A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Sunday, October 31, 2010

Treat or Treat!

This halloween was definately fun!
Not only was I sewing like mad for the last 2 weeks - but I actually had Kyle dress up for the family theme! (OK dress up might be stretching it, a plaid shirt - that he said he'd wear again, and an axe - but I'm going with it!)
But it was actually very rewarding to sew up the costumes and plan it all. I had Little Red Riding Hood stuck in my head for months! (Even since Colleen wrote a post about planning for Halloween in August). And I searched and searched and searched for cute riding hood and wolf halloween costumes. But I could not find what I was looking for! But I persevered. With a little help from Martha Stewart I was able to hand-sew exactly what I wanted! (Yes I said hand sew - sewing machines don't like me).
But a very successful halloween costume day - if I do say so myself!
I think Nick enjoyed himself - much better than last year - when he got to dress up as well.

Wednesday, October 27, 2010

Who doesn't love Calenders?

Thank Goodness It's Friday Lottery Calendar

The Spina Bifida Association of Ontario has kicked off it's annual charity lottery calender. Not only is it a callender that is featuring beautiful artwork from children who have spina bifida and/or hydrocephalus, but it is an opputunity to support the association AND you get a chance to win some cash (only if you live in Ontario). Anyone who is interested who lives in the states or elsewhere is unfortunately not eligable for the lottery portion - but can still enjoy this beautiful callender!

I have not sold these callenders before but am very excited to start. In fact I have already sold 2 batches, and working on my 3rd batch. These things are 'flying off the shelves'. Buying is very easy, you can buy one from me directly, or you can phone, fax or mail an order form. Just mention that you are buying from Amanda Ridding.

"Thank Goodness It's Friday" Lottery Calendar

Support a worthy cause and give a gift that keeps on giving throughout the year!

Not only is the calendar beautifully designed and functional but there is an added bonus - the opportunity to win cash prizes from $100-$1,000.

Buy several as gifts! The calendar is a unique gift for everyone on your holiday list from family members to colleagues and is a fantastic way to promote awareness of spina bifida and hydrocephalus in your community.

Calendars costs just $20. Proceeds support vital SB&H programs and services.

Why BUY a Calendar?

•Proceeds will assist children, youth and adults living with spina bifida and/or hydrocephalus across Ontario.

•This beautifully designed calendar features the unique artwork of 12 children who are living with spina bifida and/or hydrocephalus. Every month is an interesting expression of their talents.

•The calendar is an excellent way to inform friends, family and the community about spina bifida, hydrocephalus and the Association.

•A great gift idea for the holiday season or just to show you’re thinking of someone.

•Everyone has a chance to win in the raffle lottery – in fact you can win more than once since winning tickets are returned for the next draw.

•We are giving away 99 cash prizes throughout the year worth a total of $15,000!

•A win guarantees a minimum cash prize of $100!

•Thank Goodness It’s Friday means that you can win cash every Friday throughout the year.

•Bonus draws on the 1st, 15th and 27th of the month bring added value.

•Win once and the calendar pays for itself!

Buy a Calendar for Your Chance to Win!

When you purchase a “Thank Goodness It's Friday” Lottery Calendar, not only do you support SB&H programs and services …you have a chance to win your share of $15,000 in prize money!

99 cash prizes totalling $15,000 ranging from $100 to $1000 will be awarded:

$200 Thank Goodness It’s Friday (each Friday January to May & July to December) 48 prizes

$200 Thank Goodness It’s Friday June Special (Fridays in June for Awareness Month) 4 prizes

$100 First of the Month Bonus (First day of each month) 12 prizes

$250 Mid-Month Madness (15th of every month) 12 prizes

$100 Payday Advance (27th of every month) 12 prizes

...PLUS 10 fabulous bonus draws:

$200 Valentine’s Day

$300 Family Day

$200 St. Patrick’s Day

$200 Victoria Day

$200 Canada Day

$1,000 SB&H Anniversary

$200 Labour Day

$250 Thanksgiving

$200 Remembrance Day

$500 Holiday Giveaway

$750 Year End Special

Win more than once! Winning tickets are returned to the drum so that you can win again!

How to Order: (Mention Ridding Family when Ordering)
Place your order with SB&H to have your calendar mailed out today.

Order By Phone: Simply call 800-387-1575 or 416-214-1056.

