present difficulties and future joy

I knew it was out before they even called me at home. I had been spending all week on the couch feeling extremely exhausted and in pain. I just could not pull myself together. But it was the third day of inactivity and inability that spoke volumes of my situation; when I felt a heavy depression descend upon me and I felt so emotional. I haven't felt this depressed in years and it surprised me, to be honest; it happened so suddenly.

I had just had my bloodwork done a few days earlier, so I was expecting the doctor's office to call me. I was hoping they'd just call into the pharmacy for a new prescription change, as they have been lately,  but since my levels are so far out (than typical for me), the doctor wanted me to come in. She wanted to determine if there was anything happening, such as, say, a pregnancy. Yeah. No. It's just my body being my body. All confused. Boo.

Dumb thyroid.

Unfortunately, the new dose hasn't helped at all. I may not be as depressed, but I still am absolutely fatigued, which means my body aches are back. Fun.

I wonder if I'll ever get past this. My Love is hopeful and thinks one day I'll be well again, but I don't share his outlook. (which is tough since I'm usually the Optimist) I just don't know. It's so easy to get into a negative mindset when things are messed up, and right now all I feel and all I remember are the many past days, weeks, where I haven't been able to accomplish anything in my day, and my history where I've struggled with this. Where I spend most of it on the couch in a semi-sleep-awake-state. It's tough. How do you remain optimistic in continual days like that?

I was reading an obituary recently of a woman who was described as having an autoimmune disease and in pain, but "she never complained or let it define her."  And no, reading obituaries aren't morbid. I am curious about these people. About their lives, their families, things that others will remember about them. Most are elderly and their lives were so much different than ours are today. Most immigrated from war-torn countries, lived during hard depressing times, struggled with loss, and their stories are interesting and importatant. One day, my life will be summerized in a few sentances. I wonder what my family will write? That I struggled with loss, but never complained? That I dealt with health issues but endured with strength? That I taught my family to persevere with joy?

I'm not feeling very joyful or strong lately. It's been a long, yet blurry, three weeks.

I was reading a post this morning on Ann Voskamp's blog, Holy Experience, titled "How the get through when you want to give up." It was actually a post written by Jon Bloom on giving thanks in all circumstances. I read it, skimming a lot of the words, but didn't really take it in. I feel like I've read stuff like this before and it's done nothing so far to help me. It's not that I don't believe it. I do. But somehow believing isn't always living, is it? So I read things and nothing changes.

But the last part has stuck with me for a few hours now. Jon Bloom says: "How do you give thanks in all circumstances? There's only one way: Jesus' way. Look to the joy set before you. Look to the joy! If the future joy Jesus promises is real and you believe Him, there is no circumstance that can steal your thanksgiving."

Yeah, I know. That can feel like just more words sometimes, can't it? But the more I thought about it, the more it made sense. I just had to re-word it.  The Future Joy he is speaking about are the promises God has given us in the Bible. Such as complete forgiveness of our sins (Romans 6:23), all of our needs provided (Philippians 4:19), one day we will be raised from the dead and never die again (1 Corinthians 15:52, 53), we will receive all the grace we need (2 Corinthians 9:8), He will complete the works He has started in us (this one gives me hope! Philippians 1:6), someday soon we will see Jesus and be with him (2 Corinthians 5:8) and be like him (1 John 3:2), we will know complete joy (Psalm 16:11 and Psalm 43:4)...and many more!

So basically, focus on the promises that He has given to us. Focus on the Future Joy, not the present difficulties. This is where you find your joy.

"Now is your time of grief, but I will see you again and you will rejoice and no one will take away your joy." John 16:22

Now, THAT is something to look forward to!

Joy Cometh

When I struggled with depression and fatigue and toddlers, I realized that my joy was stolen.  I listened to the music and I sang and I read the books and I quoted Bible passages, but I was still grasping for Joy.

As I searched for Joy, I found myself drawn to the word. The action. The desired result. The freedom that came in its release.

I don't fully have the joy that I started out with. But I am getting there and I feel I am on a good path.  I will claim that fruit of the Spirit once more and be filled and overflowing.

fall back!

Don't forget! It's Daylight Savings Time again. Make sure you put your clock back an hour before you go to bed tonight!  

