Category: Xandra

Day 10 – Part 1 – Leaving Arkansas

Today’s a 2 part-er because we had a whole adventure before we even left the property!

We woke up at 7am with the hope of leaving by 8am. Okay, let’s be real…I figured we’d probably pull out by 8:30am and we most likely would have, if not for that little issue with a tree.

When we pulled in and parked, we didn’t necessarily think 100% through the leaving situation and although it was a little bit awkward to park: it was downright exciting to try and get out.

Getting ready to leave wasn’t the issue. It was actually hooking up the trailer and navigating out of the driveway that took a little…….creativity!

Good thing we’re creative.

The driveway comes in from the road. The house is on the left side and at the end of the driveway is a garage. We parked parallel to the garage. There is a small center island that you can pull around and keep driving – now you’re on the right side of the driveway and then it connects back to the main driveway. On the right side of the loop, just passed the garage is a bit of a drop off AND to make things more fun…a tree from the center island area tilts slightly over into the road, so while a car or even a truck might get through – a trailer would not.

While Xani and I supervised the entire “situation”…Jon and Jimmy (Xani’s father in law) did the actual heavy lifting or driving or navigating.

Okay. First issue was actually hitching up the trailer to the truck. Remember the previous mentioned drop off – we found it. The space between the trailer and the edge of the driveway didn’t allow for a lot of navigating. Fortunately, we also have 4 wheel drive and were able safely get all 4 tires back on the driveway. We got the trailer hooked up and moved onto the second challenge of backing up the trailer enough so that we could exit on the left side.

The issue was…..well, let’s see, we had multiple trees to navigate around, a giant drainage hole to not fall in and the center island to avoid. All with a 25 foot trailer connected to a long truck. Epic. They managed to avoid the hole but a tree jumped out and grabbed the trailer. Rather than rip the drain spout off the trailer, they decided to move the tree. Ya! Move the tree. I was surprised they were just gonna cut a tree down but it’s even better than that.

In between the tree they moved and the tree they cinched to, you can see the edge of the driveway and the drop off on the right hand side. Not a lot of room to navigate. In the next short clip, you can see the “filled in” drainage hole they successfully avoided.

It took some effort to get the strapping unhooked from the trees.

Put your back into it, babe!

We said good bye to Mac and Xani and Jimmy (Dalton was already at work and missed this adventure) and hit the road by 9am. A little later than planned but with a great story.

We stopped to fill up the tank and headed out on the 7 hour drive to Bay St. Louis, Mississippi.

Day 8 – Arkansas

It weird to think that it’s been over a week that we’ve been “on the road” and that we’re not even half way through this adventure. It’s been a lot of fun, so far; and we have so much more planned!

It’s another gorgeous day. Not too hot but gloriously warm and sunny. This is where I sit in the sun in the morning and drink my coffee. I look out at the trees and every day the green fills in more and more; and it gets even more beautiful. This morning the woodpeckers were out. There were a couple of them flitting through the trees, pecking away. I also saw the brightest red bird that I’ve ever seen. No idea what it was; but it was sure pretty.

Jon made waffles. These guys have a fancy “double waffle maker” and we’re gonna have to get one of those. We only have a single maker and this speeds up the process significantly. Jon made “Dynie’s waffles.” We stopped by their house one day – 20+ years ago – and Dynie was making waffles and they were so delicious that Jon asked for the recipe. He’s been making them ever since.

Mac was sure that Xani was gonna share; but she didn’t.

After breakfast, I went out and set the trailer in order. I love trailer living because everything has a place and if you put it back where it’s supposed to be, then everything stays neat and tidy. I really like neat and tidy.

Front of the trailer

I did a load of laundry and put that all away too. After a week, we had one load and I’m a bit surprised at how many pairs of socks the 3 guys go through. I don’t often wear socks as I love my Birkenstock sandals but they wear at least a pair every day and sometimes more because once you’ve taken the old pair off, you can’t possibly put them back on! (Insert eye roll)

Back of the trailer

After the trailer was tidy, I grabbed the crochet dishcloth I had started the other day. I just needed to add the scalloped edging to it, so it was the perfect “sit in the sun” project.

Jude came out and asked if I want to shoot the BB gun with him. So we set up a table and some pop cans.

