Deflated.

I think that's the best way to describe how I feel today.  The morning started with a home visit from our EI Counselor and in addition to her simply doing her job, she's become someone I trust, confide in and appreciate.

I agreed to do an informal screening this morning just to see where Sarah is at and to see what progress she has made in six months.  It was exciting and encouraging to see the improvement in all areas of development.  I'm one who likes to have things written down.  I'm a visual person and so I need to see the changes on paper.  So, in my organized fashion, I whipped up a little chart that compares where Sarah was at 35 months and where she is at 40 months. 


The yellow highlights Sarah at 35 months and the blue highlights 40 months. 

Area of Development	Skill Level	Age Difference
Fine Motor	27-28 months	7-8 months
	33-34 months	6-7 months
Gross Motor	25 months	10 months
	28-29 months	11-12 months
Receptive Language	27-28 months	7-8 months
	33-34 months	6-7 months
Expressive Language	27-28 months	7-8 months
	29-30 months	10-11 months
Auditory Memory & Recognition	24-25 months	10-11 months
	28-29 months	11-12 months
Visual Memory & Recognition	18-19 months	16-17 months
	23-24 months	16-17 months
Self Help Skills	31-32 months	3-4 months
	37-38 months	2-3 months
Social Skills	39-40 months	4-5 months (ahead)
	48-49 months	8-9 months (ahead)

 
So yes, she IS improving but she also is still getting older and the way I see it is that she is no further ahead at this time.  Although she isn't at the level of a 18-24 month old, she's still up to 1.5 years behind.  It was when I looked at it this way, I felt my everything simply fall.  My heart, my energy, my spirit.  I guess it leaves me to wonder if she'll ever catch up.  It is hard to send her to a play-based program at our church designed for two year old kids, knowing it is perfectly suited for her.  I believe that she wouldn't thrive or succeed in the preschool program geared for 3-5 years old.

We had an appointment booked with a geneticist since August.  Two months we waited.  Three days before, we receive a phone call cancelling that appointment.  Just. Like. That.  After three phone calls back to them, I receive a new appointment... for November 21.  Another month to wait.  Four days before that one, we will be at her MRI and another week after that, we'll be following up for the MRI.  I'm already looking forward for the month of November to be over.


I'm feeling incredibly discouraged today.  As much as I know and believe I need to follow through with all of this for my daughter, my momma heart wants to just leave her be.  Save her the pain of needles, doctors, nurses and tests.  I wish these next words were mine but I credit my friend Jessica for saying what I haven't been able to put in words:


"There are no guarantees in life, and although we don't want our children to be in pain, we know that even this present suffering can be "worked out" for good as we love and train our children in the middle of their suffering."   


I'm not sure when (or even if) Sarah will ever understand why we are doing this for {to} her.  For now I will continue to advocate for her and do whatever I can to help her.
Philippians 4:6-7
Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.  Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.


Isaiah 41:10
Don’t be afraid, for I am with you.  Don’t be discouraged, for I am your God.  I will strengthen you and help you.  I will hold you up with my victorious right hand.

One of those weeks...

The weekend was spent as a family, with family... celebrating Thanksgiving together.  On Monday, we didn't have much planned other than Doug figured he'd build one of the two gates for our new fence.  Then, he put his back out.  Cleaning out the shower.  Nice.  Now, for the most part, he seldom does anything part way and in fact, this back issue has put him out of commission ALL WEEK. 

Tuesday:
The pediatrician appointment for Sarah that we had booked three months ago.  I ended up having to drive myself (and Sarah) to the office alone.  Now I'm not really afraid of driving in the city but I do find the infamous "Whyte Ave" to be a little intimidating.  Thankfully I had a reliable GPS and good directions from Doug.  As planned, Sarah's EI counselor met us there.  She was going to be the one to push the doctor to get us in at the Glenrose.  I forgot and she didn't know that the pediatrician is allergic to perfumes and other scents.  That meant that she had to leave the room.  So for a while, I felt very alone.  I did muster the courage to ask him what we should do about the Glenrose and his suggestion was to wait until the completion of the rest of the tests.

When I got home, I drove Doug the chiropractor, Andrea to her music lesson, made supper and went to the bank so Joshua could open an account.  I went to bed exhausted... I'm sure I was sleeping by 9:15.

Wednesday:
I stayed home all morning to be with the kids.  They'd taken the entire long weekend off of schooling so we had a little catching up to do.  I (again) drove Doug to another chiropractor appointment, drove Andrea to the auditions at church, threw a pizza in the oven and ended another day.

