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 ~