Thursday, October 31, 2013
Wednesday, October 30, 2013
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!)
Monday, October 28, 2013
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.
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.
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.
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.
Saturday, October 19, 2013
We have a neighbour who is always helping us out with our yard. That is, I think he's "helping". That's how I see it. But I guess he could be just doing it because he's disgusted and annoyed with our lack of interest in keeping our yard perfect. (I have kids, a lot of them, and so there is always bikes and toys in our yard) He's an older man who speaks limited English as in his age his Polish is coming out more, so it's hard to tell sometimes. I try to follow along with his conversations, but it's not always easy, but I know that he's been frustrated more than a few times with us. Mostly I take it with a grain a salt and always make sure I thank him for his help. (which reminds me that I should pick up a gift card to Timmies for him this week!) I appreciates his efforts and I want him to know that.
This week he was out blowing our leaves into a pile for us, which I thought was great. So did the kids, less work for them to make piles for jumping in! However, I got the strong feeling that he was annoyed that there was this pile just sitting there, waiting to be picked up, and all the kids seemed interested in doing was playing in it! Kids these days! There were a few words of "discipline", but I didn't get what he was talking about, so I ignored it! But I thought that I had better pick some of them up to add to our compost bin.
Eden insisted on helping too! When she wasn't crying and getting angry because she wanted to use my shovel, that is. (And, yes, I used a big snow shovel to pick up the leaves. It's just easier. I'm not too sure where we got the shovel from though. We have so little snow here, so I doubt that we bought it, so it must be from our MIL! She'd get us one.) She found a little blue dust pan to use instead. We're clever like that, using different utensils for other uses!
She just needs to stretch just a bit higher....
It made me giggle. I thought it was cute that she was trying to dump the leaves into the bin, but couldn't reach, so most of them would fall into her face in the end. She still kept trying though, and that was sweet.
I love toddlers. They always want to help you out because they don't think of it as "chores" yet! That will change soon, I'm sure.
This week he was out blowing our leaves into a pile for us, which I thought was great. So did the kids, less work for them to make piles for jumping in! However, I got the strong feeling that he was annoyed that there was this pile just sitting there, waiting to be picked up, and all the kids seemed interested in doing was playing in it! Kids these days! There were a few words of "discipline", but I didn't get what he was talking about, so I ignored it! But I thought that I had better pick some of them up to add to our compost bin.
Eden insisted on helping too! When she wasn't crying and getting angry because she wanted to use my shovel, that is. (And, yes, I used a big snow shovel to pick up the leaves. It's just easier. I'm not too sure where we got the shovel from though. We have so little snow here, so I doubt that we bought it, so it must be from our MIL! She'd get us one.) She found a little blue dust pan to use instead. We're clever like that, using different utensils for other uses!
She just needs to stretch just a bit higher....
It made me giggle. I thought it was cute that she was trying to dump the leaves into the bin, but couldn't reach, so most of them would fall into her face in the end. She still kept trying though, and that was sweet.
I love toddlers. They always want to help you out because they don't think of it as "chores" yet! That will change soon, I'm sure.
Wednesday, October 16, 2013
Today is National Baby Loss Awareness Day. October fifteenth.
With a day that is so important, so deep, I find the name lacking. But how do you put into words the emotions involved in the loss of a baby? There just aren't any.
I remember when I lost my first baby. It was 2000 and I was just about to celebrate my first wedding anniversary with the discovery of my first pregnancy. It was perfect! I was over the moon! I had everything I had ever wanted: a wonderful, loving husband and a baby soon following. I bought the baby books, I obsessed over magazines, I started to collect ideas for a scrapbook. We told our family right away, that's how excited I was! I even started to write out cards to announce it to family members living across the country. This baby was everything to me.
I remember reading every pregnancy info I could find. What to expect, what to look out for, what to ask your doctor about, what to decide on. I knew it all. I remember reading over the the warning signs as well; the things that could be bad, but I was able to wave it off with a relieved sigh as I had nothing to worry about. I had some spotting, but that's normal. It didn't last anyways. And even at about 6 weeks, when I had such severe stomach cramps at work, where I couldn't even work for a half hour as I sat in the back room in pain and worry, I shrugged off as it never happened again. The days and weeks went by easily.
