Our Journey

Life has been a bit of a whirlwind lately. The flu hit our house and it hit us hard!!! Thankfully, Anna hasn't gotten it yet.....hopefully it will skip her because it is a nasty bug!!
Just writing to give a bit of an update. Anna, as always, has had her good days and bad days. Last week, many kids from her school went on a trip to Victoria for the day. Anna really wanted to go but I was super worried that she wouldn't be able to do it as they were going to be doing a march for life. Anna has difficulties walking for any extended periods of time and I had no idea how to jump through this hurdle! I want her to be involved, and want her to do as much as any other teenager, but I always want to make sure that things are safe for her to do. Luckily, we know someone who has a wheelchair and she was kind enough to lend it to Anna for the day!! YAY!!! At first, Anna was a bit hesitant about using it but soon recognized that it was necessary in order to go on the trip. The day came to go to Victoria, and Anna was so scared that people would tease her or make fun of her for being in the chair. I told her to hold her head up and sit in that chair proudly! Many people in her school know that she is sick, so of course everyone was kind, which was such a relief for her! It's bizarre that we are now at a point that she requires a wheelchair to do certain activities but we are so grateful that she still has the desire and determination to keep going. She has chosen to make alterations to her life to make sure she doesn't miss out...she is a champ!
This past weekend was awesome! Anna felt pretty good, so, in typical Anna fashion, she seized the opportunity and took full advantage of feeling half decent! Friday night she had a friend over for a visit. Saturday she went to a bbq, then we had a bbq at our house the same night, she had a friend sleep over Saturday night and then had kind of a lazy day on Sunday. I love when life feels normal; when we're just doing regular activities like any other family. These are the moments that I savour and really look forward to when days are hard.
Sunday night, things kind of went downhill. Anna went to bed fairly early. Matt and I were asleep and were woken up at 3:30 am by Anna. She was sick. Terribly sick. She crawled into our bed shaking, trembling, freezing and barely able to speak. She laid next to me while Matt went to get her gatorade. Matt went to the spare room and I just rubbed Anna's body as she tried to recover. I rubbed her legs as she held her head and moaned. This is the time that I hate; the time where I feel helpless and the time that I wish so badly that she didn't have to suffer.
Anna didn't make it to school Monday and was too sick to go today as well. I really struggle sometimes going to work knowing that I am leaving behind a very sick girl who would love to have me home. Unfortunately, we are not rich ;)  so I need to go to work and Anna completely understands that but it doesn't always make it any easier. I had a moment at work today where I shed a few tears. I'm sure exhaustion played a role in having my emotions spill over, and maybe the fact that I try and keep it together all the time, and maybe that I had a beautiful person take the time to chat with me and talk about Anna....all of those things can definitely bring a few tears to my eyes!
You know, as we walk this journey, we are learning so much and truly discovering what is important and haw valuable certain things are. We are learning to rely on each other for support and learning that, as a family, we are strong. Our two boys have been forced on this journey too, and they have done it without one complaint. As much as I wish this was not a part of our lives, it is, and we are trying to make the best of it. There may be days full of tears, pain, suffering and complete anger, but there are also plenty of days filled with spunk, spirit and life...these are what we focus on. Thank you to all of you who are on this journey with us.