Thursday:
I headed into the city to meet my sister and aunt for a coffee date.  I had a nice visit with them and it was good to connect.  Sarah also loves the facility of Cafe O' Play and I know it's good for her motor skills.  I made it home for lunch, a third chiropractor appointment, a facilitator home visit, lasgana in the oven, dealt with a little dog's seizure and eventually all four kids to bed.

Friday:
I woke up to realize I would (in addition to everything else), bring the garbages to the curb.  Doug has another appointment this morning that I will drive him to, then to the city to sell some Kijiji items, make meals and try to squeeze in some school work.

*sigh*  I'm just plain weary this week.  Driving, serving, helping... I feel like my job description has multiplied greatly and I'm doing my best to fill in the role of mom, teacher, wife, nurse, taxi, chef... I'll be glad to have this week over.

Another Update

We made the decision to apply for financial assistance from Family Support for Children with Disabilities.  In order to receive this funding, we needed to get a referral letter from our pediatrician stating Sarah's needs and his concerns. This is what it says:

Sarah has developmental delays and Microcephaly. She will always need special education. She has documented delays in speech, fine motor and gross motor and visual memory as well as auditory recognition skills. Her condition is chronic and organic. Any help you can give this family is appreciated and appropriate.

Dr. M.

I knew these were the concerns but I guess seeing them so black and white is harsh and hurts a bit.  Maybe inside, deep down, I had hoped that the letter wouldn't say anything like that and we wouldn't be able to apply...

Philippians 4:13 "I can do ALL things through Him who gives me strength." 

 

A year ago and now

 2010

2011

 2010

2011

 2010

2011

 2010

2011

Seven Random Facts

I received this idea from a young blogger this afternoon.  Simply to write 7 things about myself that my readers may or may not know.   So here you go...

1. I am passionate about my children.  How and where they learn is so important to me.  I love homeschooling them and teaching them about life.
2. I fell in love once and married that young man who captured my heart in grade 12.  I am still crazy in love with my husband who is also my best friend.  I look forward to growing old with him and raising our family together.
3. The past few months have taught me how to be my child's greatest advocate and do whatever I need to, ensuring her greatest successes.  I've also learned how to lean on my Father in my saddest times and thank Him for the joys.
4.  I hope to one day live on an acreage.  I can see our homeschooling journey grow and bloom in the quiet of the country.  I can see so much learning potential if we are out of the hustling, bustling city.
5.  One of my dearest friends lives in Alabama.  We don't talk often on the phone, but we do text and Facebook often.  I can't wait to see her in person again.
6.  I really don't like winter.  Being cold makes me miserable.
7.  I am a morning person.  I love my coffee and the hour before the house rises up.  Time to think, read and pray.  I also use that time to prepare myself for the day to come and whatever it has in store for me.

There you have it.  Feel free to join the blog train and leave a comment in the section below.  

Worries

Today I stumbled upon a blog that is written by a stay at home, homeschooling mom.  In it she talks about finding joy amidst the worries that life can throw at us.  Today, I am going to find joy and set aside my worries.

Joy in my children.
Joy in their schooling.
Joy in my home.
Joy in what I do.
Joy in how I do it.

Setting aside my worries about health, academics, my endless list of to-dos, the lack of time... today I will not worry about those things.  Worry takes away joy.

1 Peter 5:7
Cast all your anxieties on him, because he cares for you.

Sarah Update

It's been a while since I blogged specifically about Sarah so I thought I'd give an update.

Wendy continues to come every few weeks to play with Sarah.  Her visits are both encouraging to me and at the same time, can bring me down a bit.  She brings wonderful materials for Sarah to touch and explore which is helping Sarah improve her visual memory & recognition.  Sarah's current favorite item is when Wendy brings a bag of dried beans to hide toys in.  My sweet girl quickly takes off her socks and wiggles her feet in the bag.  It is a wonderfully sensory activity and I know she enjoys it.

The last visit was one for me to vent a bit.  I received a call from the Glenrose Hospital and essentially felt like the door was closed in my face.  They told me they couldn't help me until or unless Sarah was in a "program" such as a preschool.  I hung up feeling defeated.  I can't and won't put my tiny 3 year old in a school type place.  I don't believe it will help and I'm not open to that idea.  I also asked Wendy to help me begin the process for FSCD funding.  Family Support for Children with Disabilities.  Funding that would help with childcare since I feel that the people I ask to babysit must be quite a bit older and somewhat experienced with her.  People who are ultra patient and understand that she is not of 3 year old abilities.  That, is hard for me.  I think when I complete the application and (if) we are approved, reality will hit once again.  I think the most encouraging words Wendy says to me are "It is really tough isn't it?"  Yes.  It is tough.  I appreciate the fact that she doesn't fluff around it telling me that it will be ok and so on.  She accepts my decision to keep Sarah home and I appreciate that too.  She is my advocate and on my side.  Admittedly, I also have times (usually after she leaves) that I wish I didn't need these visits.  