I remember walking into the hospital for my routine 12 week ultrasound in confidence. I brought my mom and my sister along so that they could enjoy this moment too. Aside from having a full bladder and a non-speaking technician, I had no reason to think anything was amiss. But then it started to take a long time. She moved that wand around my belly in every possible direction, had me move to my sides, trying to get better pictures. Things started to feel concerning when she said that she needed to talk to a supervisor. It got scary when she returned to say that she was going to do a trans-vaginal ultrasound on me. I had never heard of those before! (Coming from a woman who was not sexually active prior to marriage and has lived a pretty tame and pure life --some might say 'prudish'-- the idea of one made me ill. You want to do put what where? It was a horrifying experience. Not that she wasn't gentle or caring or anything, but it was invasive and made me very uncomfortable. If they were to find a way to do these sorts of scans in a less intimate way, I would be very grateful. Many women would be.) When she left to consult her supervisor again, I knew something wasn't right, and I kept singing a song in my head to keep me from losing stability.
She returned, told me to take a piece of paper to the emergency ward, and that there was nothing in my uterous.
I had no idea what she was talking about. What do you mean there is nothing there? I'm pregnant. I have the tests to prove it. The morning sickness, the sore breasts, the frequent urination that tells me so. I am almost out of my first trimester. Something isn't right.
I remember walking to the emergency ward, and going up to the front desk, totally confused. I didn't know what was going on. I didn't know why I was there. I didn't know what I was supposed to do. All I knew is that my Mom was crying and I was lost. And then a cruel triage nurse tells me, rather coldly, that I am having an Ectopic Pregnancy and there is no baby. Her exact words aren't in my memory anymore, but I remember her harshness and I remember how uncaring she was.
So suddenly, my joy of seeing my 12 week baby on screen was traded with the fear and confusion of a pregnancy that would not result in a baby, but also needed to be stopped. I remember feeling numb as I got into a gown and had an IV inserted. I remember using my sister's cellphone to call my Hunny with the news, but I don't remember what was said, or how long my mom and sister stayed or what we did to pass the time in the emergency ward. It's all a blur.
I remember trying to be strong, but really I was devastated and I didn't know what to do or say. I wanted to cry and I wanted someone to hold me and tell me that things would be okay, but my husband was just as lost. I remember wanting to throw up when they gave me a shot of Methotrexate in my backside. Not only did it hurt like hell, but my heart crushed then and my life changed after that one moment. That injection left scars that still hurt. I know now that I wasn't killing my baby, but that's how it felt. That I had just given a toxic medication that would save my life (so my tube wouldn't burst), but it was aborting my own child, something that I could not, would not, ever choose to do. And that weighed heavy on me for so long; this guilt that I felt. (Thankfully, later I came to realize that this baby hadn't survived and that the Methotrexate moved the cells out of my tube so that my body could heal. Likely, when I felt the massive cramp at 6 weeks, my baby was already dying and outgrowing the tiny space it wasn't supposed to be in. We just didn't realize that's what happened until 12 weeks.)
It took my body and my heart a year to heal. They say that you can start trying for another baby after 3 months, as it takes that long for you to heal physically, but my periods were so crazy and my cycles kept getting longer and longer and I was a wreck. I fell into a depression where every month was another waiting game to see if we were pregnant again, and every month another let down when we weren't. Suddenly, everything good and perfect in my life had fallen apart and was stolen. (sad way of viewing it, eh? Considering I still had my wonderful loving husband, and I had my supportive family, and I had a great job and caring friends. But when you're grieving and depressed, it's easy to see what you're lacking than what you have, even if you know you have been blessed.)
I still think of her on New Year's Eve. Her due date was 01-01-01. And I was convinced she was a she, and so I named her Lily because it sounded delicate and beautiful.
My story still brings me to tears, even though it has been thirteen years. Wow. She would be a teenager this year! But, thanks be to God, He has blessed me still and my life is full! A year after we conceived Lily, and at our second anniversary, we found out we were pregnant with Abi! And after the first fears were put aside, and we were given an early ultrasound to determine baby was perfectly nestled in my womb and I had gotten past my first trimester, things went by well. What a beautiful gift He gave me when He answered my prayers for a child!
