October 29, 2010

Someone got a hair cut

Last Friday night (10-22) we went over to my Dad and Alex's house for dinner and an overdue first haircut for Annabelle. Somehow our sweet girls bangs had gotten super long. It wasn't really a problem when she would leave her cute little hair bows in, but since she never did, well her hair was always in her eyes.

She was all ready to get started

In typical Annabelle style she was a VERY good girl.

Oh no, where did our baby go?
She has been replaced with this (adorable) big girl!


October 20, 2010

Perfect Imperfection

Painting by: Sarah Stevens (found on Flicker)

This past July our family had the great privilege of meeting up with several SB Moms and miracles. It was so awesome to finally meet in person (and hug!) these families I felt like I already knew so well. These are moms that have been there encouraging and supporting me since I was pregnant with Annabelle. These are moms who regularly share in my joys and disappointments. These are moms who are also walking this amazing journey and have become some of my very dearest friends.

Sarah, mom to Katie, who is another local SB mom was kind enough to host the barbecue. We had such a blast just being together, sharing stories, looking at each of our kids back scar and just marveling at their progress. It was a night I know I will never forget. Not only do we have our memories and awesome pictures from the night but we also each have a beautiful handcrafted necklace given to us by Karen, mom to Carson (pictured below last on the right).

Here we are posing with our new SB perfect imperfection necklaces

Joanna, Me, Sarah, Leigh and Karen

This beautiful description was included with each necklace.

Perfect Imperfection
The necklace is long, worn so that it may center down to where we carried our precious children, our bumps. The place where so many times unconsciously our hand would tenderly fall as we would silently breathe a prayer for the precious life we carried.
Yellow is the dominant color. The color yellow represents Spina Bifida awareness. The color yellow is cheerful, optimistic and an attention getter. Our children reflect this color with their optimistic, happy, captivating smiles.
Red is the complimenting color, representing us mommies. Red is the most emotionally intense color; red stimulates a faster heartbeat and breathing. It is also the color of love. As a mom we are the most emotionally attached person to our child, and so often this attachment has stimulated in us a faster heartbeat and quicker breathing remember the day you found out you were pregnant, and also the day your child was born. In the course of having a child with SB a quicker heartbeat seems to be our new way of life. But this is all a testament of our love for our children.

And finally, as the focal point, there is a bead which stands out. To the untrained eye this may appear as imperfect, as if it doesn’t belong with the necklace, as if it removes some beauty from it. But, we know this is not the case. We know that this bead speaks straight to our heart and this bead is the most beautiful of all. You see, we were once told crushing words “You’re child will be imperfect” and we have had the privilege to see how perfect their imperfection has become.

If you would like to see more great photo's from this wonderful afternoon please check out the following blog post. Both ladies really captured the beauty of the day.

Joanna's pictures

Sarah's pictures

Here are my pictures:

I love the pictures of our boys with Katie. They got along so well and really had fun playing together. They were SO excited when they found out that she had Spina Bifida and a shunt just like their baby sister. I love that they weren't intimidated by her braces and that she had so much fun playing hide and go seek and chase with them. She didn't slow down a bit! She kept right up with my two little wild men - and that's hard to do! She and Jack even had a bit of a crush starting until Katie's grandma and I stepped in to cool things off a bit :-) It was a special night for all of us.

Today's prayer was

and SO much more

A heart felt thank you to all who prayed today for the unborn and born that are affected by Spina Bifida. More than 3,000 people, probably a lot more when you factor in prayer groups and those who aren't on FaceBook, took time today to really focus on Spina Bifida. I truly felt a strong sense of unity and love. It felt so very good to get on my knees and talk with the Lord about what has been on my mind and heart lately.

I 100% believe that miracles happened today - somewhere, somehow our prayers worked as intended. It may not have changed the fate for the one family who so needed our prayers today but I am confident that our prayers we heard and felt across the country. Thank you for joining me in this amazing effort to raise awareness and pull from God's amazing grace.

