You might know that I love birthdays. I like making the day special for the guest of honor, including a cake, decorations and a special dinner. Due to some planning conflicts, we finally had a family gathering to celebrate my newest teenager with as much family that could make it. She loves Harry Potter stuff. She's read all the books at least twice and some three or more times. Her bedroom walls are lined with posters and a calendar. The works. So, that meant that the party was simply going to have to be HP themed. Looking on Pinterest, there were oodles of fancy cakes that were well beyond my level of cake making. I did find one that I replicated as best I could.
Yellow and red for the Gryffindor colors.
I think it turned out well.
Some of her collection...
A cape that I had sewn, the scarf was knitted by Grandma and Joshua bought her the Horcrux.
Thirteen years ago, when Andrea was born, one of the first thoughts of hearing that she was a girl was that I could do her hair. I loved the thought of curly bows, pony tails and braids. By the time she was 10 months old, I was able to put her hair into two ponies and curl them a bit. I'd add ribbons or barrettes... the whole deal. Arianna was born almost four years later and although her hair was thinner, by the time she was a year, I could put her hair up in little clips.
Then Sarah was born. She was born pretty much bald. Looking back, she really didn't grow her hair till after her 4th birthday. Consequently, she hasn't had the exposure to having her hair done like her big sisters. Now that her wispy hair is growing out, I would LOVE to put it in a clip or little pony tail. Do you think she will have anything to do with that? Not. A. Chance. And it bothers me. I wish it didn't, but it does. Last week I really wanted to put something in her hair to get it out of her face and I'm embarrassed to say that I turned it into a power struggle. She won. And went to church with it all astray. She doesn't care but I do. I guess I need to let it go. Because I let it get to me, I was in a frustrated mood all day. This week I have a friend, who is a hair dresser, coming over to the house to help me figure out Sarah's hair. It is so thin and fine and I'm not really loving the mullet-look. I'm hoping that with a professional's help, we can turn her hair into something that doesn't need hair accessories but still looks cute!
A new church. It's been four weeks since we started attending a little country church and I feel such a wonderful peace about it. The people have welcomed us with open arms and we are enjoying a smaller church setting.
I love my Tuesdays and Thursdays because I have 2.5 hours to focus on the kids' school while Sarah is taken care of. I know she is safe and having a great time which mean I don't have to worry or wonder about her.
I love my online blogging friends. Other moms who have special needs children and really understand some of the ups and downs of my days.
This post is late so now I will say I am thankful for weekends. Joshua has booked tomorrow off so we'll be able to hang out as a family and (finally) celebrate Andrea's birthday with other family members.
Since most mornings I am up around 6:00, I am thankful for coffee. I like it sweet and creamy and it's a wonderful way to begin my day.
Philippians 4:6 - Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. I am so thankful for this promise. I still tend to get caught up in thinking I can fix or deal with everything on my own and I am grateful that I can lean on Him over and over.
As I've mentioned before, Joshua's schooling has taken a different twist. He's gone from a very traditional approach to being aligned in Math, Language Arts and Social. It's been a rough couple weeks as the two of us are learning an entirely new computer program, new teachers and the biggest thing: deadlines. He's done a few quizzes and last week handed in a math assignment to be marked. He could receive help from me as needed (we are still HOMEschooling) with the intent of doing the work on his own. I received his marks in an email today and I am SO proud to say he earned a 95%!
I was never a really smart kid in school and so to have a child who has a 85% average in Math and an 80% in LA is enough to make me cry with pride. He's learning to apply himself, he's figuring out studying and test taking skills and I think he will do great!
I was excited when I received an invitation from Kelli, who blogs at Not Just Anyone, tagged me in a "6 Things About Me" post. I was quietly thrilled because my name came up on someone else's blog! I hope you'll check out her blog after you've read mine.
Is this how you imagined your life would be?
Yes and no. I knew that marriage and a family were going to be critical part of my future but I don't think I really ever imagined my life with teenagers or a daughter who falls under the "special needs" umbrella. I grew up playing with dolls and always pretending to be a mom but as you might know, dolls seldom get past the imaginary age of 3 or 4. As my first two kids approached their preteen years, I was entering a whole new parenting level that I knew very little about. Thankfully they didn't morph into teens quickly and we've all been able to grow together. Sarah has mild cerebral palsy, microcephaly and is globally developmentally delayed. No little girl pretends her doll has disabilities or delays. Now that I'm living this life, I'm dealing with it one day (or even one hour) at a time. My children are my greatest blessings and I love each one of them with all my heart. So, it's not how I imagined my life to be but it's not something I'd trade in either.