Then along came Kai, and how wonderful is that? A toddler and a baby boy. Life was great!
But then I had my second ectopic. I knew that after having one, your chances of another was a lot higher, but after two healthy pregnancies I thought maybe I'd pass that. Yeah, not so much. The thing is that I didn't even know that I was pregnant!
It was 2005. That was a terribly rough year medically. I was diagnosed with depression, and an underactive thyroid. Gah!
We had just said good night to friends who came over for dinner and Bible study. I had put Abi to bed and was holding Kai and trying to keep him asleep while I played on the computer when I had such incredible cramps. They took my breath away! I managed to stumble out to the living room and told Hunny that the pain was like being in labour with the other two except that it wasn't letting up like a contraction and I wasn't pregnant! He asked if I needed to go to the hospital, but I so valiantly said that it may pass over and I'd be okay. *rolleyes* He called his sister to watch our kids (she conveniently lived below in our basement suite) while he drove me.
I remember thinking it was an ectopic, and telling the hospital staff. I remember thinking that if it was that it could be dangerous. I'd heard of stories of women who had their tubes burst and they bled internally and almost died (and some have) because they weren't cared for properly. I was so scared of that happening! I was in so much pain that I couldn't even sit properly in my chair in the triage, and I felt so ill, and I had purple-ish brown blood (yeah, not my period after all.)
When I was finally brought in to a bed, I did my customary pee in a cup for them, and we waited for a doctor. When he arrived, Doctor Brilliant says with slight optimism, "well, you're pregnant!" followed by a pause and a "is this good news?" I looked at him blankly and responded, "not if that's why I'm in pain!" Sheesh. Some people. Since it was around midnight by then, they couldn't do an ultrasound on me since it was closed, so I'd have to spend the night and wait til morning. But since I was in so much pain, they at least gave me morphine. I've said this before, but let me say it again: this is such a strange drug!!! It feels so incredibly out-of-body-like when it takes affect; I have a really hard time thinking that people like this feeling and get addicted to it!!! But it did take away my pain, and I did get to sleep.
The next day, an ultrasound confirmed that I was having an ectopic pregnancy again, so a laproscopy was scheduled for me. We decided that since this was my second, that the Olders were likely conceived and traveled the healthy right tube, and that my left fallopian tube was scarred and damaged; it was in our best interest to remove it. I was all for that, even though I was a bit unsure of my fertility. I was down to one tube. Would that cut my chances in half? Would that mean my dreams of a large family were gone? I was pleasantly surprised when the obstetrician I met after surgery for my follow up appointment told me that since I had both ovaries, they would both still continue to release eggs, and in the wonder that is our body, the eggs dropped on the left would still manage to make their way to the right tube. How awesome is that???
Turns out it's true! A year later, we welcomed Bryn, and then two years after, Rhys. With one tube too!
Sadly, I did have a miscarriage in 2010 though. That was a tough one. Not nearly as hard as my first ectopic but harder than my second EP. (with that EP, I felt no connection to the baby. No naming, no feelings of gender, and no due date to obsess over. The day I found out I was pregnant was the day I knew it wasn't going to last. I was "pregnant", but not with a baby like the ones I had at home. So this one wasn't as emotional for me as much as it is a part of my story still.) This pregnancy came at a horrible time, when things were so stressful, when a baby was not a part of our plan, when I did not wish for this baby or long for it. It was so incredibly hard and I spent many tears over it, praying, begging, asking God for guidance. It took a few weeks to finally accept the pregnancy as a part of God's plan for our life, good or bad, when I started to bleed. And that sinking feeling again. The one that tells you that things may not end well. I bled for three or four days, red thick blood that ripped at my soul. It taunted me and threw back all my fears in my face; like a cruel joke. An undesired pregnancy that I came to accept and maybe start to plan for just to have to accept that it wasn't meant to be. What was the use of that? It took me several weeks to get over that. I feel shame over the whole thing still, and have many questions that will only be answered when I see Him face to face.
Three babies in heaven wait for me. I have been pregnant eight times.