I try hard not to be too down or frustrated but like everyone else, I have bad days.  Days that I cry more, wish and pray that I didn't have to go through this.   


"I am pressed but not crushed,
persecuted, but not abandoned,
struck down, but not destroyed.
I am blessed beyond the curse,
for His promise will endure
and His joy is going to be my strength

Though the sorrow may last for the night,
His joy comes with the morning."
~Delirious~ 


I'm doing my best to believe these words... really I am.

Random comment

by Arianna today.  While driving around the city doing errands:

"My feet stink.  Does anyone wanna smell them?"

Mmm... no honey.  Put your shoes on and now we'll open the windows for a minute....

A Bunny

For quite a while now, Andrea has been friends with a girl who lives on a farm.  I can't recall how many times I'd pick Andrea up from Tia's with a plea to buy a bunny.  I always gave a firm no.  The last time (about 2 weeks ago), I was asked once again.  After Doug and I talked about it alone and with Andrea, we agreed to let her get one.  It was her money that bought the bunny, bag of food and some wood chips.  Today was the day that Tia delivered the bunny.  There was great anticipation in our house by everyone as the newest member of our family arrived.  The hutch was set up, water bottle and food dish filled and Miss. Pixie was introduced to her new home.

Starting to build the hutch

The completed hutch 

A very happy 11 year old! 

About 2 pounds of supreme cuteness!!

Has it been that long...

since Doug and I were in youth group at church?  I don't recall my first youth event but last night, I dropped off my "baby" at his.  It was an odd feeling of letting him go.  I didn't get out of the van to say good bye.  He didn't hug or kiss me either.  Some bittersweet feelings as I watched my firstborn head off with his friends, ready to face this next chapter in his life.

I remember many youth events... in fact, it was a Friday night (a football game to be specific) that I told a friend of mine that I wanted to date Doug.  Who knew that asking him to be my date for my grad night would eventually lead us down the aisle into our marriage of now 14 years!

Anyhow, it was just an odd-like sensation bringing Joshua to something that I so clearly remember about my own growing up years.  Maybe it made me just feel older.  More grown up.  How silly is that!  Am I ready for junior high... I hope these are great years for him.  Years of friends, growing and changing.

Wow.  Junior high....

Happy Birthday Andrea

Eleven years ago today, I went into the hospital ready to have our second baby.  I had no idea at the time how this sweet little bundle of pink would change our lives forever.  From a cute, round faced, pig-tail haired little girl to a tall, slim, mature young lady... the years have gone by so fast.  

You are an amazing girl and I can see God doing amazing things in your life.  You have a heart to tell people about Jesus and I know He has great plans for you.

You are wonderful with children... both your own younger sisters, and the kids you babysit.  You have a natural gift to play with them and I can see much of me in you when I was that age.  

You can sing.  I love listening to you praise God through your voice.

You are smart.  Teaching you is a joy and it's so exciting to have those "lightbulb" moments together as a concept becomes clear to you!  

You are creative.  I've seen you design Halloween costumes, dresses and other items.  You are crafty, artistic and talented.  I can't wait to see how you put all those to use as you grow up even more.

You are not a morning person.  Your birthday present this morning will tell that!  *smile*

Birthday 2004

Joshua is your closest friend and yet a greatest pest at the same time. 

Birthday 2005

Arianna models you.  She adores you and watches everything you do.  She wants to be just like you!

Birthday 2006

Sarah adores you.  You are her "go-to" person when I'm busy in the kitchen or when I need to run out for a bit.  You are her hero!

Birthday 2007 - First motorcycle ride!

Your dad and I love you.  We love watching you grow into a young woman and we are amazed at how far you've come in your life.  I pray that God protects you in these fragile years and that He continues to show me how to be the best mom to you.  

Birthday 2008

Birthday 2009

Birthday 2010

Today is your day Andrea.  I wish you the happiest of all birthdays and that this year is filled to overflowing with fun, happiness and blessings!

2011

Moving On

We moved into this house in November 2009.  Around that time, a sweet 11 year old girl moved into a house across the street.  Andrea and Cassie clicked like I've never seen before.  Two girls who danced together, spent endless hours at one another's houses, one waited for the other to come home, shared clothes... you name it.  They were the greatest of girlfriends.  In June of 2010, Cassie's family decided to move back to their home in Ontario.  To my young 10 year old, that might as well have been across the world, not just across the country.  Andrea cried for a long time after that.  The girls have stayed in touch by phone (yes, we've paid more than enough in long distance charges) but it's not the same.

