
I try to pay attention
Your words just disappear

'Cause it's always raining in my head
Forget all the things I should have said

So I speak to you in riddles
'Cause my words get in my way
I smoke the whole thing to my head
And feel it wash away
'Cause I can't take anymore of this
I want to come apart
Or dig myself a little hole
Inside your precious heart

'Cause it's always raining in my head
Forget all the things I should have said

I am nothing more than
A little boy inside
That cries out for attention
Yet I always try to hide
'Cause I talk to you like children
Though I don't know how I feel
But I know I'll do the right thing
If the right thing is revealed

'Cause it's always raining in my head
Forget all the things I should have said

 

The struggle is real..... It's really real....

So where is your root in fear? What feeds yours? I think my main root is fear of not being good enough, and acceptance. For all my life, I have fought so many battles and have won many. Some barely and lost some. Yet if I fail around those who see me, what good am I? What good of a wife, mother, woman does that make me? A failure which therefore a failure equals also to not accepted and worse, an outsider/ostracized.
I think that's the root. Usually when I fail or feel I have, I get angry. Usually at myself.
I do honestly fight myself on being seen as just mediocre at best to those around me too. Goes with the acceptance and being good enough....

I have been bad at this lately..... Thinking this way.... BUT!

"So talk it up, devil. Because as high as you choose to ratchet it up, you are only showing off "the breadth and length and height and depth" (Eph. 3:18) of the love of Christ extended toward me!."
God has not given us a spirit of fear, but of power and of love and of a sound mind! 2 Tim 1:7

"Our God is fearless. And because He is fearless, we can be fearless too. When His presence is with us and going before us, no Red Sea should faze us or give us a pause." ~ Fervent ~

As hard as it is to combat this, we can be victors. We just have to keep our focus. "Poke holes in the darkness till it bleeds light" ~ Margaret Feinberg ~
March forth with joy and peace that God gives. Celebrate little things, Give joy to get joy.

Walk on. Have faith. FEAR NOT!

I shall replace that song with this instead.

Just be held.

Accept + Adapt + Depend = STRENGTH

I must accept that my children have struggles that others don't. I must accept my own shortcomings. I must accept that life is what it is. I must accept that I can and HAVE found the good in the bad.

"We Christians are the speakers of light. We are the proclaimers of joy. Wherever we go, we are the mascots of the gospel, the imagers of the infinitely creative Father, and the younger brothers and sisters of the humbled and triumphant Word. We speak in this world on behalf of the One who made up lightning and snowflakes and eggs." ~ N. D Wilson ~

Thanks to a craft we did last night in Bible Study talking about JOY, I think I know what I'm going to do before I go to Dallas with my son. IF we get a room at the Ronald McDonald House, I hope every family there can get this. I hope that as I feel the abyss trying to surround me of the unknowns and fears as I await his MRI, I can sit at Children's Medical Center that day and find joy. I can spread joy. I pray that no matter how good or bad his MRI is, I can hold my head high and feel peace.... Hear God's sacred echos...

We can't stay around in mourning over what could've, should've, would've..... We can't share the light doing that..... Fight back with joy. Smile among the tears, find something to laugh at admist the sobs. As you see the dark storm coming toward you, turn the lighthouse on and be the light in the storm.

May I be better in the coming days at being a light in the storm instead of letting the storm beat me around amongst the waves and wind....

"March on, my soul; be strong!" Judges 5:21
Be strong indeed.....

Hope is a vital part of this journey. It is what helps you get up in the morning, move forward. Without hope, you can't hand your baby over to the paramedics, the surgeon, the nurse. Hope is why you do therapies, medications, appointments.
I think all life really is is one big cha-cha. Even you don't have the energy to keep on dancing steps forward and backward, one has no choice if they refuse to give up. Life may be a cha-cha but I sure wish calories were burned during this dance.... I would quickly be the jeans size I was in high school! Amen?