Despite the pain, the tears, the depression, the anxiety over my losses, I am more reminded of my blessings. I have five wonderful babies. I am so richly blessed. I know many women who don't get to hold that many in their arms. That the ones they have in heaven out number the ones in life. I don't understand the Whys, but I do know that God is watching out for us, and He has a plan for each and every one of us and that He wants to bless us and draw us to Him.
I knew that life had moved on in a good direction when I was finally able to get through New Year's Eve without remembering my loss. And that's a good thing. I will always hold my babies in my heart, and they will always be a part of my story, and I hope that I can be used as an encouragement to others, but I can look forward with joy. One day I will meet those babies and I will know their names and it will be wonderful.
Today, as we Remember Infant and Baby Loss, I remember my babies, and I remember Quinn, my cousin's boy who was born still last year, and I remember the babies my friends have lost through Ectopics and their loss of fertility as well, I remember Calypso, my friend's little girl who lived and fought a tough battle for a few weeks after being born prematurely and very ill, and I remember how Baby Loss is still such a quiet subject. It's so personal and so emotional that you can't just bring it up out of the blue. How do you tell someone that you have lost babies? How does it possibly come up in a conversation? It's not something we tend to talk about. So I remember the hearts that have been broken, wounded, scarred and are healing slowly with pain that can not be put into words.
When I had my first ectopic pregnancy 13 years ago, there wasn't a lot of information out there. I remember a tiny little blurb in a pregnancy book, that was it. Everything I read said that it was "rare", as if that were to alleviate fears that it wasn't likely to happen. (I have begun to recognize that if things are rare that they have a higher chance of happening to us. We have had many rare things happen. Ectopics. Cardiomyopathy. Subcutaneous Emphesyma. to name a few) I remember being so upset at that word. RARE. And I wanted to write to every book author and every magazine and tell them it's not that rare after all! It can and does happen. And sometimes you don't know why!
I wandered around in my loss and depression for years, and it wasn't until after I had my second EP that I found a group that supported me. I could not find any group whatsoever in Canada or in the States. The hospitals didn't know what to say, the doctors just told you that your fertility would likely be okay, but no one was able to support and grieve with you. What a blessing it was for me to find Ectopic Pregnancy Trust, a group dedicated to early pregnancy complications in the UK! I joined their message boards and met so many wonderful and dear friends. And my heart healed.
Please, please, if your heart is hurting and you have suffered a baby loss, do not grieve alone! Find someone. Even if that someone is a stranger online! You may find many a kindred friend there. I know I have! Please, talk to someone about your pain and your fears; these are normal things and it is ok to talk them through. Cry. Laugh. Remember. You don't have to go through this alone, and you shouldn't.
If you have friends who have suffered a baby loss, please support them. You will not know what to say, and that is okay. You don't always need the "right words", sometimes just knowing that there is a friend to talk to is enough. Listen to your friend, let her tell you her story (many times if she needs), let her cry. Hold her. Tell her that you don't know what to say, but your heart aches with them.
May today be a peaceful one for you.
With a day that is so important, so deep, I find the name lacking. But how do you put into words the emotions involved in the loss of a baby? There just aren't any.
I remember when I lost my first baby. It was 2000 and I was just about to celebrate my first wedding anniversary with the discovery of my first pregnancy. It was perfect! I was over the moon! I had everything I had ever wanted: a wonderful, loving husband and a baby soon following. I bought the baby books, I obsessed over magazines, I started to collect ideas for a scrapbook. We told our family right away, that's how excited I was! I even started to write out cards to announce it to family members living across the country. This baby was everything to me.
I remember reading every pregnancy info I could find. What to expect, what to look out for, what to ask your doctor about, what to decide on. I knew it all. I remember reading over the the warning signs as well; the things that could be bad, but I was able to wave it off with a relieved sigh as I had nothing to worry about. I had some spotting, but that's normal. It didn't last anyways. And even at about 6 weeks, when I had such severe stomach cramps at work, where I couldn't even work for a half hour as I sat in the back room in pain and worry, I shrugged off as it never happened again. The days and weeks went by easily.
