Last Post of 2013

One of my goals this year was to post more blogs than I did in 2011. I did it! I posted 28 more blogs, making this my largest number of posts year. This year was full of everything. Ups and downs, joys and tears, frustrations and encouragement, growth and hurts. I am out of time for this year but stay tuned for my 2013 recap in the next day or so! Happy New Year to all my friends and family!

Christmas 2013

Well, last night was the final Christmas hurrah for us as we celebrated with my side of the family. On the 24th, we spent the day watching movies eating snacks and enjoyed a fun Mexican supper of hard shell tacos, requested by Arianna. Our movies this year were Despicable Me 2 and Turbo, both of which are very cute shows and since Sarah loves slap stick humour these were great for her. The little girls went to bed on time and the older two and I finished up wrapping the stocking stuffers, as we've done in the years past. Of course the kids all got to open their one (predictable) gift of the annual pyjamas!

Christmas morning began early for a couple of the kids (Joshua and Arianna) who were allowed to open their stockings once they got up. Of course I was up shortly after them as I have alway been one of the first to wake up on Christmas morning. Sarah joined us around 7:45 and was delighted in being able to open more "p'esents a me!" We have always determined that when four of us are awake, then the other two (Doug and Andrea) get to wake up as well. So this year, things were rolling by about 8:00.

 Sarah LOVED opening presents this year. It was as if she'd never experienced it before!

 Andrea's typical "first thing in the morning" pose. I'm sure I have this same picture from years past.

 I re-gifted Andrea's American Girl doll to Arianna this year. Probably my favorite expression. Ever.

 An official Harry Potter scarf and another sketch pad.

"All I wanted was Jedi robes"

This year we did things a bit different. Each kid received two gifts but they were what they asked for. They were still surprised but we didn't do practical this year. It was SO much fun!!

Later in the day, we headed to Doug's parent's for Christmas dinner with his mom's side of the family. 

Boxing Day started out pretty slow. My family came over later in the afternoon and we all exchanged gifts. It was really a good evening and a great chance to see everyone again (less one brother). We didn't make a late night out of it but after a busy week, that was ok. 

I woke up this morning ready to regain ownership of my living room and that will be in the form of taking the tree down. I loved it this year. It is smaller than other ones we've had and took up much less space which was nice. I think I'll leave my village and nativity sets up because they don't take up a whole lot of room or floor space. 

One other really COOL gift that my kids and nephew received from my in laws were personalized coveralls. 

"Grandpa Fidelak's Pit Crew"

Friday's Thoughts

So it's been about a week since I last blogged and in that time I've done some thinking and reflecting about a few things.

1. Although the information from Sarah's pediatrician was a bit of a blow (the whole 'two steps forward, one step back' kind of thing), I know a few things. Number 1, nothing has changed. Sarah is still Sarah and I am beyond blessed to be her mom. She is a precious gift to our family and we couldn't be luckier. Number 2, a word, label or diagnosis doesn't change anything. Not her, not how we deal with her or how we care for her. Number 3, God is in control. She is His child and whatever He has in store for her will be amazing.
2. I had quite a few visits and coffee dates with friends over the past 10 days. One night we had two of our family friends come for a big pot luck supper and shared lots of food, good conversation and grand amounts of laughter. There were six adults and 12 kids altogether and everyone had a really good time. 
3. Christmas is just around the corner and I'm getting excited! There's not a whole lot of baking left in the house because with four kids who love sweet shortbread and the delightful layers of Nanaimo bars, it simply doesn't last long. I may be making another batch or two the day before Christmas at this rate. We bought a new tree. It's a bit narrower and seems to fit the space better. This year, I didn't use any of my "themed" ornaments. Just the ones that the kids, Doug and I have received over the years are up. It's quite nice and very different from my traditional "perfectly done up" tree. It makes me happy that I let it go this year. 
4. This weekend is going to be a busy one. On Saturday, we will be celebrating with Doug's parents and brother. This is so we can enjoy some quiet family time before the BIG family 'do on the 25th. Sunday's worship will be led by Doug with Andrea accompanying him on piano. After that we will be attending "Carols by Candlelight" where Doug will be doing a trombone solo and Andrea will be taking part in a skit. Sadly, Joshua has a shift that afternoon so he won't be with us for the latter event. I'm sure we will all be good and ready for a quiet evening at home when everything is done!
5. It's been a refreshing week. Lots has happened and I feel a new peace upon me. 