Hey! It's been a couple of weeks since my last post. Sometimes I feel like a need not to write; I can almost pretend that life is normal, pretend that all is good and pretend that what Anna is going through is a distant memory. Of course, that's not true, but sometimes living in a world of denial, even though short lived, can be refreshing!
I think one of the weirdest things about having a child with a chronic illness is that life goes on. It has to go on, but sometimes it just kind of jumps out at me like flashing neon lights. When I see other kids playing sports, or making teams, or just living and I think wow!! I took that for granted not too long ago. I used to complain about how busy we were driving here and there for different games and now I would do anything to be doing that. At the beginning of her illness, so many people asked about her and asked about us, but now it is just a part of our lives and that doesn't happen as much anymore. I sometimes wonder if people just think she's doing ok or if life goes on and we re just expected to move along with things too? I don't know? Maybe it's because when people do see her, Anna is having a really good day. If she wasn't, she would be at home in bed! I guess people don't see the down and dirty, ugly side of dysautonomia that plays such a huge part of our lives. I sometimes wonder if people think we're crazy!!! If you see Anna on her good days, she looks like a million bucks!! I know that people care...I know that they care a lot....like I said, it's just one of those weird things!
Since my last post, Anna had a drs appointment with our family physician. He suggested that we may want to consider switching the beta blocker that she is on. At the appointment, we decided to keep things as they are, but since discussing it further with Anna, I think we might go for the switch! With her current beta blocker, it will be really hard for Anna to increase her exercise...we are hoping with a new medication, maybe she will be able to be more active! In some ways, I am terrified to try something new. On the other hand though, I always have this faint hope that maybe, just maybe, something that we will try will miraculously cure her!!!
We have also decided to stop the acupuncture treatment. It was making her feel so sick and we weren't seeing enough improvement for me to keep putting her through it. It kind of felt like another roadblock; another attempt at something to try to help Anna, and another failure. I know that we can't give up though, and we will continue looking for alternate treatments!
We also discovered that Calgary has opened up a clinic for dysautonomia/POTS patients! I am super excited about this! I told our family dr about it and hopefully we will get a referral to go there!!! It would be amazing to go to a clinic where drs specialize in this and are actively researching!!!

Keep fighting!

First off, happy, happy birthday to Matt!!! This year has been tough and you have been an amazing support through it all!!

 

I actually have some pretty exciting news! I was able to speak with a lady yesterday whose daughter has the same diagnosis as Anna!!! It may not seem very exciting to others, but to have a conversation with someone who truly understands what we are going through, was amazing. It was so nice to speak with someone who could pronounce dysautonomia.  We talked about all of the struggles and how hard it is to watch our daughters go through this. We talked about how little the medical community knows and how many incorrect diagnosis' they give. How doctors just assume there is nothing wrong with them because by the time they get to the hospital, nothing shows up. We talked about all of the hospital visits and medical appointments. It was like a breath of fresh air. I didn't have to try and convince her that Anna is sick, She knows how sick she is because  her daughter is the same. Her daughter has missed tons of school and is unable to do the activities that she used to. As sad as this is, it was nice to know that someone is facing the same battle. It was nice to reach out and connect with another person who understands the severity of it, the sadness of it, and the heartbreak. It was also nice to talk to each other about how strong our daughters are. They are fighters and determined to get well. Even though the journey seems endless, and so, so hard, they keep putting one foot in front of another. Keep fighting!
If you click the link below, there is a little video of Anna's journey so far!

https://youtu.be/Nv8qwpeaBbQ

Sucker punched

I kind of feel like I've been sucker punched and the wind has been knocked out of me. I thought I would take a look at the roster for the upcoming Rep Soccer season. I knew Anna's name wouldn't be on it, and I know if she gets well, she'll be placed on a team, so I thought I would be fine looking at the list. Boy, was I wrong! Looking at the roster, and not seeing her name on it, truly took my breath away. Seeing all of the names of her friends, and people she has played with for years on the list, and Anna's name missing, feels wrong. I know it can't be helped, and we can't do anything to change it, but it is a sickening feeling. I honestly don't even have words to describe it. Her name should be on that list. She should be jumping up and down excited for another season. She should be celebrating with her teammates. Instead, she is downstairs sleeping, too sick to get out of bed and I am here trying to keep my tears in thinking of what has been lost. Wow. How did we get to this point? To be honest, I am a bit of a mess right now. I keep thinking why? Why did this have to happen? Why did a beautiful girl like Anna have to have such a debilitating illness? Why? I know there are no answers but I have so many questions and today is a day where I am just mad. Mad at the whole situation and mad that this happened to her. Mad that she is not on the team. Mad that she can't run and skip and play like most people her age. Mad that all of this is out of our control and there is absolutely nothing we can do to fix it.

On top of the world!