We hit some and missed some, and even hit the table and the bucket that the cans were in. I’m pretty wobbly and have a hard time holding the BB gun steady enough to consistently hit the cans. I like it when they are clumped together as I’m more likely to hit at least one of them, then. Ha!

Jon came out and joined us for a couple of rounds.

The bugs started to get annoying about this time but when you’re in the zone, you adapt, right?

Xani and I used to go together and get our nails done and I hadn’t had time to get them done before we left, so we booked an appointment at her nail place here. Little mother/daughter bonding time.

Jon sat in the sun while we were gone. It’s really nice to have some downtime moments, especially after the past crazy years.

I finished the edging on my dishcloth while sitting in the shade, in a rocking chair on the back porch.

Then I grabbed a glass of sweet tea and headed out the front to sit in the sunshine.

Can you see my little frog friend? I love the sound of frogs chirping. This little guy has some serious camouflage going on. I only noticed him because he hopped. I have edited the photo like crazy to make him stand out a bit.

Dalton’s dad asked if the boys wanted to drive the tractor and Jude was ALL over that. That boy would thrive out on a piece of property somewhere. But maybe somewhere with less ticks!

Jude had fun driving and Siah had fun riding. He only hit one smallish tree.

Jon made his ribs for dinner and while we waited for them to finish up, Jude and Xani and I played a game of Trouble. Xani won and I lost!

After dinner, we sat out on the back porch and chatted a bit. It’s been so lovely getting to know Xani’s new family. They are lovely, Lovely people. She is so well loved by them and I’m ever so thankful for how kind and caring they all are.

We headed to bed, did another tick check, and settled in for a good night sleep. It was another fabulous day and I’m so grateful!

First Official Week of School

Last week was a tough one as we had an extra bonus amount of work to “fit in” to our regularly busy schedule, with elections printing (Thanks Snap Election!)

Siah woke up with a cold on the FIRST DAY OF SCHOOL and was SO DISAPPOINTED. When I asked Jude what we were going to start our school year with, I was pleasantly surprised to have him say he’d like to start with Algebra.

We did not do as much as I had planned in my fairy tale dream world of perfectionist homeschooling; but we did get some done and for a child with PDA, I figure that’s pretty freaking good. Considering that I was busy working 14 hour days all last week.

As this week starts, Siah is still home with a cough but on the mend. Xani’s covid test came back negative – as we breathe a sigh of relief and curse whatever virus has invaded our home.

Jude’s School Day Reporting

I stayed home, today, and we actually worked through some school work with hardly any fussing. We are still acclimating to “school” and are easing into things. We managed to hit Math, Reading and Comprehension, novel studies, PE and our Conflict Resolution and Peaceful Communication Course. All in all a good day.

Executive Function

Ya’ll I’m exhausted. It’s been a week FILLED with one thing after another after another and while none of those individual things are critical, the combined weight is enough to drag me under.

So today, I’m going to share a post that I read yesterday. I think awareness is so important. You can’t truly understand something, unless you’ve lived or experienced it.

BUT……you can learn. You can try to understand. You can lay personal bias and judgment aside and really seek to understand.

Jon and I have said for YEARS, that our kids have the capability to be wildly successful in life but that they would totally benefit and need a Pepper Potts to administrate things for them.

Those of us without Executive Function Deficits can often organize and structure our own lives. We can juggle all the balls, even the boring ones. But for those of us who have reduced Executive Function, certain tasks can seem insurmountable.

It doesn’t mean that people with Executive Function Deficits are stupid. They may be “Different, but they are not Less“. I will harp on that until the end of time. It’s so important. We all have strengths and challenges. It’s a part of being human. we should never belittle others for their challenges……EVER!

Here is link to an incredible article by Mair Elliot on Executive Function and how frustrating, and unpredictable it is to live with Executive Function Deficits; how much effort is required on a daily basis, and how it can affect quality of life even though the individual may be intellectually capable.

Please read this article with the intent to learn and understand.

Different, not Less!

Pain, Coping and Recovery

Today is a special day. Five years ago today, my sweet Xandra decided to make a change in her life.

She told us that she wanted to talk to us. We knew she’d been struggling for years with depression and anxiety.

It’s hard not to when your sister was diagnosed with cancer, your baby brother was born, your brothers have autism and you’re unsure how to deal with it all. You don’t know if you should bear the weight of everything because your mom and dad are overwhelmed. You don’t want to burden them any more, but you still have needs.