I will continue to share on my blog what life is like raising a child with Spina Bifida in an effort to REDEFINE Spina Bifida - just a hint, it's nothing short of wonderful!!! I LOVE my life and I LOVE my daughter who is fun, playful, happy, beautiful, silly, and so many other things and happens to have Spina Bifida.

October 18, 2010

Spina Bifida Kids Worldwide Day of Prayer

WHEN: Wednesday, October 20, 2010
WHERE: Wherever you are
TIME: 9 am PST (10 am CST / 12 pm EST)

As most of you know, October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

We will begin at 9am PST (noon EST). Pray for as long as you feel moved. Pray individually or pray as a group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:

1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

I assure she is not suffering! This little girl loves life and we love her!

October 15, 2010

24 weeks

WHY in the world is it legal to terminate your pregnancy in some states up to 24 week? I'm sorry but this is just horrible and completely breaking my heart tonight. I recently came across the blog of a woman who is 19 weeks pregnant with a child who has Spina Bifida and she is seriously contemplating termination. I understand she is scared, I understand she is worried how this baby's condition will affect her other children - I UNDERSTAND. However, the thought that we can just get rid of our babies because the doctor tells us they aren't perfect is just heartbreaking.

Although, I have always been pro-life personally, I have never felt it was my place to tell another person what they should do with their bodies. I think this situation hurts so much more because what she is saying is that she would chose not to have Annabelle or any of our new friends with SB to be her child. I just don't understand especially because she openly admits that she has read all our blogs, seen and heard our stories but still thinks possibly this baby would be better off not being born. I just don't get that at all. She also already has 2 other children so she knows the joy that children bring. My friends and I have reminded her that our children are much more than their disability. Our children are as much of a blessing as any other child. I reminded her that sadly ANY child could be diagnosed with a disease or illness at any point in their life and most parents wouldn't stop loving or parenting them. You just love your children unconditionally and you work it out. You find a way to be better because of it.

She actually created a poll asking peoples opinion if she should have the baby or terminate - crazy! The saddest part is that people are actually voting and choosing terminate. Are we that selfish of a society that a baby that might be a bit harder or seem like an inconvenience is so easily discarded. I am not saying this woman is taking it lightly - I know that she is agonizing and is scared but what about the random people (45 the last time I checked) who are voting for her to terminate. It's just awful in my opinion.

I've spent way too much time tonight looking at pictures of 24 week old babies. Yes, babies that is what it is growing in her belly. I can't get the images out of my head. I think about how completely in love we were with Annabelle by 24 weeks and the thought of terminating her is just a nightmare.

By the way - a 24 week old baby can live outside of the womb! I found this video tonight.


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October 11, 2010

Still here

I feel like so much has happened in the past few weeks, both good and bad that I want to share. I'm just really struggling to find the time and energy to do it. Thank you for continuing to check in on us and know that some great pictures and video of Annabelle should be coming soon.

What I'm hoping to blog about soon ~
  • Annabelle and her new AFO's - really great stuff!
  • Annabelle's Strabismus Surgery scheduled for the morning of 11/11 at Millers Children Hospital.
  • Our fear that we won't be able to keep Annabelle infection free. Sadly, she got another UTI that landed us in the ER on 9/30. She did 8 day's of Cipro and then back on her Nitrofurantoin which for some reason she keeps throwing up this week. Her urine looks a little cloudy today and I am just praying that it doesn't turn into anything.
  • Annabelle is having another renal ultrasound in the morning (10/12). It won't be painful physically but the results will probably hurt. I seems that things keep getting worse with her urology. During her last urodynamics the Dr. has increased her reflux to Grade 4 and bilateral - disappointing. We will see what tomorrow brings.
I came across this picture last week and realized I never shared it. I just love her sweet face here. This picture was from August 31st when we spent a few hours at Mother's Beach.

Just in case anyone was wondering - YES, she is worth every bit of worry, fear, stress and expense! Annabelle is such a source of happiness in our house - she makes us all smile even during the difficult times.