Holland Moms

At the new church I attended this past Sunday I snagged a book with a list of different groups who meet outside of church. I came across a group called, "Holland Moms" and immediately knew what kind of group this was. Some of you might have already read this, but for those who have not please read this poem.

WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This group is filled with women just like myself who were expecting to go on that trip to Italy but ended up in Holland.

I was a little unsure about going since it was at a restaurant but sometimes you have to just take that leap of faith and do things that are outside your comfort zone. Well I'm so glad I did because I had the best time. We stayed for 2 1/2 hours and the time literally flew by. They meet once a month for dinner to talk about whatever is going on in your life. We talked about feedings, surgeries, doctors, therapy, respite care, you name it. My favorite thing about this group of women is they are all Chrisitian women. I am already excited to go again next month! :) Plus, getting out of the house for some me time felt SO GOOD!

Another heart mom posted this and I had to post it

Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't carewhat sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips,button nose, beautiful eyes and satin skin.

She wants a baby so gorgeous that people will pity the Gerber babyfor being flat-out ugly.

She wants a baby that will roll over, sit up and take those firststeps right on schedule (according to the baby development chart on page 57,column two).

Every mother wants a baby that can see, hear, run, jump and fireneurons by the billions.

She wants a kid that can smack the ball out of the park and do toepoints that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn'tclose.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe itwill be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeperto a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionallyquestioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things inperspective, so let me do it for you.

From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding ontothe delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July,counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Upand No Place To Go

Heart Buddies

Arianna & Kira

TOF buddies!

I can't tell you how good it felt to hold a baby again. But....I am definitly not ready for another one. I've been having the baby fever lately and after our playdate I decided neither I or Arianna are ready for that. However, it was so nice to sit down with another heart mom and just talk. Someone who truly knows what it feels like to have a heart baby and the every day fears that come along with it.

Speaking of fears....I had the worst experience this morning. I was sleeping peacefully when Robert wakes me up and tells me to check on Arianna cause he doesn't hear her breathing. I panic...shake her twice.....she doesn't move....I immediatly start crying because I think she is dead...Robert sits up....shakes her once and nothing...finally again...and she stirs.

There has been so many heart babies (and non-heart babies) that have passed away recently that I've been a little on edge lately. The slightest things brings me to tears. So this morning was just a little too much for me. I finally fell asleep after Robert calmed me down, but I NEVER want to be woke up like that again.

Something I posted along time ago on Arianna's CaringBridge page but I thought after this mornings experience I would post it again. Most of you have read it but for those who haven't...this gives you a look into our world.

What does it mean to be the parent of a child with a heart defect?

It means going into your baby’s room a dozen times a night just to check and see if he is breathing.

It means standing over the crib and watching for the chest to rise and fall and when you don’t see it move you begin to panic and put your head down close to the baby’s face to try to hear him breathe.

It means that when you don’t see the chest move and you don’t hear the breathing (because your own heart’s beating is drowning out any other sound in the room) you put your finger under the baby’s nose to feel the warm air on your finger - until you wake the baby and he stirs - and you’re thankful so thankful that he’s still with you.

It means waking up with a start every morning, jumping out of bed and running to your baby’s room wondering why he isn’t crying yet?

It means feeling a huge sense of relief when he hears you and opens his eyes and smiles.

It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out. How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating.

It means checking his nailbeds against your own to determine how blue he is today.

It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

It means snuggling him in an extra blanket for fear he won’t be warm enough.

It means worrying that even a sniffle could cause an infection that would harm the heart.

It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby’s name and takes you straight back to the examination room.

It means knowing that everyday is a blessing and a gift.

It means knowing that you are the luckiest person in the world just to be a parent.

It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby’s life.

It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief.

It means your own heart knows a pain no parent should know.

It means feeling weak and helpless and angry and depressed because your child’s fate is out of your hands.

It means feeling strong and determined and brave because you know you have to be.

It means your love knows new unlimited boundaries.

It means your pride in your child’s accomplishments is unparalleled.

It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.

It means we are united by the same feelings.

It means that we all know the mixed up emotions of living with death-but more importantly of living with Life.

It means that even though we are strangers … we are more to each other than friends could ever be.

By Anna Marie Jaworski (1996)

Writing down my thoughts

I wasn't going to post this but I decided to anyways. I have never written a poem before but the other night I was up working on support group stuff and this is what transpired.

Recovery
By: Vanessa West

I remember the moment my life stood still,

when the sound of a heart beat was all I could hear.

Not knowing when, how, or why,

but trusting in my faith to get me by.

One day at a time

was all I could do,

Just watching, waiting, not knowing what to do.

You wish you could trade the place with your child,

just so you could see that precious little smile.

“The days will be rough”, one heart mom told me,

but how am I suppose to let this all be.

The day finally comes and there’s no place to hide,

I have to give over this precious little child.

The hours drag on as you wait for some news,

just to know your baby will be with you soon.

The wait is over and all you can see,

is your precious little baby as pink as can be.

I remember the day one heart mom told me,

“You’ve made it across to r-e-c-o-v-e-r-y!!!”