Anna had a great week last week! She actually had 8 days where she felt pretty good. Saturday night she started to turn again and not feel the best. She was at a friends house for a sleepover. I was going to pick her up but she decided she would stay and just go to sleep. In times like this, I just want to go get her and bring her home, but I am really trying to give Anna some control. If she thinks she can make it through something, I want her to try. We were planning on picking her up around 1 Sunday. She texted around 12:15 asking if we were on our way. I figured she can't be doing that well if she wants to go home. Matt left to grab her. When she got home, she looked so sick. She said they had tried to go for a walk and she just couldn't do it. Her legs had gone numb and she had to sit on the side of the road. She said that at one point, she started to walk into the middle of the road without even realizing it. Thankfully her friend grabbed her! I think sometimes that is the hardest part about her illness. The fact that, besides completely ravaging her body, it also causes her to completely lose all focus and she literally cannot concentrate on anything. When she is in the throes of her illness, her brain does not work the way it's supposed to. At times, you can actually see her thinking;trying to string words together and try and remember things. It's insane!
Anna missed school Monday and Tuesday but was able to go today. Hopefully she will make it through the rest of the week. A couple of months ago, we started acupuncture treatment for Anna. I have read that this can be beneficial for some patients. After every session, she has come home, and about an hour or two later, been completely wasted. It knocks her out! It knocks her out to the point that she can not walk and can barely speak. We have thought about stopping the treatment but after her last session, even though she was so sick after it, she felt pretty good for a while so we're going to give it a few more tries and see how she responds to it. We figure if it causes her to be super sick for one night, but gives her a week of feeling decent, it will be worth it! She had acupuncture today after school. She is not feeling well right now :(  I am praying that it doesn't last long and she soon perks up! I struggle sometimes on whether or not I am making the right decisions. I want so badly for her to be better but it kills me when I decide something for her, and it makes her feel so ill. While she was laying on the acupuncture bed we were chatting about life and her illness. She is so tired of feeling sick. She is so tired of not having energy and having horrible headaches. She is tired of feeling out of breath just walking up a flight of stairs. We started talking about her good days. Anna looked at me and said, 'Mom, on my good days I just don't feel as sick as my bad days, but I never feel good'.
I am praying that she will soon have good days that are actually good days. Days where she feels on top of the world!

Do not be afraid

I received a call back from the cardiologist the other day. It was not the news that I was hoping for. He doesn't think that IV therapy for Anna will be beneficial. Although I was kind of expecting this response, it's still hard to hear. For me, this was an avenue that I thought might provide Anna a sense of relief. It feels like we are back at square one. When I was speaking with the Doctor on the phone, he was very nice about it all, and very honest. I was explaining how ill Anna had been and how we are frustrated because we don't know what to do for her. Basically, he told us we have a long journey ahead of us and unfortunately, the medical community does not know enough to provide us with any advice. Ahhhh.....so frustrating!!!
On a positive note though, Anna has been feeling pretty good these past few days! She's actually made it to school every day this week!! It's so strange how our outlook on things have changed. Before, we were upset if our child was sick for a few days, now we are celebrating when she's feeling well for a few days.
If you have read some of my previous posts, you may have read that I was hoping for a miracle for April because of soccer tryouts. The miracle hasn't happened yet. Today is the first tryout. So hard. On the way home from school today, Anna mentioned it to me. I didn't bring it up because I know it's a very sensitive subject for her. She wants so badly to be out there with her team. I hate how this illness has taken that away from her. I did talk to the head of the soccer organization and he told me that Anna will have a spot on the rep team but that still doesn't mean she will be able to play. We now have until September for the miracle!
I came across a beautiful passage the other day and I felt like it was meant just for us. It is now something that I look at every day to try and remain clear headed and positive in a situation that can get me down very quickly.
          "Do not be afraid; do not be discouraged, for the Lord your God will be
                                           with you wherever you go"
                       
       

Good Days!