Blessings!
~Special Momma ~

Don't Quit

Don't Quit

~ Pam Fraser ~

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit-
Rest if you must, but don't you quit.

Life is erratic with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow -
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor's cup;
And he learned too late when the night came down,
How close he was to the golden crown.

Success is failure turned inside out -
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when you're hardest hit -
It's when things seem worst that you mustn't quit.

-------------------------------------------------------------

Recently we had a thick fog for the entire morning. It was pretty yet not. The sunrise through it was something that no pic would have done it justice. I was thinking though while driving that thankfully I knew where I was going because you couldn't even see a quarter mile ahead. The sun fighting to peek through the clouds was a sight too. I just wish my phone had caught it better. It was really pretty.

Yet the journey has even thicker fog than that often. Sometimes we can't even see the hand in our face, it's that thick...... The journey is sometimes like a doggone piece of warhead candy as well! I hate those things!

Yet as a friend reminded me, you have to get through the extreme sour to get to the sweet.

"Being alone, feeling alone, that's one of the most devastating parts of a diagnosis, knowing that no matter how hard they try, most people around you really can't understand. And then you find there's a whole bunch of folks out there who are dealing with the same issues. Plus, with our kiddos, there's always someone awake, 24/7, to chime in.  Support is priceless."
Rebekah Peterson (Trisomy 18, Aaron) (I about spelled her name wrong!)

The power of social media.... Yet as in my last post on here that has had over 700 views since I posted it on the 3rd pointed out, it has it's bad. Yet look at the army that has stood behind Jameson. Just the meme I made has had over 400 direct shares from my wall. Others downloaded it, websites have used it to share his story, and it has gone all over Twitter. We all have an army with us, even if we can't see them. No telling how far and wide it is. An army that fights back. We should not have to hide our stories that we know help others just because. Blaming the parent for trolls is like blaming the gun for a murder. It's not the gun's fault, it's the fault of the ones choosing to act horribly.

Through it all, The Bible reminds us to have faith of a mustard seed. Matthew 17:20, "Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible.""

Yes this is an actual mustard seed. That tiny brown dot.

Let me tell you though, that is not always easy to remember... It is so easy to get caught up in what the future holds or the "whys" "whens" "wheres" "whos" and so much more... Yet all we need is a mustard seed and God will do big things! Something so small does something so big.

Ten minutes last week is all it took for me to make a meme. 20 minutes to write a blog post. Yet look where it went.

How will you impact the world? What is your mustard seed?
How will you take your bitter warhead, and wait till it becomes sweet? I'll take mine with chocolate and caffeine please! I'll try to not grimace too much in the sourness!

I'll just end today with this:

Amen? Amen!!

Blessings!
~ Special Momma ~

See us roar!

"Life is the right of every child. Not a special privilege for the fortunate, the planned and the perfect." Rebekah Peterson

I made my own meme of this little boy with his mommas permission. His story has made it to many pages, including GMA! This meme has had almost 300 shares since 6:30 last night!

This kind of thing happens too often. On a slightly different line, a majority of the pictures of people who are ill (especially children) that encourage you to like/share/say amen to are pictures that have been stolen from a genuine person, who is probably totally unaware that their picture is being used. Jameson didn't do anything to deserve this. There's more on the inside that just what you see and everyone is beautiful in their own way.

This pic is a little old but it went "viral" not long ago with a nasty meme comparing him to looking like a dog. So, with his mom's permission, I made my own meme and I hope it goes much farther than the mean one did. It had over 5000 shares. I would love mine to go even farther. United voices are much louder.

http://www.facebook.com/andrews.cw/posts/10206827503379646

Click on the above link, it will take you to my profile page where you can share the pic and get our voices heard! No, I cannot accept a ton of friend requests but I do accept followers. This link also will share our story.