I remember walking into the hospital for my routine 12 week ultrasound in confidence. I brought my mom and my sister along so that they could enjoy this moment too. Aside from having a full bladder and a non-speaking technician, I had no reason to think anything was amiss. But then it started to take a long time. She moved that wand around my belly in every possible direction, had me move to my sides, trying to get better pictures. Things started to feel concerning when she said that she needed to talk to a supervisor. It got scary when she returned to say that she was going to do a trans-vaginal ultrasound on me. I had never heard of those before! (Coming from a woman who was not sexually active prior to marriage and has lived a pretty tame and pure life --some might say 'prudish'-- the idea of one made me ill. You want to do put what where? It was a horrifying experience. Not that she wasn't gentle or caring or anything, but it was invasive and made me very uncomfortable. If they were to find a way to do these sorts of scans in a less intimate way, I would be very grateful. Many women would be.) When she left to consult her supervisor again, I knew something wasn't right, and I kept singing a song in my head to keep me from losing stability.
She returned, told me to take a piece of paper to the emergency ward, and that there was nothing in my uterous.
I had no idea what she was talking about. What do you mean there is nothing there? I'm pregnant. I have the tests to prove it. The morning sickness, the sore breasts, the frequent urination that tells me so. I am almost out of my first trimester. Something isn't right.
I remember walking to the emergency ward, and going up to the front desk, totally confused. I didn't know what was going on. I didn't know why I was there. I didn't know what I was supposed to do. All I knew is that my Mom was crying and I was lost. And then a cruel triage nurse tells me, rather coldly, that I am having an Ectopic Pregnancy and there is no baby. Her exact words aren't in my memory anymore, but I remember her harshness and I remember how uncaring she was.
So suddenly, my joy of seeing my 12 week baby on screen was traded with the fear and confusion of a pregnancy that would not result in a baby, but also needed to be stopped. I remember feeling numb as I got into a gown and had an IV inserted. I remember using my sister's cellphone to call my Hunny with the news, but I don't remember what was said, or how long my mom and sister stayed or what we did to pass the time in the emergency ward. It's all a blur.
I remember trying to be strong, but really I was devastated and I didn't know what to do or say. I wanted to cry and I wanted someone to hold me and tell me that things would be okay, but my husband was just as lost. I remember wanting to throw up when they gave me a shot of Methotrexate in my backside. Not only did it hurt like hell, but my heart crushed then and my life changed after that one moment. That injection left scars that still hurt. I know now that I wasn't killing my baby, but that's how it felt. That I had just given a toxic medication that would save my life (so my tube wouldn't burst), but it was aborting my own child, something that I could not, would not, ever choose to do. And that weighed heavy on me for so long; this guilt that I felt. (Thankfully, later I came to realize that this baby hadn't survived and that the Methotrexate moved the cells out of my tube so that my body could heal. Likely, when I felt the massive cramp at 6 weeks, my baby was already dying and outgrowing the tiny space it wasn't supposed to be in. We just didn't realize that's what happened until 12 weeks.)
It took my body and my heart a year to heal. They say that you can start trying for another baby after 3 months, as it takes that long for you to heal physically, but my periods were so crazy and my cycles kept getting longer and longer and I was a wreck. I fell into a depression where every month was another waiting game to see if we were pregnant again, and every month another let down when we weren't. Suddenly, everything good and perfect in my life had fallen apart and was stolen. (sad way of viewing it, eh? Considering I still had my wonderful loving husband, and I had my supportive family, and I had a great job and caring friends. But when you're grieving and depressed, it's easy to see what you're lacking than what you have, even if you know you have been blessed.)
I still think of her on New Year's Eve. Her due date was 01-01-01. And I was convinced she was a she, and so I named her Lily because it sounded delicate and beautiful.
My story still brings me to tears, even though it has been thirteen years. Wow. She would be a teenager this year! But, thanks be to God, He has blessed me still and my life is full! A year after we conceived Lily, and at our second anniversary, we found out we were pregnant with Abi! And after the first fears were put aside, and we were given an early ultrasound to determine baby was perfectly nestled in my womb and I had gotten past my first trimester, things went by well. What a beautiful gift He gave me when He answered my prayers for a child!