Order by Fax or Mail

1. Download and print an order form
http://www.sbhao.on.ca/about-us/tgif-lottery-calendar Lottery License M659430

2. Fax your completed to 416-214-1446

3. Mail your completed order form to:
P.O. Box 103, Suite 1006
555 Richmond Street West
Toronto, ON M5V 3B1


Tuesday, October 26, 2010

Today is all about Katheryn

I think it's time for a Katheryn post.

When I was pregnant and we first got Nick's diagnosis I was very concerned about how this would impact Katheryn. I was worried about taking away from her, I was worried about things not being fair. I was worried about her losing out and losing her parents to the needs of a younger sibling.
I worried so much for Katheryn.

If I only knew...

 It was love at first sight. He is the first things she thinks of in the morning, and the last thing at night. Her favorite thing to do? Run around and make him laugh, or throw things and make him laugh, or jump up and down and make him laugh... you get the picture.
Katheryn taught Nick to squeal and scream! She is helping him talk. Saying mamamama and dadada.

Katheryn is an itty-bitty thing. She is the older sister by 19 months, but is the same weight as Nickolas - she got checked out as 25lbs 8 oz today - time for celebration - she is officially BACK on the percentile charts! She is full of energy and is a very, very, very picky eater. I think this is part personality and part terrible twos - we are smack dab in the middle of that lovely stage at 2 1/2 years.
(WHAT?! it doesn't magically disappear when she gets to 3 years).

Katheryn is a stubborn, stubborn child. She knows what she wants and will do everything she can to make sure she gets it. She doesn't call Kyle daddy, she calls him wow. Started about 4 months ago, before that he was mom. But she did call him daddy for a while. Her first words. She is only now starting to call him daddy again. She'll start saying daddy, then stop and say wow. Like I said, stubborn child!
She LOVES Dora and Boots (all monkeys are boots) as well as the Backyardigans (Pablo is her favorite - that is the blue penguin), oops sorry we can't forget about Backpack and Map (also from Dora).

Her favorite colour is blue. She loves butterflies and balloons (mylar). She is finally talking in sentences, and I only have to guess what she is saying 10% of the time. She can count to 12, knows up to 5 on her fingers and can identify all the letters in the alphabet. Her favorite letter is 'W'.

She has Sammie, our Bernese Mountain Dog, wrapped around her finger and really likes telling him "oush" and pointing when she wants him out of the room. One of her jobs is to feed Sammie his food at night, as well as help mommy do the laundry.
Katheryn does not wake up well. From a nap, in the morning.. If you wake her up, you pay for it! Except for Nick. If you put Nick in the bed with her in the morning, she turns over, looks at him and smiles. Nick! Even when he's pulling her hair. (One of his favorite things to do).

In the morning she comes in and helps me "help Nick pee". She knows where all his catheter supplies are, and what we need. She only runs off with everything about half the time. She LOVES being chased!

I am sure that I am missing so much of what makes up my little girl.

I think I need to stop my post, Katheryn is climbing into my lap and saying "mommy tee-tell me" (tickle me).

Wednesday, October 20, 2010

The Power of Positivity and Prayer

We are a community that is ready to take over the world! I really meant to post this yesterday. But somehow life got in the way of my blogging! Funny how that happens.

Today at Noon (EST) another mother has organized (if such a thing can be organized) a Worldwide Day of Prayer. Prayer is very  powerful, but for those people that do not pray or wouldn't participate because of the religious undertones of prayer I am suggesting just taking a moment, a minute or an hour, to think. Think positively, but think about spina bifida and the joys this brings to your life. Think and be thankful for children, mothers (and fathers), family and friends for what they bring into your life.

Please send positive thought to all of those parents who are struggling with an unimaginable decision. That they can find peace and strength. I know that when we decided to continue with the pregnancy I was filled with peace from this decision.
After Nickola was born, I had a number of moments by myself and with family or friends in which we marvelled that THIS was the child we were asked to terminate.

This is Colleen's message to everyone who is joining us in an hour of Worldwide Prayer:

October is Spina Bifida Awareness Month (in the US), 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 be...autiful 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 noon EST. Pray for as long as you feel led. Pray individually or with another person or 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.

“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)

Please take today to invite others to think about what spina bifida, what disability and what life means to them. Lets take an hour to change the world!