It's Sunday evening and it feels like the weekend should just be starting. Matt and I were saying the other day that the weekends feel like ten working days rolled up in to two days.... so much driving and running around that has to be done! I love doing it though because I know before I know it, these days will be over!
Update on Anna. She has had a really good last few days...yay! I get so excited when she gets to do normal things and feel half decent. It brings a sense of normalcy to our lives even if it is short lived. We spent Saturday at high street mall just walking around and enjoying the sunshine. She spent Saturday night with friends and is now visiting another friend at her house. Anna definitely takes full advantage of feeling well and enjoys her time as much as she can! She's a superstar!
If you read my last post, you know that Anna has not been well at all. It is very hard to watch and we are doing everything that we can to try and help her. One night last week, Anna was so sick. I went downstairs to check on her and she was laying on her bed. I crawled in beside her and asked how she was. She just mumbled an answer and closed her eyes. I asked her if she wanted a drink. She nodded her head so I went and got her her Gatorade. I passed it to her and she could not even lift her arms. She had no strength. I went back upstairs and got a straw. I held it to her mouth, lifted her head, and she took a few sips. She rolled over and her body jerked and trembled. I gave her a kiss on the forehead, hugged her, and left her to rest. I walked upstairs with tears running down my face. I want to take this illness. I want to be the one that has to suffer. I want to be the one that can't move. I just want to take it all away from her. I know I can't though, so I'll just keep researching and fighting for her.
You may know that I had called Children's Hospital and left a message to speak with her cardiologist. I heard back from someone Friday morning. I explained how sick Anna has been and how we really don't know what steps to take. Through my own research, I have heard that many people who suffer from this illness, receive saline IV treatment. Some people receive it weekly, bi-weekly, daily and some people actually have a port where there is a constant flow of saline.I told the person at Children's that this is an option that we want to try for Anna. It may not cure her, but it just might give her a better quality of life. I want to try anything that might help. The lady said that she would send the message to the Dr and get back to me this week. I am so anxious waiting for the call. I am hoping and praying that he is open to trying this treatment plan. I am so scared that he won't let Anna do this. I have read that some doctors are not comfortable trying things that may be outside of the box a bit. If he says no, I will have to keep trying and I will keep fighting until I find a Doctor who is ok with this. The IV treatment may not even work for Anna, but I will not stop until we have tried everything!

To be honest, the last few days have been rough....well actually the last few weeks have been rough! Anna seems to have deteriorated quite a bit and we're not really sure why. She used to have some really good days, but those are becoming fewer and fewer. She only made it to school a couple of days in the past two weeks. This week, she went yesterday and then had to be picked up by 10 am. She stayed home today and most likely will be too sick for school tomorrow. Basically, in three weeks, she's attended school three days....unbelievable! Last night Anna crawled into our bed at 1:30 in the morning. She was dizzy, lightheaded, cold, shaky...you know, all the lovely symptoms that a person with dysautonomia has :(  Before she went to bed last night, she was begging me to help her. It is so difficult not having any answers and no one to turn to. There is absolutely nothing that I can do. We tried calling the drs office this morning to see if we could get her in, but there was no way. I called her cardiologist this evening and left a message. I'm hoping I hear back from him tomorrow. I am desperate for any suggestions to help Anna get through this.

New Normal

It's been a while since I've had time to write. Being back to work leaves so much less time to do the things that I love, but that's ok!
Not many things have changed with Anna. Life is hard for her, but is becoming just a natural part of our routine. Last weekend was Easter. We planned on attending the Easter Vigil Saturday night so that the kids could all sleep in Sunday morning. About an hour before we were to leave for the Vigil, Anna got sick. She was laying on her bedroom floor unable to move. I suggested she get in to her bed so she could rest, but her body wouldn't co-operate. She lay on her floor unable to move. Her eyes were closed, and she was holding her ears. I hugged her and tried to make her as comfortable as possible. We left Anna on the floor of her bedroom and went to Mass. It sometimes seems surreal to me that I would actually leave my daughter on her floor, feeling so sick, but it has become our normal.
It is so difficult to even explain what it's like having a child with a chronic illness. In some ways, it's like having a child who has the flu constantly, with times of severe suffering. She never really feels good. She is always sick. She has moments of feeling ok. She seizes those moments. She goes for walks and hangs out with friends. But those moments are rare, and if she overdoes it, she pays the price for a long time. The strange thing is, is that overdoing it for Anna, could just be walking for half an hour. So mind boggling.
Last week Anna was able to make it to school one day. This week, she went to school on Tuesday, stayed home Wednesday, went to school today but then had to be picked up. She was not well. She is now at home sleeping. It's hard to wrap my head around how sick she is.
We are taking things one day at a time. I have another doctors appointment booked for her in April. I will be begging for some advice. I am not enjoying our new normal even though I know, for now, this is the way it's going to be.