Happy Friday!

Another Song...

I was listening to some music on my laptop and this song came up sung by three young girls. I love these lyrics, especially the chorus so that's all I posted:

Where There Is Faith

Where there is faith

There is a voice calling, keep walking

You're not alone in this world

Where there is faith

There is a peace like a child sleeping

Hope everlasting in He who is able to

Bear every Burden, to heal every hurt in my heart

It is a wonderful, powerful place

Where there is faith

My Facebook Cover

Parent Appointment (12.10.13)

Yesterday afternoon, I had the opportunity to meet with Sarah's pediatrician. By myself. Without my sweet (screaming) daughter. It was probably the best appointment I've had with him. The clinic was closed except for the doctor, myself and a few nurses.

When I sat down in his office, Sarah's chart was set out and open already, which was kind of nice because I felt he was prepared. For a while now, Sarah has been displaying some really odd symptoms and I needed to voice my thoughts and see what Dr. M's ideas were on it. Some of these things are:

• flaps her arms
• spins (and doesn't appear to be dizzy)
• she doesn't make good eye contact
• no understanding of fear and danger
• laughs inappropriately
• insensitive or oversensitive to pain

He showed me Sarah's head circumference chart which indicates her head size to be markedly lower than the average five and a half year old. He said that out of 100 kids, 96 of them would have an average sized head, two would be above average and two would be below. Sarah would be one of those two and she's an extreme case. Now, because her head is so much smaller than average, the result is severe delays in all areas of development. These include fine and gross motor skills, social interaction, auditory memory (remembering what she hears), visual memory (remembering what she sees), self help, expressive language (what she can speak) and receptive language (what she understands).

So, in a nutshell: all of Sarah's delays are due to the extreme Microcephaly: (Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing. Microcephaly can be present at birth or it may develop in the first few years of life). 

Depending on the severity of the accompanying syndrome, children with microcephaly may have:

•  or learning disability
• delayed motor function and speech
• facial distortions,
• dwarfism or short stature,
• hyperactivity,
• seizures,
• difficulties with coordination and balance, and
• other brain or neurological abnormalities.

Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.

Previous notes taken from HERE

Due to her immaturity (Dr. M placed her at about age 2), she might display autistic-looking "symptoms" only because of the delays that are reflective of the Microcephaly

He told me that she will always be fairly behind kids her age and the gap will continue to grow as she gets older and that's because she's developing at a much slower rate than others. She also very likely will be dependent into her adulthood. Maybe not, but he said to be prepared for a lifetime of supporting her.

Sarah is still really small for her age and is severely disproportionate which is why she looks like a little adult. If you don't know what I mean, the next time you see her, you'll that she doesn't have the large "bobble" head that other kids have.  So, when all is said and done, I am really thankful I had to opportunity to talk to Dr. M without a (loud) distraction. He is blunt, honest, very good at what he does and has a true love for kids, including Sarah. I also know that nothing has changed and that Sarah is still Sarah. Homeschooling her is and for now, always will be the best thing for her because I can follow her lead and teach her what I think is relevant to her. I am blessed to have friends who are supportive and encouraging, including someone who texted with me until 10:30 last night offering me some hopeful and reassuring insight to what I learned today. She's very appreciated and I am very thankful for her and the time she gives me!  This is what recovery from a Dr. appointment looks like! So how are we doing? Doug and I are now processing the idea that Sarah may possibly be dependent on us (or someone else) for a very long time, possibly forever. I think both of us lost some sleep last night as those were the thoughts that consumed us. Sometimes it feels like I take two steps forward and then one step back as far as my faith walk goes.  The verse that keeps coming to mind is found in Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. This is the foundation of what keeps me going on the rough days when I feel like the weight of the world is on my shoulders.  The song The River by Brian Doerksen is one of my favourites and seems to be ringing true for me today. If you have the chance to listen to it on You Tube, you should. Here's the lyrics: To the river I am going bringing sins I cannot bear  Come and cleanse me, come forgive me Lord I need to meet you there  In these waters, healing mercy flows with freedom from despair  I am going, to that river Lord I need to meet you there  Precious Jesus, I am ready to surrender every care  Take my hand now, lead me closer Lord I need to meet you there  Come and join us, in the river Come find life beyond compare  He is calling, He is waiting Jesus longs to meet you there  He is calling, He is waiting Jesus longs to meet you there  Precious Jesus, I am ready to surrender every care  Take my hand now, lead me closer Lord I need to meet you there  Take my hand now, lead me closer Lord I need to meet you there