Xani told us that she’d been cutting for a year. That she’d been using this self-harm as a way to cope and alleviate the emotional/mental stress that she had been feeling. She showed us her arms and her legs. She wanted help to stop cutting and knew she couldn’t do it alone.

I was in shock.

She was so badly wounded. Her physical body was a outward representation of how wounded and how much pain she felt internally.

As a mom, it’s a horrible place to be in. To try to hold it together and be loving and compassionate and understanding.

To offer unconditional love and acceptance to the hurting person in front of you, while at the same time feeling absolute helplessness to know how to move forward.

Wondering how to get your child help, to give your child help.

Feeling terrifying rage at the person who mutilated and hurt your child, all the while knowing that it was YOUR child who did this to themselves. Knowing that they must have felt unimaginable emotional and mental pain to have even considered this as an option.

The dichotomy of emotions was huge.

I’d love to say that we had a well thought out game plan. That we rocked her recovery. But the the truth is……this was Xani’s journey.

She determined that she didn’t like where she at and that something needed to change. She reached out for help. She was open about the pain she had been and was currently experiencing. She recognized and identified the harmful things she was doing to cope with and escape her pain. She chose to walk away from those harmful coping mechanisms. Did she struggle on her road to recovery. Absolutely! But she reached out for relationship and community when she felt tempted to cut. When she felt the pain and stress rising up internally – instead of hiding and coping on her own, she reached out. She brought her feelings out into the open and allowed us to walk with her.

We……..we were there. We were available….to love, to accept, to champion, to talk, to just BE there.

Today, I’m SO VERY thankful.

I’m thankful for so many things. I’m thankful for this incredible woman that I have the honour to call my daughter. I’m thankful for courage and her strength and her vulnerability. I’m thankful to be on this side of this journey. I’m thankful for the perspective that this journey gave me. I’m thankful for the opportunity to love and accept. I’m thankful for the knowledge that we as people experience pain and look for ways to treat the pain and cope; often how we “cope” is in unhealthy ways….but that doesn’t make us bad or unloveable or unworthy; it just makes us human.

We are all worthy of love and acceptance; not in spite of who we are, but because of who we are.

ps. I have Xani’s permission to share about her journey. But I’ve also shared my perspective of it because this is my life, my journey and my perspective.

Moving Forward The Morning After

So I posted last night…..

I was tired and emotional and probably if those two factors had not ganged up on me….I may have filtered myself a bit more or even just made less typos…..maybe….maybe not?!?

I don’t know that this morning brought any new clarity with it.

I woke up with a killer headache……….at 5:30am.

Yah, it’s been a long day already and it’s only noon-ish. Did not get back to sleep after that. BLERGH!!!!

On a side note….It’s gorgeous outside.

That is the view to my right….

and this is my view straight ahead…..

She’s not supposed to be on the couch….but I haven’t exactly kicked her off.

It’s the last day of school before the Christmas Break….and probably my last quiet (ish) day for the next two weeks.

So, I’m taking advantage of it. I’m sitting. The house is a mess, and I made Judah pancakes for lunch. He is currently trolling Netflix….I believe Ninjago is the show of choice at this exact moment.

I’m currently staring at my Christmas Tree trying to figure out what I’m thinking, but again with the 50 million thoughts going in 50 million directions.

I had a few people send me private messages of encouragement and those were so nice to hear.

I wonder if it’s about perspective.

I’m in the middle of it all. From my position, I look around me and I see children who are unique and amazing and challenging in their own fantastic ways. I see the screaming and the bickering and the squabbling and the challenges to get them to do their chores and take care of their responsibilities. I see their shortcomings and I want to work with them to strengthen those areas while at the same time encouraging them in their strengths. I see these amazing individuals with really great hearts even in spite of all the challenges that we’ve faced individually and as a family……. But it’s a constant effort to keep these 5 bodies moving in a forward direction.

We were so isolated over the “cancer years” and before then….doing almost anything with Jeremy required HERCULEAN effort and sometimes it was easier to just not do anything. Again…..very isolating.

It is hard when you’ve had it said to your face that people can’t be friends with you because your child is too difficult. Or to hear from others that you shouldn’t subject your children to people because they are too much effort to have around and be around.