What's your drink of choice when out with girlfriends?
That's easy, coffee. Always coffee.
How did your blog come about?
It started in 2007 when I would journal about our holidays or the kids' birthdays. I think it really took off in 2011 when Sarah's diagnosis' started to really come in. My blog was my journal where I recorded every medical visit, test and result. It was my place to share my joys, frustrations and tears. I needed the blog to keep track of dates and things that I'd learn about Sarah. I love blogging. It's my outlet and it helps to organize me.
What do you love about yourself?
Doug's traveling has made me become fairly independent. I am confident that I could handle pretty much whatever when he's out of town. Joshua and I were even saying that between the two of us, we could probably change a flat tire on our own if we had to. In his absences, I have painted parts of the house, learned how to mud and sand walls, shovelled snow, mowed the lawn and even figured out computer things as needed. I like the parent that I've become as well. Although I've made my fair share of mistakes I think I'm doing an alright job with them.
If money were no question, I'd purchase...
I'd pay off my mortgage to eliminate that payment. I think it'd be a lovely thing to be able to say that our house is paid for in full. Then I'd take a month long trip (via airplane) to visit with friends in Alabama. Really, I'd go to Alabama.
What's your biggest struggle in life?
Almost every day (and sometimes more) I have a brief moment of being sad for myself and Sarah. I suppose you could call it a "feel sorry for myself" kind of party. I usually can pull myself up and move on in a short amount of time and I try hard not to dwell on the negatives but rather take joy in the positives. This is a struggle because it takes a concerted effort sometimes. To ask God to "grant me the serenityto accept the things I cannot change;courage to change the things I can; and wisdom to know the difference." I can't change Sarah. I can't force development on her. But I can do my best to encourage, support and teach her to the best of my abilities.
Now I'm supposed to chose three other bloggers to share as well so I've invited Joy, Sylvia and Michelle to share about themselves!
Pick 6 to answer for yourself:
1. Is this how you imagined your life would be? 2. Name one good deed you did that went unseen. 3. What’s your drink of choice when out with girlfriends? 4. How did your blog come about? 5. Name something you’ve learned about yourself that has surprised you. 6. What hobbies do you have that you don’t mention on your blog? 7. What do you love about yourself? 8. If money were no question, I’d purchase… 9. What’s your biggest struggle in life?
Every year around this time in September, my contract with FSCD comes due for renewal. Each year now, I have had a new social worker. Since I only see them once a year it's not a huge deal but it does mean talking about EVERYTHING all over again. The first one I had moved on so I was "given" someone else. Now whether it's right or wrong, I just didn't feel like this person really cared. They were very business like and I didn't have a good feeling about it. So this spring, I had put in a request for a new social worker. One specific requisite was they needed to be female. I am sure that God had His hand in placing this new person with us. She is a young parent and appeared to genuinely enjoy her job. We did start from the beginning since she didn't know Sarah at all but there were no negative comments about my parenting (as there were in 2012). I did tell Doug that these social workers are WAY less personable that the other services that I've received such as Early Intervention and Speech Assessments. Aside from a quick "hello", the social worker said or did nothing with Sarah. Certainly different. At least I felt positive after this visit as opposed to being angry at things that were inferred by the former worker last year.
Nothing in our situation has changed and so our contract will pretty much stay the same!
So here's a few things random that I'm sharing with you.
We have successfully finished week three of homeschooling. Joshua's school has taken a different turn this year as he's gone from traditional to a more aligned format. He's doing three classes online and it certainly has been a learning curve for both of us. There's a lot of figuring out with the computers and of course being accountable to someone else is new as well. I think overall, it will be a very good year. Andrea and Arianna are both traditional and we've slowly eased into it for them as well. Andrea is very independent and does all of her stuff in her room and checks in with me a few times a day.
Sarah saw the dentist last week. In case you missed that dramatic event, you can read about it HERE.
The season of summer is slowly slipping away like sand through my fingers. The other morning I had to turn the furnace on for a short while to warm up the main floor. When I get up with Sarah now, it's still dark outside. I don't mind fall entirely. The changes in the leaves are amazing and I look forward to doing our family pictures in a week or so. Fall means evenings curled up reading a book under a blanket and drinking hot drinks with the kids.
I'm glad it's Friday. This morning we went to a homeschooling picnic to meet Joshua's online teachers... to see the faces behind the computer monitor. This afternoon I had a MUCH better FSCD meeting than last year. My case worker was easy to talk to, listened to what I had to say and was really encouraging.