Jameson and so many other kids don't deserve to be treated badly. God created these gems, so who are we to call HIS gems ugly? Who are we to tell a parent they can't have more kids because of a risk of facial defects? Are they really DEFECTS? I don't think so. Yeah, doctors are required. Surgeries are required yet how we all look is what makes each and every one of us unique. Instead of telling shining gems they are ugly or they should have been aborted or whatever else, why don't we instead help them shine? Polish them so they shine even brighter. It is those with "special needs" who are the rarest of gems and who are often the gentlest of souls that has not allowed the world to harden them.

We need more of that!!!


The stories don't always end well, as I have seen and followed many over the years yet most will tell you that they don't regret their journeys. I don't regret mine. I may have a few more wrinkles for mine but so be it. My gems are totally worth every one of them. And personally, most who meet them would say the same. And for those that don't agree with that, maybe our gems in this world will eventually soften their hearts so they can really see.

Blaming the parent for trolls is like blaming the gun for a murder. It's not the gun's fault, it's the fault of the ones choosing to act horribly. In Jameson's case, his momma was trying to share his story to bring about awareness and his picture was horribly used.


Here is what I made for my kids. I fight back with this and I stand with Jameson with it. I won the lottery with my kids. A rare syndrome and both have. And my son has even more rare things. Rare, shining gems indeed! 

Our kids are rare. Rare gems that don't deserve to be abused in ANY way, by ANY one. Gems deserve to be treated well and to SHINE.

Go out there and shine your Light children. God created you so let your light SHINE! Shine even in the storm when the world is pounding on you.
"Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven." Matthew 5:16

Blessings!
~ Special Momma ~

What is that big word? What a ride......

George Mueller – “To learn strong faith is to endure great trials. I have learned my faith by standing firm amid severe testings.”

Edith Edman – “Never doubt in the dark what God has shown you in the light.”  


 "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."

This post took me all day to write..... Thanks also to distractions and also memory lane being what it is.......

The day my world really changed all over again was June 8th, 2007. Apert Syndrome was brought up. What the heck? Our pediatrician at the time for my daughter who was just barely two months old, wanted us seen at Arkansas Children's. Thus began our journey...... I got a call soon after saying it would be six months. Nope, not doing that. Not waiting six months, not after being on Google. I found the name of a surgeon in Dallas. Thus that began.... July 9th, 2007 was the first time I ever had been in Texas, let alone Dallas. Good Lord, talk about white knuckled driving!!! LOL
"Bicoronal Craniosynostosis with either Muenke or Crouzon syndrome." Wait, what? How do I even pronounce CRANIOSYNOSTOSIS??? (pronounced crane-eo-sin-os-TOW-sis)

Drove home the same day (big mistake given how cranky little miss was!) with my brain spinning....

Time to plan an MRI of her brain, surgery, insurance battles, Oh God, what about finances as I can't go back to work now.....

Well, long story short, she had her first surgery in February, 2008. Scariest day of my life since being a parent...... First time staying at the Ronald McDonald House in Dallas (One of two times we were in the old house and countless so far in the new.) The night before surgery I hardly slept. My gut hated me thanks to the stress and it was just awful...... Little did we know then..... Over time other diagnoses were added to the list yet the more vibrant, happy and strong willed she got. Even now, she hates it when we have to leave Dallas. So many stories of good and bad down there.... We even went viral with Build-a-Bear.

What's even more nuts, she would rather brain surgery over dilation eye drops. Yeah..... lol

It has been no easy journey. Before I even thought about having another baby, I had been told not to have more, it would be cruel of me to do that, etc.

I triumphed anyway.

God had other plans.

February 17th, 2013, I found out I was pregnant.  I had some spotting with this pregnancy just like I did with my daughter. I tried to not fret, as before. My daughter was going to see P.O.D again (First time was with her wish in May, 2012.) and I wanted to enjoy that too. She still talks about P.O.D and Sonny (one on the right) so often! :-) 

My world crashed March 19th, 2013 during my first ultrasound. Days after seeing P.O.D again. Utter silence and stillness on the ultrasound..... My baby had died two weeks before. One of the things said to me that stuck out that day wasn't the "I'm so sorry" that so many said, (Thank you) but the "Maybe the Muenke was just too much for this one."