Then along came Kai, and how wonderful is that? A toddler and a baby boy. Life was great!
But then I had my second ectopic. I knew that after having one, your chances of another was a lot higher, but after two healthy pregnancies I thought maybe I'd pass that. Yeah, not so much. The thing is that I didn't even know that I was pregnant!
It was 2005. That was a terribly rough year medically. I was diagnosed with depression, and an underactive thyroid. Gah!
We had just said good night to friends who came over for dinner and Bible study. I had put Abi to bed and was holding Kai and trying to keep him asleep while I played on the computer when I had such incredible cramps. They took my breath away! I managed to stumble out to the living room and told Hunny that the pain was like being in labour with the other two except that it wasn't letting up like a contraction and I wasn't pregnant! He asked if I needed to go to the hospital, but I so valiantly said that it may pass over and I'd be okay. *rolleyes* He called his sister to watch our kids (she conveniently lived below in our basement suite) while he drove me.
I remember thinking it was an ectopic, and telling the hospital staff. I remember thinking that if it was that it could be dangerous. I'd heard of stories of women who had their tubes burst and they bled internally and almost died (and some have) because they weren't cared for properly. I was so scared of that happening! I was in so much pain that I couldn't even sit properly in my chair in the triage, and I felt so ill, and I had purple-ish brown blood (yeah, not my period after all.)
When I was finally brought in to a bed, I did my customary pee in a cup for them, and we waited for a doctor. When he arrived, Doctor Brilliant says with slight optimism, "well, you're pregnant!" followed by a pause and a "is this good news?" I looked at him blankly and responded, "not if that's why I'm in pain!" Sheesh. Some people. Since it was around midnight by then, they couldn't do an ultrasound on me since it was closed, so I'd have to spend the night and wait til morning. But since I was in so much pain, they at least gave me morphine. I've said this before, but let me say it again: this is such a strange drug!!! It feels so incredibly out-of-body-like when it takes affect; I have a really hard time thinking that people like this feeling and get addicted to it!!! But it did take away my pain, and I did get to sleep.
The next day, an ultrasound confirmed that I was having an ectopic pregnancy again, so a laproscopy was scheduled for me. We decided that since this was my second, that the Olders were likely conceived and traveled the healthy right tube, and that my left fallopian tube was scarred and damaged; it was in our best interest to remove it. I was all for that, even though I was a bit unsure of my fertility. I was down to one tube. Would that cut my chances in half? Would that mean my dreams of a large family were gone? I was pleasantly surprised when the obstetrician I met after surgery for my follow up appointment told me that since I had both ovaries, they would both still continue to release eggs, and in the wonder that is our body, the eggs dropped on the left would still manage to make their way to the right tube. How awesome is that???
Turns out it's true! A year later, we welcomed Bryn, and then two years after, Rhys. With one tube too!
Sadly, I did have a miscarriage in 2010 though. That was a tough one. Not nearly as hard as my first ectopic but harder than my second EP. (with that EP, I felt no connection to the baby. No naming, no feelings of gender, and no due date to obsess over. The day I found out I was pregnant was the day I knew it wasn't going to last. I was "pregnant", but not with a baby like the ones I had at home. So this one wasn't as emotional for me as much as it is a part of my story still.) This pregnancy came at a horrible time, when things were so stressful, when a baby was not a part of our plan, when I did not wish for this baby or long for it. It was so incredibly hard and I spent many tears over it, praying, begging, asking God for guidance. It took a few weeks to finally accept the pregnancy as a part of God's plan for our life, good or bad, when I started to bleed. And that sinking feeling again. The one that tells you that things may not end well. I bled for three or four days, red thick blood that ripped at my soul. It taunted me and threw back all my fears in my face; like a cruel joke. An undesired pregnancy that I came to accept and maybe start to plan for just to have to accept that it wasn't meant to be. What was the use of that? It took me several weeks to get over that. I feel shame over the whole thing still, and have many questions that will only be answered when I see Him face to face.
Three babies in heaven wait for me. I have been pregnant eight times.