Wordless Wednesday

 What Sarah does after a long, busy day (and one that includes a doctor appointment).

 She loved playing with these wet, gel balls. It kept her busy for a very long time!

 A Christmas ornament that I received from my mom. My Oma brought these over from Holland and I *believe* my sister and I have the last two of the original set.

 A bell that used to be at my mom's house.

 My first ornament when I was a baby. It was always the heaviest and I remember having to find a really strong branch to hold it up!

 An ornament that my sister bought me when she went on a trip to PEI. I love Anne of Green Gables.

 Doug bought me this one after we suffered two back to back miscarriages and then found out we were expecting Sarah!

Both Doug and I have one of these gold ornaments that has our name engraved on it!

At The End of the Day

If you click on the picture, it will open up in a larger format or you can just read it below.

At The End of the Day

by Stephanie Fidelak

At the end of the day when I've put your toys away for the 100th time

and I sigh in dismay at the messes you created

At the end of the day when I put one more load of laundry into the machine

and look longingly at the chair that I want to just sit back in

At the end of the day when I climb the stairs to get you ready for bed

and really don't want to change another diaper

At the end of the day when I put your fuzzy sleeper on

and I feel your tiny arms wrap around my neck

At the end of the day when I lay beside you 

and read the same story "again" and "again" and "again"

At the end of the day when you curl up beside me

with your tiny fist holding your soother and arms clutching your stuffed sheep

At the end of the day when your long lashes rest on your cheeks

and you give in to the call of slumber

At the end of the day as I watch sleep take over your little body

I gaze at you in wonder

At the end of the day I want to hold onto you just a little bit longer

and pray that I never forget how sweet and wonderful you are

At the end of the day when I get into my own bed

I thank God for the gift of you and remember how blessed I am.

My Little Christmas Caroller

Here's a little musical rendition of "Jingle Bells" brought to you by Sarah!

Facebook Hiatus Update

Well, I have managed to stay off Facebook 99% of the time. I did a couple checks on the weekend but I'm only on for a moment or two. It is still so easy to get sucked into the time constraining effects of it and I'm finding my time better spent on other places. I've been exploring blogs when I'm online and once that's done, I hang out with my kids, spend time in prayer and read my Bible. It's been too long since I've done that and I feel encouraged because of it.

This morning I was reading in Philippians and the verse that popped out at me today was "being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." God started me and God will finish me. He is continuing to work on and with me, and will continue to do so till the end. Some days I feel so inadequate as a wife and mom and yet this verse is God's promise that He's not finished with me yet.

Pediatrician Appointment (12.04.13)

Well, if I were to anticipate anything going wrong this morning, I was not disappointed. As I like them early, Sarah's appointment was booked for 9:00 in the morning. That does mean an early start but it also means that the doctor can't be behind yet and we usually get in fairly quickly. If things go smoothly, I can be in and out and back home (driving included), in less than two hours. By 8:00, I had Arianna and Sarah in the van and we were on our way. I entered the address into my handy dandy GPS and set off. After a bit, I thought it was odd that the GPS started leading me back home and so I ignored it and continued on my way. As I approached the freeway (the Whitemud), I read the warning sign of an accident and major delays. Of course.