Tonight Andrea is going to youth retreat for the whole weekend with our church. Joshua is working all weekend which means Saturday and Sunday will be with just the two littlest girls! It'll be pretty quiet without the two big kids around...
On a daily basis I need to remind and encourage myself that it's alright that Sarah is not at a kindergarten level. Some days it's easier than others as is so many other things. Something I thought of creating was a personalized "Individual Development Plan". In the school system, it's more commonly known as an IEP or Individualized Education Plan. I felt if I changed the word "education" to "development, I would be less focused on educational learning at this time. I do understand the importance of education for her, but the typical three year old isn't expected to do kindergarten so why should Sarah?
A short time ago, I was fortunate to grab a quick breakfast with my sister without our kids! That in itself was a nice treat! We chatted for a while about some things that I could do to put in a program plan for Sarah and with some of Alicia's ideas this is what I came up with:
Sarah’s Individual “Development” Plan
Sarah’s development is in the range of a 3-3½ year old. Therefore anything we do with and for her must be developmentally appropriate.
Sarah is very easy going and very compliant. She can be encouraged to do an activity with very little effort.
She loves to play with toys, especially dolls, lego and play doh.
She has the attention span of a typical three year old.
She loves to please people and be around those she loves.
I would like to see us work on Sarah’s attention span when she is engaged in an activity. This would also include cleaning up her mess before moving on to another area. (social skill)
I would like Sarah to work on helping chose her own clothing and (other than diapers) be encouraged to do as much of her dressing as possible. Help is always there but so is supporting independence. (life skill)
Although she isn’t ready for kindergarten academics, I would like us to talk about the colours in her world. I may or may not focus on one at a time but we can use colours to describe objects often in daily conversations. (academic skill)
Possible activities and ideas:
Sorting various objects into appropriate colour piles. I have lots of small manipulative toys that would be work for her. This can also be done with the Duplo or other puzzles that we have. Books that talk about colours would be beneficial too.
Labelling her dresser drawers with pictures to indicate the clothing in each.
Social stories or story boards for getting dressed. For instance, she needs pants, a shirt (or a dress) and socks.
Stay with her for an activity for longer periods of time. If she indicates she’s done, encourage an additional 3 or 4 minutes. Use a timer on a phone or the microwave as an audible cue for her. Also to ensure she works at cleaning her mess before moving on.
Okay, I don't often go back to bed during the day. I had a really poor sleep last night and just thought I'd take advantage of the lazy Saturday by crawling under the covers in my air conditioned bedroom. It goes without saying that my pint sized side kick followed me. Of course since she slept a full 11 hours last night, a nap wasn't even on her radar. I though I'd just turn on the TV with a movie, Sarah would watch and I'd get a few minutes of shut eye. Oh how wrong I was.
Very quickly it became a game of her pulling off the covers exclaiming that "the sun is up". Despite my efforts to pretend to sleep, Sarah's infectious giggles quickly deflated my hopes of getting any rest. I was a human climbing apparatus for her and because the bed is a king size, it allowed her oodles of room to play around. A few times I tried to send her downstairs to get a snack from Doug but she'd have nothing to do with that idea. Apparently, just hanging out with me is her plan of a good afternoon. Despite the goofing around, we did manage to get in a few snuggles and I was reminded of how amazing she is. I love her little-ness, her innocence and the endless amounts of love she has for me. I really am a lucky momma!
Three months ago, I booked an appointment with a paediatric dentist who has experience with special needs kids. A big plus in my books.
Well, Sarah did not disappoint me in how she reacted to finding out we had another appointment. She began to cry before we even left the house... I didn't feel overly confident at that point. After a massive meltdown, I agreed to let her go in her pyjamas. Who cares anyhow right? She cried off and on for the 30 minute drive. I was exhausted already since I didn't really know where I was going (SO thankful for my GPS) and I felt done. I really look forward to the day that an appointment doesn't mean she cries the entire time. It is so unbelievably stressful.
After a typical wait, we saw the dentist. The tears increased in intensity and the dentist and I talked above Sarah's wails. She did look at Sarah's mouth, indicated a couple cavities and agreed that anaesthetic would be necessary to get the work done. Because she will need to be sedated, we're going to have to wait for an appointment at the Stollery which will be in March. And so begins another long wait. It will be nice though because Sarah's teeth will get x-rayed, cleaned and repaired as needed all at once.