Despite the pain, the tears, the depression, the anxiety over my losses, I am more reminded of my blessings. I have five wonderful babies. I am so richly blessed. I know many women who don't get to hold that many in their arms. That the ones they have in heaven out number the ones in life. I don't understand the Whys, but I do know that God is watching out for us, and He has a plan for each and every one of us and that He wants to bless us and draw us to Him.
I knew that life had moved on in a good direction when I was finally able to get through New Year's Eve without remembering my loss. And that's a good thing. I will always hold my babies in my heart, and they will always be a part of my story, and I hope that I can be used as an encouragement to others, but I can look forward with joy. One day I will meet those babies and I will know their names and it will be wonderful.
Today, as we Remember Infant and Baby Loss, I remember my babies, and I remember Quinn, my cousin's boy who was born still last year, and I remember the babies my friends have lost through Ectopics and their loss of fertility as well, I remember Calypso, my friend's little girl who lived and fought a tough battle for a few weeks after being born prematurely and very ill, and I remember how Baby Loss is still such a quiet subject. It's so personal and so emotional that you can't just bring it up out of the blue. How do you tell someone that you have lost babies? How does it possibly come up in a conversation? It's not something we tend to talk about. So I remember the hearts that have been broken, wounded, scarred and are healing slowly with pain that can not be put into words.
When I had my first ectopic pregnancy 13 years ago, there wasn't a lot of information out there. I remember a tiny little blurb in a pregnancy book, that was it. Everything I read said that it was "rare", as if that were to alleviate fears that it wasn't likely to happen. (I have begun to recognize that if things are rare that they have a higher chance of happening to us. We have had many rare things happen. Ectopics. Cardiomyopathy. Subcutaneous Emphesyma. to name a few) I remember being so upset at that word. RARE. And I wanted to write to every book author and every magazine and tell them it's not that rare after all! It can and does happen. And sometimes you don't know why!
I wandered around in my loss and depression for years, and it wasn't until after I had my second EP that I found a group that supported me. I could not find any group whatsoever in Canada or in the States. The hospitals didn't know what to say, the doctors just told you that your fertility would likely be okay, but no one was able to support and grieve with you. What a blessing it was for me to find Ectopic Pregnancy Trust, a group dedicated to early pregnancy complications in the UK! I joined their message boards and met so many wonderful and dear friends. And my heart healed.
Please, please, if your heart is hurting and you have suffered a baby loss, do not grieve alone! Find someone. Even if that someone is a stranger online! You may find many a kindred friend there. I know I have! Please, talk to someone about your pain and your fears; these are normal things and it is ok to talk them through. Cry. Laugh. Remember. You don't have to go through this alone, and you shouldn't.
If you have friends who have suffered a baby loss, please support them. You will not know what to say, and that is okay. You don't always need the "right words", sometimes just knowing that there is a friend to talk to is enough. Listen to your friend, let her tell you her story (many times if she needs), let her cry. Hold her. Tell her that you don't know what to say, but your heart aches with them.
May today be a peaceful one for you.
Monday, October 14, 2013
Guess what??? I am so excited!!!
Rhys finally got it!!!
I have been working on him to write something anything other than just lines and circles for a good two years. Squares! Smiley faces! Letters! But he's never wanted to. Instead he'd say, "I can't!" and that would be it. He wouldn't even try because he was convinced that he couldn't. (I don't think it was a self-esteem issue as much as it was that he lacked the ability to figure out how to do it.)
Well, he finally tried!
((This actually happened a few days before school began, but I didn't get my pictures off of my cell phone until now.))
I asked him if he wanted me to write his name for him and if he wanted to write it also, and this was the first time he actually has ever agreed! It surprised me! We sat at the table and pulled out the markers and I tried to tell him verbally how to do it. Do you understand how hard that is? "Ok, draw your R. It's a line down. Good. Now do a bubble at top. Yep, almost. Ok, good. Now do a line sticking out of it! ...And now do an H. It's a line down with a little hat...." LOL Yeah. I'm not a teacher. Surely there are better ways to explain it. Maybe even proper terms! But he did it!
My little boy wrote his name!!!!!
I was so excited for him, that my heart swelled and my eyes leaked!
