An Anniversary

It was October 26, 2007, on a breezy Friday afternoon that Julia was diagnosed with spina bifida during an ultrasound appointment. I remember vividly the way the doctor described what my child's life would be like in heart breaking detail.

She wouldn't walk, she would face a life of surgeries and pain, she had signs of hydrocephalus and would most likely never have bowel and bladder function. He showed us the "defects" on the blurry screen and said words like lemon sign, banana shaped cerebellum, large opening on her spine, water on her brain, Chiari malformation...

He said he thought we should consider terminating the pregnancy.

I will carry the heartbreak of that day with me for the rest of my life. Today is the anniversary.

I wish he would have told me, "Your baby has some medical issues and will need a surgery, maybe more than one, but everything will be okay. She will be beautiful and strong and courageous." I wish he would have said "Congratulations, you're having another little girl!"

I wish October 26, 2007, would have been different.

I wish I would have known what the future would really look like...

Dance classes

Playing in the sprinklers

Running in the sand

Running circles around her doctors

Sisterly Love


I wish he would have said, "There will be some tough days, but the good ones will far out number the bad."


I wish I would have known then what I know now. Julia is perfect. She is beautiful, strong and fearless. I am the luckiest mommy in the world that she is mine. Everything will be okay.

Faces of Spina Bifida

This is what one SB mommy wrote about Spina Bifida in recognition of Spina Bifida Awareness Month. I thought is was beautifully written. Her name is Joanna and her son is Jet.



"I was one of those people who had never heard of Spina Bifida - until it came into my life like a sudden crashing wave. Surely there are others out there like me - but almost every time I tell someone "he was born with Spina Bifida" - and I'm all prepared with my gracious "it's okay if you've never heard of it" - they have heard of it - or at least they pretend to - and I think then why hadn't I?? It didn't really matter. I learned fast. Because when you're told your sweet unborn baby boy has a birth defect that will negatively impact his ability to eat, walk, talk, think, breathe, and virtually every area of his life - you want to know why. That is - after you tell the doctors you are not interested in terminating your pregnancy. Which they will encourage you to do - and every word they say will rip your heart out and replace it with fear and hopelessness. But once you make it through that, you realize it has prepared you for protection. Because you will spend the rest of your life protecting your baby from those who don't understand, those who don't care, and those who don't believe. So you begin. You start to read about Spina Bifida - it stabs at your heart with a pain like no other - with each fear, each unknown, each possibility of hardship your family will face. You panic, you pray, you research, you fall apart, you start again, you wait. And then your baby is born. You cry not only the tears of a mother who is finally seeing the angel she loves - but tears of worry, relief, and anticipation as you realize your journey is ending and beginning at the same time. The waiting is over in some ways - and yet you will never stop waiting on answers...treatments...insurance companies...doctors...test results...milestones. You realize that waiting is part of the game. Yet you know that even though waiting his hard - you'd wait for your baby all over again. Because in their eyes...their smile...their hugs...their breath...lies all the strength, joy, peace, and hope you'll ever need - while you wait. I was once one of those people who had never heard of Spina Bifida - I didn't know what it was - what it looked like - what it meant. But now I know. It's the face of my precious little boy - it looks like laughter mixed with tears and surrounded by love - and it means thanking God for His blessings, finding peace in His power, and begging Him for continued strength. Because living with SB isn't easy - but loving someone with it...is the easiest thing I have ever done."


- Joanna - Jet's Mommy.
www.babyboypenny.blogspot.com

Letting Go...

Ten days… I finally counted them today. In ten days I will drop Julia off for her first day of school. Four years ago I dropped Gracie off for her first day of school and two short years ago I sent Maggie on her way to her first day. I remember being filled with nervous excitement as I sent them off to begin their school careers. I shed tears that were a mixture of pride and sadness for babyhood gone too fast. But, I was ready to send them to school. They were ready to go to school.

This time is so, so different. Julia is ready to go to school. In fact, she can’t wait. I am not ready to send her. I am terrified. I am used to having her with me. I am used to being in control of her well being. I am used to protecting her. I have had the privilege of taking her to work with me since she was born. It’s the only reason I have been able to continue working, she has never been more than a 30 second walk from my classroom door.

In ten days I will drop her off at her pre-school and drive twenty minutes to my school. I will leave her in the care of teachers and a nurse that I hardly know for more than eight hours. I will trust them to catheterize her, give her medicine, check her braces, keep her away from nuts and latex, monitor her for signs of shunt malfunction and keep her safe from falling, especially on the playground.

In ten days I will drop off my happy, beautiful, sweet, extraordinary girl to school, where kids can be mean and hurtful. That scares me beyond words. We have spent her whole life telling her how amazing, brave and special she is. I can’t stand the thought of sending her into the world and having the words and actions of others make her question her self-worth.

I have done a lot of things that I didn’t want to do, that required courage I didn’t know I had since Julia was born. This is going to be one of those times. I hope I can find the strength to drop her off and drive away on August 22nd because I know that it’s the right thing to do even if it’s scary as hell.

One Year Ago

Julia started walking...
and we will always remember...
because it was a really big deal, and we were so very proud!

Welcome To Holland

WELCOME TO HOLLAND

by
Emily 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.

The Follow-Up

The appointment was short and sweet. We were in and out of Scottish Rite in an hour yesterday, which must be some kind of record. The patient, however, was anything but sweet.