September 14, 2013
Two things I forgot to mention:
The dentist said that there is no further harm that can or will be done with the use of a soother. Either the damage of her spaced teeth is already done or it's genetic. Joshua has teeth that have large gaps in them and he never used a soother, Andrea had a soother and has great teeth. Seeing as the soother is a crucial part of getting her to sleep, I was reassured that Sarah can still use it.
At one point while Sarah was in the dentist's chair, I saw the glazed look in her eyes that I saw before her seizure in August. Knowing that the previous one was caused by a breath holding episode, I began to rub her chest in comfort and kept talking to her in an animated voice. She did take a big breath and started crying again. For a brief moment, I was sure she was going to seize again. I'm so glad she didn't, especially with Arianna there with us.
She was born on September 10, 2000 in the early afternoon. I had slept well the night before and headed to the hospital that morning. The labor and delivery were uneventful except that my sister had to step in for Doug as he wasn't doing so well on his own feet! She was named Andrea Shirley, as a namesake to my mom who had passed away 14 months earlier.
The past 13 years have been amazing with Andrea. She is beautiful inside out and is always looking for ways to help me. She is an exceptional big sister to Arianna and especially Sarah. Being that they're only 16 months apart, she and Joshua get along fairly well also.
She has her own sense of style and I love that she doesn't let the fashion trends guide how she dresses or acts. She is confident in who she is and I'm pleased with her sense of being.
She exceeds my expectations as far as school goes and I'm very proud of how well she is doing. She loves playing piano and singing and will be co-leading a worship service this coming weekend. I'm excited to see what God has in store for her life.
She is becoming a lovely young lady and I can't wait to see what this coming year holds for her!
I have a few "favorite" places that I really like to be.
The first is in the corner of my couch with my laptop and a coffee. This is where I hang out for the first little while of my morning while the rest of my family sleeps. I savour the "me" time that I get before the craziness of my day begins.
I love being in my bed with a book at the end of the day. We have an air conditioner for the master bedroom so we can keep it quite cool. This allows me to lay under the two quilts we have and not feel too hot. I love the weighted feeling of the blankets on me.
The third favorite place of mine is at my in-law's place. I'm so thankful and blessed to have a good relationship with them as I know many people who do not get along with their spouse's family. I love sitting around the fire pit in the summer cooking hot dogs for supper. I love the peace and quiet that the acreage provides. In the winter, there's nothing more welcoming than a roaring fire in the fire place. And it feels like home.
Getting up early for these quarterly appointments isn't so bad when the sun is shining brightly and the skies are clear. I'm already dreading the drive in December when the roads will be snow and ice covered. This morning Sarah's appointment was for 9:15 and my awesome mother in law came by at 8:00 to drive into the city with me. It's nice to have someone along for company and moral support. We arrived eight minutes late due to three big accidents on the main freeway but that was ok. Interesting note: Sarah started to cry about five minutes BEFORE we even arrived in the parkade. It's always discouraging to me when she starts to get upset and we haven't even seen the doctor. She wasn't really happy again until we got in the van. The visit today was pretty short. Mostly just a check up and a look at how she has grown. Today she came in at: Weight: 32.5 pounds (31.9 pounds in June) Height: 40.75 inches (40.5 inches in June) Head Circumference: 46.2cm (46.2 cm in June)
So the deal is that she's just small and she's following her own (slow) curve. As for the seizure that happened in August, he said it sounded like a case where she scared herself, couldn't catch her breath and then passed out. This lack of oxygen caused a seizure. He said it could happen again or it might not. Generally these episodes stop around the age of six. I'm going to just keep hoping that it was a one time thing and that I never have to deal with it again.
Well, I survived. I was initially a little worried because Joshua's way of schooling is taking a 180* turn. He's going from traditional to aligned in three subjects. And he's doing them online. I think it'll be a good year of transition as he considers going to high school in grade 10 or 11. I'm not rushing him by any means but I do want him ready if he choses that way.
Andrea did almost all her stuff on her own today. She's become very independent and I'm thinking of some online next year for her as well.
Arianna did what I figured she'd do for grade 4. A little bit of writing. A little vocabulary and a touch of math. She played a lot with Sarah as well which was a nice help this afternoon.
Sarah spent her morning with "a best ever Sh'eem" who is an amazing blessing to me and my family. Shaneen loves Sarah and Sarah had a great time playing with and entertaining Shaneen.
I think overall, it was a good first day. It always takes us some time to get into the groove of things and I know that everything will fall into place over time.