As excited as I am about the idea of getting an extra hour of sleep (theoretically) I will likely waste it somewhere anyways, and I think DST is a bad idea anyways.  However, with saying that, I am happy to see that the sky won't be dark by 5pm anymore, but 6pm. Yay!

It's the Great Pumpkin!

Have a fun and safe Hallowe'en!!!

At the punchkin patch!

We haven't managed to go to a pumpkin patch in a few years (definitely not since before Eden was born), but this year I was determined to take my kids again! There is one near our house that has a kids' corn maze that we would go to, but before we could, we got an invitation to go to one with our cousin!!! That's way more fun!

We met my sis and bro in law (along with my niece), and mother in law after church and slowly made our way in. There was a haunted house in one of the buildings, but I'm not into purposely scaring myself (or being scared accidentally, really. I just don't like being scared period) so I stayed outside with Eden. I was impressed that all of the other kids wanted to go in, though. They seemed fine when they came out, so it must not have been too gruesome or creepy. (I did find out later that even though Rhys said it was "Cool!", he had his head down the whole time!!!)

After that we got onto the wagon for a hayride to the patch!  There was a tractor in the field for photos, which the kids had fun playing on.

 

 (B always makes goofy faces!)

 Let the search begin!!!

 

 

 

 Eden was so determined to pick up the pumpkin she wanted!  No matter how heavy it was! 

 That started a whole challenge for her and she wanted to pick up every pumpkin she could find. Then she had to add them all to our wagon. We had to take out 4 extras when she wasn't looking; it wasn't our intention to buy most of the patch up! She found a Spaghetti Squash that she called a Banana and added it too! (she put it inside one of the pots that tell you the price of the pumpkins. Ones that fit into a certain pot would be worth a certain amount. I don't remember what they were, though.)

After we found our pumpkins, we found that there was a hay maze too! I have always been nervous about mazes, even though they look cool and I would love to have one in my dream future estate garden, but the idea of being lost in one really makes me nervous, so I avoid those too! I was relieved (and felt a bit silly, really) when I realized the hay bales only went up about 5', so I could see over the tops even if the kids couldn't.  Oh, and they made this one easy! It wasn't as much of a maze as a pathway, with no winding wrong lanes to get lost down! Phew! The kids had fun running through it multiple times!

 

(look, I didn't get lost!)

There was also a goat pen, and usually goats amuse me, but these ones were stinky, so we didn't visit long! We had fun with the chicken coop, though. You could pay a quarter for a hand full of chicken feed, so we went through a lot of quarters! The kids had fun with that one!  There were a few holes where you could poke your hand through and feed them that way, or you could toss it into the fence. The kids were quite brave and tried to feed them by hand. Well, some did.  Abi had gloves on, so it wasn't too bad, but neither Kai nor I did. Chickens can peck pretty darn hard! I did it once but decided not to again! It startled me more than it hurt. Eden was nervous too, but with her gloves, I showed her how to hold her hand out still, but when the chicken was a bit too aggressive and started to take along her glove with the feed, it freaked her out a bit!  We just tossed our leftover feed together!

As we were leaving, one of the woman at the concession heard we were heading back to see the chickens first, so she handed us a pan full of pulled apart old hot dog buns for us to feed them with! That was a neat experience! I had never heard chickens make that noise before; it was like a coo instead of a cluck. Almost a purr. They were quite happy with the buns (I didn't know chickens ate bread!)  and we handed some out to the other children at the pens to give out too.

(nope, can't say I knew that)

It was a fun afternoon! The kids went on a hay ride, picked out pumpkins, went into a "haunted house", went through a hay maze, fed some chickens, got face painted (Abi did), ate lunch, posed for fun pictures, and made memories with their cousin and family! Yay for wonderful October days!!!

 (teehee, a gourd that looks like a duck!)

holter selfie

Here is a Gratuitous Boob Shot from when I had my 24 Hour Holter Monitor on.

Just so you know, I take horrible selfies. It's just not a talent of mine. Either I have fifteen chins, or I'm making a funny face or half of my face isn't even in it or something is just looking off. My favouritest sister takes awesome selfies. I am a little jealous.

I haven't heard anything back from my Holter (which took me one hour to drive in to VGH with two children, ten minutes in the waiting room, five minutes in the room for the guy to stick it and attach it to me, and one hour to drive home. What a dumb day!) I am going to assume that everything is okay with the results. I have no reason to think it wouldn't be.