Yeah...... I did find out later what I believe the cause was and craniofacial had nothing to do with it. It was really an odd thing actually I had never heard of before. Even the craniofacial surgeon said Muenke would not have caused my baby's death.....

That day, of my confirmed loss, I put this text onto a pic I had taken a few weeks before.

The silence in the room during my ultrasound even now hits me. Cori would have been just over two now. Boy? Girl? Two songs were stuck in my head for a while after this. Especially Hold Me Now by RED.

The pic above I found soon after my D&C..... For weeks I struggled thinking that yeah, my baby had no heartbeat but I aborted it..... My body rejected life in me. I was being punished..... BUT!

10 days later we took my daughter to the park where I experienced this:

"During that time I went alone for a few to my favorite overlook. I wanted to gather thoughts. During that time I was asking God to allow me to see some Daffodils as a sign that Cori was with Him in His arms. My heart knows that but the head needs a reminder sometimes..... While there I saw daffodils that were not in bloom yet. Many of them. On the way home, everywhere I looked, every yard had them bloomed. God is good. I wonder why at first though I saw unbloomed ones then as we were going home I saw bloomed ones. A thought someone shared with me. about the daffodils was this: "Makes me think of a baby here, not very mature, just a unformed bloom. And when they are taken early, when they are in the Masters arms, they become in full bloom! Complete in Jesus! There to wait for you, their parents, loving you till that day comes. Just thoughts that went through my mind for you. God bless you!"

I never thought of it like that..... btw, daffodil is the March birth flower. That's why I asked for daffodils."

 
You never said you're leaving
You never said goodbye
You were gone before I knew it,
And only God knew why.
A million times I needed you,
A million times I cried.
If love alone could have saved you,
You never would have died.
In life I loved you dearly
In death I love you still
In my heart you hold a place,
That nobody could ever fill.
It broke my heart to lose you,
But you didn't go alone
For part of me went with you,
The day God took you home.
~Unknown

I didn't give up. I knew I was not alone.......

On Cori's due date, I found out I was pregnant with my son! My rainbow in the storm.....

My rainbow, my FROGGIE. Forever Rely On God, Grace In Everything.

November 19th, 2013 I saw my son's heartbeat for the first time. I bawled. Nothing else mattered except that God blessed me with another life.

Then the fears seeped their ugly faces in...... What if I miscarried this one? What if we have craniofacial or worse? How do we afford that if so? Yet on the flip side, I was so glad I could carry another baby again...... A part of me cared where the medical journey might go but yet I was more thankful that I was just pregnant with a chance at carrying to term.....

The day of his arrival came.

Even now I look at pics of him as a tiny baby and beam with pride. (I do with my daughter too)

And don't ever mess with him. lol (A week old here)

By the next morning, we had confirmation about our craniofacial journey with him...... Deja vu anyone? Talking to Dallas again to start again anyone? This time I was a veteran so it would be easier right? Little did I know.....

Much more talk this time from some family and 'friends' about how I now have two "different" children and I had better never roll the dice again and how there is another "Muenke" child in the family and things like that..... What, so if there were any more "special" children from me, you wouldn't love them? Your loss......

I bawled... Not only for my pain from my cesarean (Thanks to my son being breech, "butthole baby" as my OB humerously put it. lol) but the feelings of rejection from people who just wanted to judge my son and all the while my hormones went crazy....

Within a matter of a few days, my world crashed but what replaced it was crazier than I could have imagined. It was a whole new world, yet again but one of where my children learned to lean and love on each other, each not knowing what the future held but one of which knowing they have a shared bond, beyond being siblings, they know and will know what this journey is like.