Monday, October 18, 2010

Today I am a mother....

I think in my post yesterday I was a nurse.
And I even feel a little guilty about that. I feel that I should have a post praising my Nickolas and all of the other children and families who are here today. Not 'defending' someone took all of the good out of our lives. Who reminded us that there are people out there who thinks that a child with spina bifida deserves to die, or to never be born.
But I also had to recognize that I once faced that agonizing choice. The trial by fire. But I emerged unscathed. I triumphed. And I have the scars to prove it! (I was thinking that metophorically, then thought yes I do have my c-section scar.) And Nickolas has his scar. His scar that I am so proud of.

But today I am posting about love and joy and a choice to take a step of faith. Today I am posting about the amazing mothers and children that I have loved reading about and getting to know. I am proud to be a mother of a child with spina bifida. I am proud to have made my choice.
Today I am a mother and I am proud.

Spina bifida is about so much more than doctors appointments, medical jargon and surgeries. It is about love, hope and faith. It is about laughter and joy. It is about a child who teaches the parents what it is like to live. It is about miracles and much much more than milestones and accomplishments.
It is about being aware and proud and about redefinitions. It is about finding a family who knows exactly where you are and where you are going. It is about finding confidence and courage that you didn't know that you had.
That is what spina bifida is to me.
This is what every mother who blogged over the weekend about how much they were devastated and disgusted about what had happened in our community. I think this is the blog that I should have written as a mother.

Please look at other mothers who took this opportunity to express their joy at their children who also have spina bifida, who are not defined by a medical diagnosis, and are the best things that happened to their parents.
Joanna and Jet
Jill and Kingsley
Nicole and Annabelle
?Jen and Charlie (sorry I couldn't find your name - bad me!)
Selina and Madison
Kimberly and Jonathan
Star and Tanner
Sara and Ruth
Stephanie and Nathan
Cassie and Caleb - definitely check out Cassie's site - she is showcasing different kids with SB every day this month! - Nick was there with all of his superstar buddies!
Kari and Toby this site also has postings from other moms as well - great central resource!
Mom Dugan and Brenden - sorry I couldn't find your name!

I am SURE there are more postings out there. On top of whatever is on BabyCenter and facebook.

And because it's Monday - Lets talk about some meterstones!
-babbling - FINALLY - dadada and bababa are the favorites
-getting on his hands and knees - when he is angry or excited
-resting on his knees and playing with something elevated
-following directions - putting a ball in a basket when asked
-Eating table food
-actually eating any food he can get his hands on - he's our little land shark!
-Not falling over AT ALL when sitting
-Reeeeeaching forward for things until he is allllmost over onto his belly
-Knowing what he wants - if he wants to put his fingers in your ear, he pushes your head away
-Sleeping (mostly) through the night
-Cut his 5th tooth!
-started on milk! (Goats milk - great for the constipation problem) though a sippy cup
-entered into a battle of wills with his mother (has alot to do with the above point)

Sorry no pictures!
I was crazy busy last week, I presented my Master's (of Nursing) Research at a conference (and won an award) - Yay for me! And things have not settled down since!
I promise picture this week!

Sunday, October 17, 2010

I think I’m going to go there…

I think everyone in our blogging SB-mom community has been touched by the struggles of another mother. This mother who posted a poll on her blog asking strangers to weigh in on her options of what to do with her unborn child who was diagnosed with spina bifida. To participate in the MOMS study, to continue with the pregnancy and not participate, or to terminate.

I read her blog that lead up to the poll. I read how she presented the choices. I also read her post on our baby center website and the hurt and hardness that ensued. I can see how insulting it was to a mother with children with spina bifida, asking the public if their children should not have been born. I can so easily see and feel those strong and passionate emotions, I felt them too.

In fact, yesterday I wrote a whole letter addressed to this person about how she chose to present her nightmare of trying to choose the right path for her family, her unborn child and herself. I felt that she completely presented spina bifida in a negative light, without paying attention to the joyful experiences and lives of spina bifida. I read some of the responses on the BabyCenter site, I read fellow mothers on facebook and how upset they were, I read other mothers blogs and how upset they were. Like I said this is something that has profoundly impacted our blogging-internet community.

I talked to my husband and my sister about this poll. They could understand where she was coming from. How she was looking for anything, anybody who could tell her what to do. Because she was so lost. They reminded me that I had been where she is right now. And that got me thinking…

Here is the tricky part.