Progression. I think.

One of Rhys' teachers, Ms. Nikki, pulled me into the classroom when I came to pick him up after school recently. She was all excited and had to show me what Rhys could do! 

She had been working with him and was eager to show it off, so she sat on a tiny chair with a board and letters in her lap. Rhys stood in front of her and picked up each letter, one at a time, and placed them on the magnetic board. When he was done, he had spelled his name correctly! He had picked up each letter, in their proper order, and arranged them after each other! By sight! Woohoo!!! 

They were both pleased with themselves!

Nikki told me how she had been working with the children on recognizing their names and learning the letters and shapes and arranging them in order to spell. Rhys is the only one who can do it!  How wonderful is that?  (he learned to recognize his name last year when he sees it spelled)  I know that I shouldn't be "too proud" that my child is quicker at this than the others, but I can't help it!  However, I was told that a few of his classmates can tell what which letters are by sight, but Rhys can't do that yet.

Nikki was working on that with him as well. She asks Rhys, "ok, do you know what this letter is?", and she points to the Y.  He looks at it, looks lost, and shakes his head. No idea.  She tries to prompt him by raising her hands in the air into the shape. He remembers her doing this and that it means something, and so he grins. But he still doesn't know what to say until she exclaims, "Whyyyyy?" with her questioning hands, and he acts it out too, repeating after her!  Very cute!  

A few days after that happened, I was talking with his other teacher, Ms. Harmony, about Rhys. I wanted to know how he was doing, since it had been over a month now of school. I didn't want to ask too soon, and wanted them to settle in first, and I even struggled with even wanting to ask at all. I'd rather they approach me if there were issues, that way if they didn't then it could all just be in my head. But I also knew that I wasn't imagining it. I couldn't have been. So it has been tough for me.

But I asked cautiously how he was doing. Rhys had already run on ahead into the classroom to join his friends at circle time with Ms. Nikki, and so I had a chance to talk uninterrupted. She said that he was doing great. He was playing well with the others, and was engaging and enthusiastic. (don't I know that! He loves to use his loud deep booming voice and yell, "HI MOM!" or "BYE MS. HARMONY! or "I LOVE YOU!"  It's like a dramatic narrator's voice!)  I was happy to hear that, and wasn't surprised. I was starting to wonder if she even had a "But..." in there.  Then she mentioned that he does have poor memory; he has not been catching on to the things they've been teaching sometimes. (like what the letters are. or colours, but I already knew that too. In fact, over our summer camping trip, my good friend and her teenage daughter were trying to teach Rhys his colours, but he was not retaining the information. Not that moment, not a few minutes later and definitely not hours or the next day. They gave up after three days.) So that is something that will have to be addressed.

She told me that there was a parent's fair coming up in Langley. It's actually the Lower Mainland Annual Toy & Product Fair 2013,  but there is an opportunity to connect and meet with child development professionals to discuss behaviour challenges, milestones, early learning, speech and language, etc., titled Child Day. (Children's Health Information Learning and Development)  She wanted to let me know about it in case I was interested, and so now I'm hoping to check it out. It is being put together in part by Langley Child Development Centre. 

I mentioned how we were referred to the Surrey Child Development Centre for preschool, but that was it, and we had chosen not to attend there due to it being in the total opposite direction of where we travel. But due to us living technically in Surrey, we haven't been in contact with the Langley one. Despite our school and our pediatrician being in that city, and most of our shopping and our church being there. Which got us into a discussion of Ms. Harmony being able to refer us to the Langley CDC, and how Rhys could use the assessment and we would benefit by having it done. We even discussed our pediatrician Dr T, and how Harmony knew her and had dealt with her before, and it resulted in a none-to-pleasing way (which I totally understood. The only reason we are still seeing her is that we have been through so much already that I would hate to have to find a new doctor just to have to go through the whole process of getting to know them, and giving our story, and going over tests again. Plus, I keep hoping that we will find something and be able to move on from her. By seeking a new pediatrician, Harmony's daughter is on a wait list, and I am glad that we don't have to do that.) 