New Day

Spring Break is over...I'm always amazed at how fast holidays go but it's actually kind of nice getting back into the swing of things...except for the dreaded alarm clock in the morning!!!
Anna had a few good days at the end of the break. She spent Friday and Saturday with friends. I was so glad that she felt well enough to get out for a bit! Sunday was a hard day. She slept the entire day. I kept checking in on her, but she was exhausted and did not feel well. I woke her up for dinner, then she went back to sleep. I was worried that she wouldn't be able to sleep Sunday night but she fell asleep right away. She really wasn't doing well though, so she decided that she would stay home from school on Monday. If you know Anna, she loves going to school and seeing her friends so I always know that when she's staying home, she is in bad shape. Before leaving for work Monday morning, I checked on Anna. She said she was feeling awful and had absolutely zero energy. I left for work with strict instructions to call if she got any worse. Matt was fortunate enough to be able to come home around 12. He called and said that Anna was still asleep. He woke her up and she moved to the couch. Matt put a movie on for her, and within 10 minutes, she was fast asleep again. When I got home around 3, she was still sleeping. I finally woke her around 5 to eat some dinner. She stayed up for awhile, then back to bed she went. Her plan was to go to school Tuesday. Matt woke her up Tuesday morning and she got out of bed to get ready. I went down to her room a bit later, and she was curled in a ball on her bed. She said she was just too sick and couldn't go to school :(
Matt, once again, was able to a lot of work from home so he could keep an eye on her. He woke her up around 11 and then decided to take her for a quick bite just to get her out of the house and to try and keep her awake. They came to my work to drop off some lunch for me. Anna was not out of the vehicle for more than five minutes before saying she needed to sit. She draped herself on me and I walked her back to the car. She just wanted to go back to bed. Basically, she has slept right through from Sunday to Tuesday. Although I am somewhat used to dysautonomia, it still shocks me at how much it can take out of a person. How much control it can have over daily living. How much life it can take.
Tomorrow is a new day though. Anna is hoping to be well enough to go to school. We will wait until the morning and see how she is. If she can go, great, if not, she can spend another day at home gaining some strength.  Hoping for a good day tomorrow!

It's a rough one

Well, yesterday was rough. The day started off great and ended in a big pile of tears. Anna started her job yesterday. She did great!!! She worked a full shift and loved everyone. She came home excited to be making money. About an hour after Anna got home, she was laying on the couch completely exhausted. She was pale, sweaty and did not look good. She said something just doesn't feel right. She crawled into the spare room bed and fell fast asleep. I left her for a few hours checking on her occasionally. I eventually woke her up and she was not well at all! I sat on the edge of the bed and just talked with her. She couldn't open her eyes and could barely speak. She was listless and looked so lifeless. I left the room and spoke with Matt. I really think we made a wrong decision in letting Anna work. Her body is not ready. Her focus needs to be on her health and getting better, not on a job. For her to come home from one shift, and not be able to function, made me feel sick that I let her do this. I went back to the room and talked to Anna. We talked about the day and about working. Anna started crying. I sat with her and told her that maybe this isn't the right time to have a job. I asked her to really listen to her heart and see if she thought she could truly hold down a job. With tears running down her face, she said she's not able to. As sad as this is, it's the truth. She's too sick. I called her manager and told her the story and that at this point, Anna can't work. I explained that we didn't want her to do all the training with Anna and then have Anna have to quit down the road. It was better to pull the plug now. She was so understanding and told Anna that there will be spot ready for her when she's better. I went back and sat on the bed with Anna. I gave her a huge hug and just held her. She was so sad. She said I can't do anything that everyone else can. She said all she wants is to feel better and live a normal life. She's tired of feeling sick every single day. Tired of spending her days in bed. As I sat with her, listening to her and watching her tears fall, I broke. I cried with her. We sat together, holding hands, and cried.
Once I left the room again to let Anna sleep, I went in the kitchen and truly broke down. (I try not to let Anna see how hard it is to watch her like this) Away from Anna, I cried the big ugly tears. The tears that leave your eyes feeling like sandpaper and your face swollen and red. I sobbed. As I sit here right now, I have tears streaming down my face. I am trying so hard to accept the way things are, but it's hard. The other day, I was sitting in the living room, and Caleb came in asking what was wrong with Anna. He said she was laying on the stairs. I went to the basement stairs, and there was Anna, crumpled in a ball. She did not have the strength to walk up a flight of stairs.
I am hoping that once Anna wakes up today, she feels ok. I'm hoping it's one of her good days. She deserves it.
Thank you to all of the people that send me such heartwarming messages and words of encouragement. For sending me information that gives us hope. We appreciate it so much and truly is helping us get through this journey.