March of 2015 and especially October of 2015, parts crashed again, with new diagnoses for my son, those of which my daughter has not faced. Those "hidden monsters" that in time, I don't know what they will do to my son but they will not MAKE my son. Just like a diagnosis does not MAKE my daughter.

I think that's what so many don't realize till they are a special needs parent or work with those with special needs. They see the disease and say "That's the child with Down Syndrome." No, my child has a name, Jane and she has Down Syndrome but that does not DEFINE her.

Muenke, Delays, Craniosynostosis, Asthma, Hearing Impairment, ADHD, Brain issues, Chiari, Basilar invagination, Syrinx, etc, does NOT define my children.

Even now, I honestly fear the idea of more children, mostly thanks to fear of judgment..... however, whatever GOD decides, will be.

So be it..... If eventually a 4th baby happens, and that one is "special needs" too, then so be it.....

What defines my children is this: WHO they are. Their personality, faith, HOPE, love. Their inner being. No matter how God created our children, HE is the ultimate creator and it is our job to unwrap the gifts we have, these gems and let them shine.

Keep track of your Mile Markers. Where are you in your journey at different miles? Look back on those markers to see how far you have come and the good and bad of each one. That is what makes us warriors, veterans.

We are warriors for God but also for our children.

I hit the lottery with my babies..... Did I?

Parents, go out there and enjoy watching your children shine light to this dark world, no matter their diagnosis. You never know when an opportunity will arise... This day in the PICU was just one. This still brings tears to my eyes as I couldn't tell it without them last night....

"GOD?... OH GOD?, called the quality control angel. We’ve got an issue here, a quality issue”.
“What’s the problem?” asked God, in a voice that already seemed to calm the concern.
“It looks like a defect, a craniofacial one”
Now smiling, God answered, “That’s not a quality concern…it is…a distinction…the Manual addresses it. You’re new on the line, aren’t you?”
“Why yes…this is my first day,” apologized the angel, searching through the manual for any reference to this.
“I’ll talk you through it...there are just a few assembly modifications.
First, locate the hug sensors. Do you see the dial?”
“Yes, right here…oh, I think I tickled him.”
“Turn it up.”
“How much?”
“All the way.”
“Done.”
“Now locate the two smile triggers, they are located on either side of that cute little button nose.”
“I found them.”
“Adjust them a little closer to the surface…closer…closer…perfect!”
“Is that it?” asked the obedient angel.
“Almost,” answered God. "Now, very gently, open his heart. That’s it. Measure two…no, make it three extra scoops of love.”
“Will it fit…it’s so tiny?”
“Oh, these little hearts stretch incredibly. It will fit.”
“Done…is that it?”
“One more thing…move him from the random distribution belt to the select premium belt. These little ones aren’t just given to anyone."
"There…he's done and ready to go,” announced the angel.
God stepped over, as if to inspect the handiwork of this new angel on the line. But that wasn’t His intent. Instead, He picked up this little one and held him close to His heart…holding him for so long the angel became concerned.
“Is he alright? Did I do everything as you instructed?”
Still holding him close, God said, “He’s perfect. I just find it hard to let these special ones go, for they are Heaven to hold.”
And then He gently kissed the sweet cranio-babe's cheek and sent him to our lives and hearts."
I tagged a lot of people that we have come into contact with or they have touched our lives in some way..... Thank you.

A Down Syndrome Poem, modified to make it a cranio poem

Thank you Celeste for this!!


God's word says that when a child is conceived, God is present,forming the life of that child.
~ Roy Lessin ~

Don't live with regrets with your special and rare gems moms and dads. Cherish them, polish them and let the glorifying Light shine through them. The rays of light from our gems will shine toward anyone willing to cherish our gems for just what they are. Rare, valuable gems.

 I really did hit the lottery with my shining gems! Indeed I did!!

 

~ Special Momma ~