Rhys was so proud of myself as well. (It helped that I made a huge deal out of it)
His picture remained on our fridge for several weeks. (The fridge is reserved for the BEST work!!! Rhys loves putting anything he's done on it!) I've recently taken it down to add to his own "growth collection." (It's where all the art and work the kids have done since they were toddlers go. Their first picture of scribbles, their first 100% on a test, their first painting, etc. And then I add their school portfolios/scrapbooks at the end of the year along with class pictures. ...Which reminds me; I need to go through those bins again, make sure they are sorted out and organized. Maybe even consider getting larger bins.)
He has accomplished so much in the past few months, it's been crazy! I shake my head at all he can do now. And just his infectious enthusiasm over everything. This kid gets excited! What a blessing he is to us!
YAY!!! I didn't know when he'd ever learn to do this. His preschool teacher says this is normal for his age, but then I reminded her that he's actually already 5. It's easy to forget that. He does seem to fit in well with the 4 year olds. I kept him back with the age 4 class at church too, and that is going well. This year is turning out really good for my boy, and my heart is happy.
Sunday, October 13, 2013
I found this on FB one day and it really struck me. It's from Live Laugh Love.
The good times and the bad times both will pass. It will pass. It will get easier. But the fact that it will get easier does not mean that it doesn’t hurt now. And when people try to minimize your pain they are doing you a disservice. And when you try to minimize your own pain you’re doing yourself a disservice.
The truth is that it hurts because it’s real. It hurts because it mattered. And that’s an important thing to acknowledge to yourself. But that doesn’t mean that it won’t end, that it won’t get better. Because it will....
So true.
The good times and the bad times both will pass. It will pass. It will get easier. But the fact that it will get easier does not mean that it doesn’t hurt now. And when people try to minimize your pain they are doing you a disservice. And when you try to minimize your own pain you’re doing yourself a disservice.
The truth is that it hurts because it’s real. It hurts because it mattered. And that’s an important thing to acknowledge to yourself. But that doesn’t mean that it won’t end, that it won’t get better. Because it will....
So true.
Saturday, October 12, 2013
What is Mitochondrial Disease?
Mitochondria exist in nearly every cell of the human body, producing
90 percent of the energy the body needs to function. In a person with
mitochondrial disease, the mitochondria are failing and cannot convert
food and oxygen into life-sustaining energy. For many, mitochondrial
disease is an inherited genetic condition, while for others the body's
mitochondria can be affected by other environmental factors.
About 1 in 4,000 children in the United States will develop mitochondrial disease by the age of 10.
1,000 to 4, 000 children, per year in the United States,are born with a type of mitochondrial disease.
According to Mitoaction.org, the Challenges of living with mitochondrial diseases are:
- Affects multiple organs, affects multiple family members, affects multiple generations.
- Lack of awareness and understanding of the disease
- Families are continuously forces to expend their very limited energy to explain their disease, advocate for themselves and fight for services.
- Mitochondrial disease is often an " invisible disease."
- Good day - patients look fine and healthy. They have more energy and appear rested.
- Bad day - - patients appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Repeated "bad days"often lead to decompensation and patients have difficulty returning to baseline.
- Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened.
- Difficulties establishing a diagnosis interfere with a patient's ability to obtain adequate recognition, medical care, adequate insurance coverage, healthcare supports and disability services.
- Lack of understanding of the disease and misinterpretation of symptoms can lead to misdiagnosis. Further progression of symptoms can occur if the symptoms are missed and opportunities for treatment and support are not recognized.
- An individual can become symptomatic at any time in life despite the fact that it is inherited.
- It is difficult to diagnose.
Jack Black has been raising awareness of this disease (I found out that he has a family friend with this) and he's been working with UMDF for several years. You can see his fun mito kid-friendly page here>>>"Jacks" Power Squad. Fun and quirky.
He has some great PSAs out too. Check them out on Vimeo. <<I hope the link works, since I can't post videos that aren't from YouTube directly onto my page. (or at least, I don't know how to yet) If you don't find them, just do a search for "Jack Black UMDF".
Please keep my friend in your prayers, and consider learning more about this devastating disease. Maybe even donate to UMDF, or to Brayden's Memorial Fund (which another friend has started up).
Thank-you.
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