Then I read her other post. The post in which she explained why she posted the poll. The despair she felt in reaching out to other mothers about their choices and how she felt she was battered down when she tried to be honest. Her post actually made me delete my message and send her one on an entirely different level.

I do not condone the poll. What I can do is empathize with a woman who is so lost, so unsure that she used the internet to try to get answers. This is something that I use every day. The problem with the internet, blog postings, forums and emails is that it is so easy to offend someone. To post something that in your head you mean one thing, and when someone reads it, it means another.

She came seeking hope and support and then things went horribly wrong. I will blame the internet because I cannot believe that someone would so obviously insult us. Let me also say that I empathize (even more so) with all of the mothers who are so profoundly hurt by the entire situation. Who could not sleep and felt that they had to defend the lives of their glorious children. I can empathize because that is me as well! I read the blogs in response to the situation and marvelled at the children we have and the obstacles that have been overcome and the worry that spina bifida is seen in such a bad, negative light. In contrast to our awareness campaign to REDEFINE SPINA BIFIDA. This situation seems to spit in the face of that whole way of thinking and celebration of spina bifida in the month of October. But I do not think that this is what was meant.

Maybe it is my training as a nurse, as a person who sees individuals in the worst part of their lives, and offer comfort and empathy as well as medical care. To care for the soul and the body at the same time.

She did respond to my email, something that I am profoundly glad.

She discussed what makes her so scared about having a child with spina bifida. She told me about people she had talked about who had lived with spina bifida, in siblings, and parents. The things that they told her shocked me to my core. I think I might have had a horrible time making a decision if I was told, by people in person. A sister of someone with spina bifida who experienced depression as well as witnessed her parents go through many trials ‘She was a joy and a happy little child living with a disability. That happiness and joy has faded over the years to depression and personal grief at all her life is missing’. That horrifies me. Even worse, this sister says that she”went from getting love to not.” She also received a message from a friend whose mother had spina bifida (occulta?) and all the hurt she saw her mother go through. She was told by someone who lived with spina bifida ‘Whatever you decide you’ll hurt… but you’ll hurt more if you have to cope with the significant needs for 20-30 or more years.’

That statement horrifies me as well. But not as a parent who could be facing that. I don’t believe that I am facing what someone 30 years or more faced. What horrifies me, is that this person loved someone with spina bifida and is actually saying this.

I am not sure if I could have been strong enough to continue with a pregnancy if I had received those remarks. I am profoundly thankful that I did find the strength to continue and I am confident that I made the right choice. But it was a choice.

I did consider termination. Since you obviously know what choice we made, it is not obvious the turmoil that we went through in the 2 weeks in which Kyle and I struggled to make a decision that would impact us for the rest of our lives.

I will bring you to those weeks in July. I have discussed when we got our diagnosis, the negativity that was involved in the views of the doctor that gave us our diagnosis.
It is not very often that you face that type of decision. One in which you know that nothing will ever be the same again, and none of the choices are what you had ever even imagined that you would face. I did not want any of the choices. It was so unclear; life became unfocused, dark and despairing. I wanted information; I wanted someone to tell me what was going to happen, what I was looking for. I was looking for any kind of answer!

And it wasn’t only about me; it was about this child, Katheryn and Kyle. It was about bringing a life into the world that would only know pain, only know injustice and despair. It was needing to let go of the idea of perfection that I had in my head and redefine it forever. Or, even as unimaginable, to take the almost easier way out. Stop the life that was inside of me. Deliver a 22 week baby that I had killed. And live with that decision.
The first night, those were my choices. Pain and suffering for a child to live. Or pain and suffering, but a potential for the easy future I had dreamed about. But never knowing about the potential, always having that unknown child in my life but knowing it wasn’t because of a decision.

Having a choice, having a decision was tearing me apart. First it tore me one way, then the other way. We were told of mobility problems, brain and neurological problems, intelligence problems, learning disorders, bladder and bowel difficulties. All of these scary things that you cannot even imagine having a child and baby go through.

That was where I was. Wanting someone to tell me what to do. Give me an answer.

That is why I can empathize with this woman. That is why I can so easily imagine the horror that is going through her head, over and over and over again. We got a lot of information and obviously decided to continue with the pregnancy. Once the decision was made, together, the screen lifted, the fog went away. Light shined on us again and we could smile and be happy. Once the decision was made.

