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! :-)
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.
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.
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)
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 ~