Just typing both of those down….I realize how brutal those two comments are. I mean, I know how brutal they are….I’ve lived though both of those said directly to my face and more. But I can’t imagine saying those things to someone…..EVER!!! I love children. I especially love the challenging kids. The ones that make you think and keep you on your toes. The extremely smart kids that say the most incredible things but require a little more attention and focus……I love the regular kind of kids too, but somehow, the ones that people seem annoyed with or bothered by….the ones that talk and talk and talk and talk and never shut up……I LOVE those kids. I want to go out of my way to make sure that they feel special and included and NEVER EVER a bother or an inconvenience….

I get it. I know how much effort it is. I live it…..EVERY. SINGLE. DAY! Jeremy has not been the easiest child. He requires some effort. Well, he requires a lot amount of effort. So does Josiah in a different way and Judah….well, he’s a 3 year old. What 3 year old doesn’t require some attention and effort. My boys require effort……I know this. I guess, it would just feel really good to feel like others “want” to be with my kids. Do you know what I mean? I think that in spite of their particular challenges or maybe even as a result of them….that my kids……all 5 of them are pretty amazing. I’d love to feel like others felt that too and wanted to spend time with them….not cause they HAD to, but because they WANTED to.

So, to those who have said something…..THANK YOU. Really! I appreciate it more than you may ever know.

I’m not sharing this in the hopes that people will “do” something. I am just trying to unravel some of this mess inside myself. Part of that is dealing with the hurts and wounds that I have or have gotten.

I realize that I’ve been hurt and I definitely have some sore, open wounds when it comes to my kids and how they are perceived and received.

And this OBVIOUSLY colors how I hear people comment on my kids.

So the school wanting to help Siah….turns into….HE’S A PROBLEM…..which I can’t even fathom….cause he’s freaking sweet kid who can read and write and wants to please…….and then I go…WHAT….WHAT do I even do with that….

How could be he a problem…..which, when it comes down to it….that is not even the issue at all.

He is a great kid….who has some quirks and may require “some individualized strategies” to help him succeed and how do we (parents & school) as a collective team help him to achieve success?

So we met, and talked through some things and I think I have a better perspective. I think we are more on the same page than I “felt”.

Which is great.

Not that the whole things doesn’t still stress me out….but the Principal….she’s an amazing lady, encouraged me to trust them and to just “plug my nose and JUMP!”

I believe this school and these people are amazing people…..I believe they truly care about Josiah. I really do believe that they want the best for him. That they want him to succeed. And so…..I jump.

I’m scared.
I’m nervous.
I’m sure I’ll need reassurance again.

But…..

I want to trust.
I want to believe.
I want to be in “community.”

and so….

I carry on…

one step after the other…..hopefully in a forward direction. 🙂

Wrap Up – FINALLY!

I’m finally getting to the last day of our Wish Trip and while I think that no one really cares about our flight home, there were enough things that I want to make note of and remember that even though it was over a month ago, I’m going to go ahead and wrap it all up.

We had to have our luggage out in the hallway on the Friday night by 10pm or else we had to carry it with us and let me tell you, luggage for 7 people….you don’t really want to be carrying that around especially when you have two adults, one weak teenager, one mostly helpful teenager, a curious child with ADHD, a useless but fun loving 4 year old and a 30lb baby! It’s enough work just to get ourselves from point A to point B without thinking about and wrestling luggage as well.

The weather was bad the whole night and the boat shifted and pitched and rocked. While it was the coolest feeling, I was also awake to feel it and the awake part of that equation…not so cool!

On Saturday morning, we had to be down in the restaurant for breakfast by 6:45am. We made it there by 6:50am and so that’s a win in my books!

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We were TIRED! See the CRANKY baby! Cranky babies are fun to travel with, NOT!

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Jeremy was pretty sad that the cruise was over and he whined and moped his way through breakfast.

After breakfast, we were scheduled to disembark at 8am and so we lined up and eventually got off the boat. We went through the cruise security, picked up our luggage and got onto the bus to head back to the airport. We got to the Airport around 10:30ish, needed to re-pack a few things and then attempted to check in for our flight.

Unfortunately, we were not allowed to check in until 4 hours prior to our flight and so we needed to waste some time. Yup, our flight wasn’t leaving until later that afternoon and WHEE!!!!!! we were hanging out in the Orlando Airport OH THE JOY!