Last night, after a conversation on the phone with Cassie, Andrea fell into a funk.  She was gloomy and unhappy.  Around 10:00 she came to me crying about how much she misses her friend.  We had a long talk (why do these happen late at night?!) and I told Andrea that she needed to let go of the ultra-sad feelings she has about Cassie living so far away.  I reminded her of the friends she has close by and although they will never BE Cassie, they are still wonderful girls to have around.  I encouraged her to call other girls that she knows through our homeschooling lines and do what she can to play with them.  I reminded her that Cassie will always have a special place in her heart and no one can replace that special friendship they had.  I also had to encourage her that there ARE other kids who live much closer and can be super friends as well.

Thankfully, she went to bed happily thinking about her upcoming birthday and the plans she was creating to celebrate it.

Cassie & Andrea

Fun Monday

I took the kids on an impromptu trip to an outdoor pool today.  What a great way to spend the day!  We all came home sun-kissed and some of us a little pinker than others.  I remembered to put sunscreen on everyone except Joshua.  Poor guy has quite a sunburn.
One of the pool rules is that in order for the kids to play in the deep end and use the diving boards, they must swim a length of the pool without stopping.  This, is not Joshua's forte.  He tried {unsuccessfully} twice and I managed to encourage him to do it once more.  Thankfully, he did it and was able to have the freedom that his sister and cousins did.
Arianna was happy to keep a life jacket on which meant I could just follow Sarah around.  Arianna also surprised me by doing a flip off the diving board!  Wow, she's sure gotten braver over the years!

It was (at times) exhausting to keep an eye on Sarah.  She has no perception of danger or depth of water.  Also, with her balance issues, I had to ensure I held her hand at all times.  Thankfully, she was just as happy to spend lengths of time in her stroller eating snacks.  That gave me a few minutes here and there to watch the older ones and let my guard down a bit.

Overall though, it was a fantastic day!  When we got home, I somehow managed to send all three older kids to both sets of grandparents which meant I had the evening to myself!  Oh, sweet alone time!

New Gadget

On my blog now.  You now are able to receive my blog posts via email.  On the top right hand corner, you can see the link to add your email.  I don't have access to that information, the blog updates are simply sent to you automatically.  If you prefer, I can add you manually to receive them.

Release

I haven't blogged in a while lately and despite my wanting to write something... my mind came up blank.  I haven't *really* started school, we have no news about Sarah, and life in general just seems to be chugging along.  Last weekend, I attended our church service and shared these thoughts with Doug:

After months of stressing, worrying and crying about the concerns for Sarah, I finally released my struggle and gave it back to God.  It was at church one evening and I don't remember the speaker or even the message but I came to the realization that I can't and don't need to deal with this on my own.  That this is where God wants me to be and I am doing the best I can for my little girl.  I will {try} to wait patiently for the appointments and when those days come, do my best to lean on my Father to hold me up.  I imagine and expect many tears to fall yet.  I'm just one of those people.  I cry lots.  I suspect I'll also have angry days as well.  

Now, that being said, I still struggle a bit because I am still the parent and will have to help administer the tests... no one will take that difficulty away.  I will be the parent who watches her *baby* fall into a deep slumber to prepare for an MRI.   I will hold her bitty arm so that we can get the necessary blood work done.  I look forward to when all this stuff is done and we {hopefully} will get some answers.

Romans 5:3 reminds me that "We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance." 

Wordless Wednesday

08.24.11

Today

Thankful Thursday (08.18.11)

• my husband of 14 years
• my four amazingly wonderful children
• God's forgiveness, mercy & love
• the fabulous volunteers who hang out with my kids at VBS
• my in-laws and their generosity (love their garden!)
• friends~ both local and across the US
• my health
• the tools that make my life just a bit simpler 
• life

School Pictures

As I enter a new year of homeschooling I had thought about how public schools all get photographers to come in and take pictures of the students.  Although my kids were in a hybrid program last year, and did get their photos taken, I {personally} thought I could do better.  And I did.  So this year, I am offering homeschool families the opportunity to get their kids' pictures taken.  I don't know if anything will come of it but I thought I'd throw it out there!

Jam Day

I spent the better part of yesterday at my mother in law's, making freezer jam.  We made five batches and each batch yielded seven jars of jam. 

 Picking through the fruit

 Off to get some more raspberries!

 Even Sarah got in on the action!

 The mixture sitting and waiting to be poured into jars.

Thirty-five jars of jam!  And 7 were left at my mother-in-laws.

 After four hours, Grandma and Sarah needed a rest!

A delightful spread on toast this morning!