The GPS told me to turn off the freeway and so I did. I followed it to a tee. The only problem occurred when I didn't know how it was going to take me to where I wanted to go. I had only been down some of these roads as a passenger and felt quite intimidated and a bit worried. So, I called the one person I knew would know and could explain it to me... Doug. As he knows me so well, he gave me landmarks that I would pass, where the roads would lead and how the GPS was taking me to the office. After driving for almost an hour and a half, I finally arrived, 25 minutes late. Thankfully I wasn't the only late patient and it was all fine in the end. Once we were settled in the examining room, the usual tears began to fall. And cry she did. She didn't gain a whole lot but she doesn't eat a whole lot either. I left the appointment thankful that it was over and I was more than happy to get home.

Once I got home, I called the pediatrician's office and made a parent appointment for next Tuesday so I can discuss some other things with him. I just feel like I'm looking for more answers as to what might be going on with Sarah... more on that next week.

Weight: 33 pounds (32.5 pounds in September) 
Height: 41.5 inches (40.75 inches in September)
Head Circumference: 46.5 cm (46.2cm in September)

December Already?

Wow, the month of November sure flew by fast and I was caught a bit off guard when my nine year old reminded me that "it's only 25 days till Christmas!" It's right around the corner and I realize how much I need to do to get ready for that. I've been on the ball and have been buying presents since August so that task isn't so overwhelming this year. I'd love to get that all done in the next little while. I haven't done any baking this year and it's a little disappointing that with our busy schedules, my sister and I won't be able to do our big bake-a-thon together. We've been doing it since 2007 and this will be the first time since then that we're on our own. I have done absolutely no decorating in the house yet either. The main reason being is that I have two pianos in my living room. Yes, two. I'm not quite sure where I'm going to stick a tree in here yet. I guess I better get a start on things. The new year is just around the corner now as well. I'm hoping that the next 25 days before we celebrate the birth of Jesus will be peaceful and enjoyable in my home. I'm going to try to do an advent study with my kids as we try to turn our focus on the real reason of the season.

Facebook Break

On Tuesday, I made the conscious decision the take a break from Facebook. At first, I wasn't going to say anything but then I thought, if I actually said something, I would be more accountable to myself as well as the people on FB.

To me, Facebook had become a place where I always was and it was consuming a lot of my time. Now, I'll admit that yesterday I went on only to find someone's mailing address and once in my messages, I found someone who might be able to be a respite worker for Sarah in January. I didn't look at anything else though. Yesterday was tough. I realize now how often I would just pop in to check it out. I've decided to make sure that the times that I feel like I should do a quick check that my time will be spent praying or reading my Bible. I was encouraged and inspired by some friends last night and although I won't be off FB forever, at this time, I don't know when I'll be back.

**Disclaimer: I can post this on FB through Blogger without being on Facebook itself.  If you need to get a hold of me, feel free to send me an email or text!

Two Years Today

It was this day in 2011 that we received the news that Sarah had a form of Cerebral Palsy.

 {LINK TO ORIGINAL POST}

I can remember leaving the pediatrician's office in a state of shock and disbelief. His informing me that is was probably an oxygen deficiency in the early months of pregnancy assuring words of "you didn't do anything wrong" or "this wasn't preventable" weren't exactly comforting at the time. The past two years have been nothing short of wonderful with Sarah. Her progress in speech has probably been the biggest change and little by little, her development is growing. At her own pace. This does mean though, that the gap between her and her peers is getting larger. It wasn't so big a few years ago but I notice it more now.

For the most part, I've come to a point of acceptance of the diagnosis but I still have moments of grief and sadness. I'm sad for what she is missing, although she lives just in her moment. I'm sad for what could be or could have been. But when the day is over, she is the best therapy in the world.

..............

I came back from a movie with Andrea this afternoon and when Sarah noticed me, I saw the delight in her eyes, felt her tiny arms around my neck and melted when I heard her say "Mommy! You came back!" It is good to be missed and I am so blessed.