I hope that this post didn’t insult any of my wonderful mothers. My purpose in writing this was not to insult or explain or excuse any of the strong emotions that were involved. My emotions were running very high as well.

What I want to do, why I wrote this, is to provide comfort to my SB-mommies that were so hurt by this situation. I know that you will find comfort in the arms of your children tonight, those with spina bifida and those without. I only hope that this mother will find similar comfort as well.

It is a horrible, indescribably choice to be handed. Not everyone is as strong as we are. I hope you take comfort in that as well.

Tuesday, October 12, 2010

Yummy Turkey

As promised, here are some pictures of Nickolas enjoying his turkey dinner.
Nothing pureed - just shredded and cut up. YAY! He even had some desert (homemade banana cream pie)! AND you might notice the sippy cup full of milk. Yup we started the milk. Goats milk is apparently closer to mommy milk than cows milk and less impact on the constipation (which we battled last week when we started cows milk).
Every single bit of food on that plate went down fine.
And to top off after dinner - Nick decided to start rolling and shimmying so he was underneath the furniture.

I think Thanksgiving weekend was a great time to reflect and be thankful we are all together.


Monday, October 11, 2010

Thanksgiving Day!

 Happy Turkey Day! Actually we should change it to Happy Pumpkin Day!
In Canada we celebrate Thanksgiving on the 2nd monday of October. Just in time to dress in fall colours and enjoy the brightly coloured leaves before all the trees are bare for 6 months! The perfect weekend to sit and reflect about how great life is and how thankful we are for the little things.

We started some new traditions this weekend. Pumpkin patch, wagon rides and petting farm! The original rule is supposed to be that you can't get a pumpkin that you can't carry - but I think we can make an exception for the next couple of years. Kyle got a little overzelous - I think the rule this year was that the pumpkins had to be smaller than the kids. I don't think we were off by very much!

Katheryn really enjoyed carrying around her pumpkin. I think she would have slept with it if we let her!
Katheryn didn't go out to the pumpkin patch - who wants to look for pumpkins when there are rides and things to bounce on. anyways playing in the dirt is for boys!
So off I went on the wagon ride with the Ridding boys - papa, daddy and baby Nick! I have no problem playing in dirt - or more realistically - putting Nickolas in the dirt so I can get all kinds of pumpkin pictures.

On a weekend that we celebrate what we are thankful for. This picture says it all.

 Beleive it or not, they were happy

So we celebrated family, fall and fun we also tried to get some photos. Mommy was very optomistic when buying the special Thanksgiving outfits. Kiddies had their own ideas. We tried to get pictures of all the Ridding children - including Madison (she had the same outfit as Katheryn only in pink).
So picture this with another child crying beside Nickolas - who is just a little faster climbing down than the other two.

And it is the spontaneous pictures that turn out the best anyways...

Stay tuned for Nick's first turkey dinner (not pureed)

Monday, October 4, 2010

A Gold Star Day!

We are in the middle of our new physio block and Nickolas continues to show off his stuff! I'm not sure how I like this block stuff. What if he's still doing great work and oops, too bad - we're at the end of the block... See you in a couple of months!

He is starting to do circles on his belly. He'll go all the way around - no forward or backwards - but he's using his arms to move himself!

Let's see what else is Nick doing?
Oh yeah! If I put Nickolas onto his elbows and knees - he is staying there! Almost ready for crawling!!!
 How exciting is that!

And we got measured for our standing frame today. I'm not sure about the AFO's - I completely forgot to ask. Our physio was cut short today when Nickolas completely FREAKED OUT! Crying and screaming and refusing to do any work.
He was just really tired, and his teeth are bothering him, and we are trying to get him weaned, drinking milk from a sippy cup. And all of this on top of trying to get him to work, by showing him toys, making him work for them, and then taking them away!
I can kinda understand why he's so upset.

So he gets tired and upset and things are bothering him. But we are progressing well.
So today Nickolas is getting a big gold star! Way to go for working so well even though it was a tough day for such a little guy!

Another gold star goes to his sister - who is riding her bike a bit, and likes putting on her helmet (so she can be safe).
She doesn't get the peddling that much, but is working on it. But I can push her, with her feet on the peddles and she has a blast!