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It had been such a good trip and at the same time we were so ready to go home.

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We walked around a bit, we hunted down some gluten free food, we looked through the stores, we walked some more….and finally the time was close enough that we could head down to our gate.

I had really been hoping that Judah would stay awake until we got on the plane and then sleep the whole first plane trip but it didn’t work out that way.

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Siah was done by about this point and fortunately, the people that were all around us had also been on the cruise, with children, and completely understood Siah’s limp frog routine on the floor….fortunately it was a fairly quiet performance and so we just left him to have at it.

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We waited until everyone else had boarded before we got on…I figured it would help (everyone) if we weren’t on the plane for an extra half an hour.

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Judah woke up about half an hour after the plane took off but Siah had HAD it and he slept HARD for most of the flight from Orlando to Denver.

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We had a two hour layover in Denver and seeing as Jon used to work in the Denver Airport, we went to a little taco stand that he knew of….the food was very yummy and between eating and looking for souvenirs, the time flew by fairly quickly. Pretty soon we were waiting at our gate for the flight to Vancouver…

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The flight was just a short flight and there was no movie planned but when the flight attendants heard that Angelica had been on a Wish Trip, they wanted to make this flight home special for her. They showed her the movie listing and got her to choose a movie as the in-flight movie. That was pretty fun. Towards the end of the flight one of the attendants came up and asked if Geli and the kids would like to see the cockpit after the flight landed. Jeremy and Geli were really excited about that and so when we landed and everyone else had left the plane, the pilot brought Jeremy and Angelica into the cockpit…

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It was a pretty neat experience…

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And a great way to end the trip.

Jon’s parents met us at the airport and drove us and all our luggage home.

We got home, dumped everything inside the front door, threw pajamas on everyone and jumped into bed, so thankful to be sleeping in our own beds.

It was an amazing trip and we were so thankful to have been blessed by the Children’s Wish Foundation. This is and was truly the experience of a life time.

Ambleside

Last Tuesday we woke up and it was just another day.

This summer has been a bit of a bummer. It has not gone exactly how we had planned or expected and while nothing terrible has happened, it’s not been as relaxing as I’d hoped!

First Beach Experience?

Around 9:30am, I decided that if the kids and I could get the house cleaned and packed and ready to go by 11:30am – that we’d head out to the beach. At this point, I still wasn’t sure which beach I would head to as they are all about an hour away from us, but I was determined that we were not going to just sit at home and do nothing for one more day.

The kids were pretty excited and we managed to get everything ready and done just after 11:30am and so off we went.

Arrival

As I pulled out of the driveway, I was still unsure about where we should go…I was contemplating 3 different beaches…White Rock, Spanish Banks and Ambleside.

In the end, Ambleside in West Vancouver won out mostly because I could park and be on the sand in about 20 steps and with 5 kids in tow and all our gear – the close proximity to the beach, the parking spot and the bathroom were key factors in my decision.

Toes

Traffic was NON-EXISTANT and we made it there in just under and hour. The weather was not AMAZING, but neither did it suck. It was one of those days, where it was cloudy, but there was still the possibility of getting a burn if you didn’t take the right precautions.

As soon as we hit the sand, the boys were gone, headed straight for the water. Jeremy stopped long enough to point out a good spot that he figured I should put the blankets down on and I agreed, it was a pretty good spot.

In the Water

We laid the blankets out and put the baby on them and he instantly crawled the edge of the blanket and picked up handfuls of sand and hucked them ALL OVER THE BLANKETS! At that point, I moved him over into the middle of one of the blankets and then took possession of that blanket. The girls shook all the sand off the other blanket and ATTEMPTED to keep it sand-free…….between the baby and the 3 year, it was a losing battle. I didn’t even try to stop him from loading up my blanket and to be honest, I just didn’t care.

The kids played and played and played and played.

Headed to the Water

The weather was perfect….warm enough that you could just wear a tank top, but cool and cloudy enough to keep just about everyone else from coming to the beach.

The kids tried to go in the water and the girls went in past their waists…..crazy kids. Josiah went in but decided that he didn’t want to go in, but then fell in and so that was that.

He came up and got a towel from me but from that point on, he was a sandy mess….it was…..AWESOME! sort of….