Julia made yesterday's hour long visit to Scottish Rite seem like one of our longest. She was terrible, really terrible!

In her defense I think this was her ninth medical appointment in about a month. She has had a MRI,allergy skin testing, blood work twice, a renal ultra sound, booster shots... not to mention visits to five of her doctors for check-ups in the last several weeks. Apparently, she decided that going to the doctor yesterday wasn't really on her to-do list so she wasn't going to make it easy on anybody.

She is always so charming and so brave at her appointments. I didn't know what to do with her yesterday. She was flopping around on the floor, refusing to answer questions nor allowing anyone to touch her.

I had to hold her down so the nurse could take her blood pressure while she yelped "you are hurting me!" Then, the only thing she said to her Urologist, who couldn't be nicer and more friendly, was "I don't like you."

The good news is that her renal ultrasound showed that Julia's kidneys and bladder are healthy and growing as they should be. Big sigh of relief. Dr. Gargollo wants us to try taking her off of her daily antibiotic and see if she can be infection free without it. He is worried she will develop an antibiotic resistant bug if she stays on daily antibiotics. That is very scary to think about, but so is the thought of her getting a kidney infection. When she gets a UTI, she gets so very sick. Today is her first day off of antibiotics so fingers crossed and lots of prayers that she will be okay.

After we saw Dr. Gargollo, I had the pleasure of taking the little monster to orthotics to be casted for a new brace for her left foot. The physical therapist and orthotist who saw her in clinic last week felt like some adjustments to her AFO might keep her from falling down so much. Maybe it will help her dance moves as well!

I was pleased that she didn't tell her orthotist that she didn't like him. She did, however, cry about how painful being casted was the entire time. "It hurts mommy; he's hurting me." She has been casted a bunch of times. Nothing about being casted is painful, at all! It wouldn't hurt even if she could feel her feet. She could have won an Oscar for the drama she displayed yesterday afternoon.

I have never been so glad to get out of Scottish Rite Hospital. I have to take her back on May 6th to get her new brace. Hopefully, she will have a better attitude by then.

It's just one more thing...

Peanut butter and jelly sandwiches are off the menu at the Kennedy house. You won't find any Reese's Peanut Butter Cups, Snickers or Peanut M&Ms either. Julia is officially, confirmed by skin and blood test, allergic to peanuts, as well as pecans and walnuts.

I suspected she might have a peanut allergy a year ago when she got a mild rash the first time she tried peanut butter. Since then I have avoided giving her anything that contained nuts. That was until recently when Wade decided to "challenge" her peanut allergy with a PB&J while I was away from the house. One bite into the sandwich her face broke out in hives, her lips swelled up and Wade finally believed me that "we don't give Julia peanut butter."

While Julia has only had swelling and hives with previous exposure, her allergy doctor made it clear that every reaction to exposure can be different. We have to keep an Epi-pen with her at all times and be prepared for an anaphylaxis emergency.

It was clear this past Easter weekend how difficult it will be to keep Julia safe when we are away from home. It seemed like every other Easter Egg she opened had peanut butter candy in it. What is yummy for most kids is poison for Julia. I had to snatch most of her Easter candy away from her as soon as she got an egg opened. Thank goodness she was a good sport about it. The scene could have gone so differently if she had been in a different mood.

Julia's nut allergy is just one more scary medical issue. One more potentially life-threatening, how am I ever going to keep her safe when she is out of my sight, medical issue. It's just one more thing.

Clinic Visit 4/21/11

Spring Break 2011

Courage

"That was fun, Mommy," Julia said as the technician un-swaddled her and I helped her down from the cold, hard MRI table.

I had been dreading this MRI for weeks, worried about how her shunt was functioning and about how she would react to the test.

Typically she is reluctant to lay down on the sterile metal table, but not this time. She was happy as a clam.

The MRI technician explained to Julia that she was going to wrap her up nice and tight so that she could not move and then take some pictures of her head. Julia happily nodded her head and giggled. Then, she put some headphones on Julia's ears to block the noise and foam padding around her head so that it was immobile. Still, Julia was smiling. I leaned over her and told her that I would be right beside her and she tried to shake her head, but she couldn't move.

Then, they slid her into the MRI tunnel and the banging and clanking noises proceeded. I was still anxiously awaiting the silent tears and quivering lips that have accompanied every other CT or MRI, but they never materialized.

I am relieved that Julia is no longer scared to have an MRI or CT. They are part of life for her. I am sad that she has had so many in her three short years that they are common place, fun...

Hospitals and medical procedures and tests are not supposed to be fun. They have been so much a part of Julia's life that they are her normal. She asks routinely "Am I going to the doctor today?" and she says it with such enthusiasm!

I am grateful to the doctors, nurses and staff who have cared for Julia at Children's Medical Center and Scottish Rite Hospital. The gifts, lollipops, stickers and attention that they lavish upon her have made trips to the doctor not so scary. In fact, check-ups are down right fun. Her favorite part is when she gets to have a sparkly band-aide to wear home and show off to her sisters.

I will always be nervous about the outcome of Julia's medical tests and procedures. At least now I don't have to worry about her fear and anxiety, because she is so very brave.

Julia is Three!

and she can run in the sand...
and dance like a ballerina...

Untitled from talononline on Vimeo.

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