I'm not too sure what will happen or if there is a wait list, but I filled out the form for the Supported Child Development Programme.   A lot of programs seem to end once the child has become a certain age (usually 5) and/or started attending school. So we don't know what is available for Rhys now that he is 5, but not attending the school system. (preschool doesn't count as "school" yet) But it looks like this program works until they are 18, so that is good news.  I just don't know how it will help yet. Is it like the Infant Development Program that he was in, where they did home visits monthly? Or is it like the Early Speech & Language where he went for therapy once a week, and I attended weekly night classes for a month?  I am anxious to get something going though.

I feel so frustrated with how lax it has been for him. And I'm a bit angry and sad at how he was phased out of the IDP at age three (like every child), with nothing to go on, even though he was so far behind. Michele knew he was delayed, so why wasn't anything put into place? No referrals?  Is it all due to me believing that he would "get it one day", and so I didn't think we needed to? But even if I thought that, shouldn't she be the one telling me that we should check it out, "just in case"? *sigh*  I'm not trying to pass blame, and I'm sure it sounds like I am, (I really did like Michele, still do, as she was the one who helped me out with my preemie boys for so many years) but I am just sad to think that we could be a year or two ahead of ourselves if only this was done before he left IDP.

Remember, this whole process of looking into his delayment didn't start until last year November when he was really sick and in hospital. Not even a year ago yet.

But I'm also frustrated that despite seeing Dr T for almost a year, we're really not much further ahead. Well, I guess that all depends on how you view things. After all, we can say that it is NOT WS or  FXS (although, I still admit to wondering if it is possible either of those test results were incorrect. But that could just be my desire to have an answer so we can move on. I like moving on. It's so much nicer than not knowing and waiting for something to come up and feeling frustrated.) I am also bothered that it still feels that she was more interested in his growth and weight than his development, and I wonder if she shouldn't have referred us to other groups herself. When we see her again in November, I know she will not know what to suggest for us; we're still just waiting for Genetics.

Ms. Harmony photocopied a handout that she had in her classroom on how to be a good advocate for my child. I've heard those terms before. I've been told how parents of Special Needs children need to Advocate! We need to fight! We need to be heard! It's an uphill battle!

And it frightens and overwhelms me.

I don't know if Rhys is Special Needs. But if he is, why do I need to Fight for him? Why does it have to be a struggle to get him the proper help he needs? Why do I have to prove to the ones who are working with him that he needs extra support? I don't understand that. It just doesn't sound right to me and it makes me angry to think that all these parents go to IEP meetings and come home exhausted and angry that their child is "slipping through the cracks" because of school bureaucracy.  Will I have to do this one day?  Can I be the advocate my child needs? (not WILL I, because there isn't a problem of me wanting to, but an issue of me being able to. Do I have the voice?)  But I am getting ahead of myself.

The first thing on the To Do list of Parental Advocacy is 1) Know your child's needs.

Oh good.

I don't know what they are. So far I know that he is "different", but I don't know how. And he doesn't seem to retain information the way that we all seem to.

Also on the list was "Join A Support Group of other parents with children of the same issue."

That would be helpful, thanks.

"Know who the players are, the ones who can make things happen, the ones who are the top in the fields you need to approach. (like school superintendents, etc) Learn how to write letters. Bring friends to meetings so that you can be focused and can remember what was said. Get things in writing or record conversations you have."

Are you kidding me? Oh, God, please don't let it come to this for Rhys. I don't know how to cope with that. Why do I need to have to convince a bunch of people that my child is just as important as another child and that they deserve to have the same chances?

But this is life. And it is hard.  And this is the reality many parents have faced daily.

I don't know what to do, where to go, who to talk to. I don't know what his issues are or how to get to the next step. I don't know what is in my head and what is an actual problem. I don't know how to be his advocate yet. And I feel scared that I will miss something and mess it up.

Ms. Harmony remembered that she has some ASQs in her desk. She went on a two-day conference to learn how to do these tests, but that was eight years ago, so while she can give them, she can't remember how to mark them! That may be a problem. But she is going to print some up for us. She will try to fill one out in class time and I can do it at home and hopefully that will give us something to go on. Maybe I can find someone who can interpret the answers for us!  The last time he has an ASQ done, he was 40 months old and he scored at a 30-36 month level. It will be interesting to see what it's at now. (since he fits in with the 4 year olds, even though he's 5, but is still lacking in some areas.)

So, some progression forward. I think.  The teachers see something, but nothing obvious yet.