Snowy Days

Well, it would appear that winter has made it's appearance here in some parts of Alberta. It's been recorded that 55 centimetres or 21 inches has fallen in the past week or so. That's a lot of snow. I don't particularly love winter since it just seems to last for so long. I like sunshine and being warm but such is not the case when I live in this place. But I do agree that the covering of snow is beautiful in it's own way as it covers everything in a thick white blanket. It also provides a whole new play level for the kids and they can (and do) spend hours outside sledding, building snow forts and whatever else their creative minds can create. These long wintery days are also spent watching our traditional Little House on the Prairie movies, eating popcorn and snuggling down under the many quilts that we have. The snow also opens up the sport of winter driving. Momentum is your friend in the thick drifts, you simply get used to the ABS kicking in, and there's nothing quite like sitting at an intersection with a green light as you inch through because the road is glazed with sheer ice. Welcome to Alberta in November!

Question #8

Which of God’s promises in the Bible means the most to you right now? 

I would have to say that my go-to verse these days is Isaiah 41:10.

So do not fear, for I am with you;

    do not be dismayed, for I am your God.

I will strengthen you and help you;

    I will uphold you with my righteous right hand.

I've had a lot of really good days lately with just the occasional frustrating moment here and there. We have found a lovely church to attend, Doug's depression seems to have less lows than it has in the past and I think I'm doing alright. I'm thankful for the word of God, full of promises to me. 

I Did It!

In 2011, I had 131 blog posts. I began this blogging year with the hope and determination to beat that number. And I have! I've written over 140 posts to date! My initial goal was to do 182 posts which would average about one every other day. There's still five and a half weeks in 2013 and so maybe I can do it!

Two Meltdowns, One Evening

Once again Sarah was fixated on going outside at 7:30 this evening. In addition to the time, the temperatures had dropped to about -25° (which is about -13F°) and it was getting colder. Joshua and Arianna had gone out to play and once Sarah got word of that, she was bound and determined to join them. I really didn't feel comfortable letting her go outside because there's no way she would keep her face covered and I knew she'd get too cold. This caused a half hour long spell of crying, screaming and jumping up and down. It looked like a classic tantrum that one might see in a two year old. I was really sad and frustrated at the same time. Disappointments are very tough as is not being able to reason or justify with her. She doesn't understand "it's too cold" or "it's too late" so she just has to tough it out.

The second meltdown occurred as I was getting her ready for bed and she was insisting on a bath. It was already past her bedtime and I was wanting to put the day to an end for her. I finished putting on her jammies and held her close as she cried over and over "I need a baff!" and fought me. I laid her down in the bed and with all the love and tenderness I had, covered her up and snuggled her good night. I left her crying sadly in the bed, knowing there was nothing more I could do for her at that time. Thankfully it was also time for Arianna to go to bed and she snuggled in with Sarah which calmed her down fairly quickly.

Now she's sleeping peacefully and I'm grateful. Here's hoping for a good night.

Question #7

Are there times when God feels distant from you?

I would have to say yes to this. I think one of the harder times was when we were showered with diagnoses for Sarah in 2011. I was so desperately trying to sort out the "whys" and there just were never any answers. I think in retrospect, God was close but I just didn't let Him near. It took quite a while before I realized that I was putting up a guard and I needed to trust Him in it all. I still have moments when I wonder if my prayers are simply hitting the roof and then once more, I am reassured that He is ever present and listening to me. It's times like that when I think maybe I need to slow down, rest my heart and soul and spend time with Him. Almost as if He feels distant because I am putting the distance between us.

Question #6

When do you feel especially close to God?

I think I feel closest to God when it is quiet. When there are no other distractions to conflict with my mind. Some days in this busy life of homeschooling three kids and keeping an eye on Sarah, the quiet moments are few and far between from each other. I really try hard to take times during the day when God is the center of my focus. This has been a process that I've been working on for quite a long time and I'm really beginning to feel the benefits of knowing Him personally. I'm thankful for certain people who have become friends over the past few months and those relationships that keep on growing.