The kids were playing so nicely together and except for the occasional squabble between Jeremy and Josiah, it was the best couple of hours that we’ve had in a while.

Working Together

I was able to just sit and then every once in a while retrieve Judah and bring him back to the blanket….and then he’d start crawling back towards the water again stopping every now and then to pick up some random object and put it in his mouth.

The kids splashed in the water, made a sand wall, dug a hole, buried Jeremy, and played on the playground. We ate lunch and had snacks and went to the bathroom and the only mildly upsetting time was when we lost Josiah for about 90 seconds. He had come back with me (from the bathroom) and was right behind me. I guess, when we walked over the cement wall and onto the beach, he stayed on the wall and walked back along it towards the bathroom. I made it back to the blanket (which was about 10 feet away) and sat down. Talk to the girls about how the baby was when I was gone, turned around and Siah was gone…..Xani and I ran around like chickens with our heads cut off and fortunately, the lady next to us spotted him on the wall back by the bathrooms…..I had a short little chat with him and after that, he stayed pretty close.

In the Hole

The biggest downside to the day was when Jeremy decided to not feel well about an hour before we had planned to come home. He was complaining of a headache and an upset tummy and stopped playing, wrapped his head in a towel and lay down on the blanket. Then he wanted to go and sit in the van and was moaning loudly about needing to barf.

Downtime

After that, We packed up pretty quickly and headed home….unfortunately, the traffic was just starting and we had about an hour and a half drive from West Vancouver back to Langley. FORTUNATELY, Jeremy slept the whole way home and that seemed to help a little. He never did end up barfing (Thank God!) and by the next day he was 100%, so who knows what his issue was????

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It was an awesome day and we will definitely be headed back there before the summer is over.

If you’re interested, you can see all of my photos from our Ambleside Adventure by clicking here!

Happy Birthday, Xandra!

It’s your day today, sweet girl.

Teenager

You are officially 13 years old today. I find it hard to believe that the years manage to fly by so fast and yet….I remember the day your were born…..I remember being told to go to the hospital by my Dr and then being told to go home because they were crazy busy…..so I went home to sleep for a couple of hours and then……then you were here!

You were such a cute little pixie, with such white blonde hair. I had no idea who you were or what you’d grow up to be but I was so excited to get the opportunity to know you and love you.

And love you, I do!

You are so very wonderful! You are such an amazing daughter. You are a loyal friend. You love so intensely. You feel so passionately. You are such an incredible person.

This has been such a tough year for all of us and you ave not walked away from this year without having been touched by cancer and it’s side effects. There are so many listed side effects of the cancer treatment, but you don’t see a lot written about the effects experienced by the family. In your intensely passionate way, you have felt so many of those effects in such a deep way. We’ve made it through a whole entire year.

Your entire 12th year was consumed with cancer and it’s treatment…..and yet….you were such a light in a dark time. It’s not always been easy but we did it.

Grade 7 Grad

Grade 7 Grad Dress – made by Nana C.

You have been a HUGE help to me through out this last year. You have helped out with the boys and with the housework and with meals…..you have just helped out so much! I am so thankful for your loving, kind, generous, giving spirit.

I believe that you’re thirteenth year is going to be the best one yet.

You’re headed into High School and I’m so excited for you. Just keep being yourself. You are so unique and as long as you stay true to yourself, and just keep being the amazingly friendly person that you are, you’ll do okay!

I’m so proud of you, my sweet Xandra.

So Pretty

Happy Birthday, my love!

Love,
Your Momma

Tuesday Morning Update

Well, we are still here. Angelica’s counts have been coming up VERY slowly. The good folks at BC Children’s want to make sure that when they send Angelica home, she won’t end up getting sick and having to come right back… They want her immune system to be strong enough.

Its hard though, because Angelica is not sick. She is completely healthy. The concern is not about her current health, but her immune system strength. It feels so frustrating to be sitting in the BC Children’s Hotel and just hanging out, knowing that Patti could really use a lot of help at home, and not being able to go home and help.

Alexandra turns 13 in two days and has a big party scheduled for tomorrow. We should all be at home today and helping to plan the party, but instead we are waiting to hear from the doctors to find out if they are going to “risk” sending her home.

So please pray that we get to go home, that Patti doesn’t stress too much about the party, and that Alexandra’s day turns out fantastic tomorrow.

Jon