So tired!

Spring break is a little more than half over. I can't believe it!! I love being home and love having no schedule but I know it all has to come to an end soon! We have been just trying to relax and enjoy our days off! Here's a little re-cap of our break!

Last Thursday, we spent a family day out in Guildford. We shopped and went for a really nice lunch. It was a long day for Anna and I was worried her body wouldn't be able to cope. She had to take a few rests throughout the day...sitting on a bench while the rest of us went in stores and leaning against a wall when she couldn't go anymore. Overall, though she did great!! That evening, she ended up having an episode in the middle of the night. It wasn't a horrific one, but an episode all the same. She slept most of the following day.

Over the break, Anna decided that she wanted to get a job. She loves to buy things and let's be real, there's no way we can keep up with what the kids want!! She was fortunate to get hired and is now employed!! I am so proud of her but a little scared. I am not sure if her body will co-operate. Once again, though, we are trying to not let this illness rule her life. If she wants to work and earn her own money, then absolutely she can give it a shot! I am praying that it goes smoothly for her! Her first shift is tomorrow....eek!!!

I received a call yesterday from Anna's cardiologist at Children's Hospital. He wants Anna to tell her story. They are starting a research program about dysautonomia as well as a support group I believe. He wants Anna to be a part of it which is so exciting for her. It will give her a bit of a voice. We are waiting for a call from their communications department and then we will go from there!

All day yesterday, Anna was a bit off. She just didn't feel well at all. We are used to these off days, but it's so frustrating. She spent a lot of time just laying in her bed or on the couch. She decided to sleep upstairs in the spare room. At about 3:30 this morning, she came into our room, sick. Here we go again. Another episode. I laid with her and rubbed her as her body fought. I wiped her tears and held her hand. Eventually it ended and Anna fell fast asleep. I laid there, holding her hand, as she slept.

Tryouts

So the email came today. The email that I knew was going to come, but was hoping  wouldn't come for a while. The email saying that rep soccer tryouts are coming up. Usually this email gets me excited for the upcoming season, but this time, I'm just not ready. We need more time. We need more time to try and get Anna well enough to play. More time to give her body rest. More time to build up her confidence. More time to hopefully, miraculously, get rid of dysautonomia. Tryouts are in April. It's coming too fast. I don't want her to get on that field and collapse. I don't want her to get on that field and only last two minutes. I want her to get on that field and show everyone what she's got. Show the world that she is going to fight back and beat this. Go on that field and be like she was a year ago. But I know, deep in my heart, that it's not the same as a year ago.
She had one of her closest friends from her soccer team over the other day. We were standing in the kitchen just talking. Talking about the upcoming season and what their hopes are for it. Talking about who they wanted to be their coach and who they hoped tried out for the team. I loved listening and chiming in. I loved hearing the excitement in Anna's voice. Loved hearing Anna's passion. Loved hearing about their hopes for next season. In the middle of it all, I spoke silently asking God to please let her be well enough to play. Please give her her body back. Please don't take away what she loves.
April will be here before we know it. I'm hoping that a miracle happens before then.

Spring Break

Spring break is finally here! We've been counting down the days for the past couple of weeks.
On Friday evening, we had the awards night for Rep Soccer. I had been asking Anna if she wanted to go for quite a while. Her answer was always no. I had decided that I wasn't going to push it, even though I really wanted her to attend! I worry sometimes that she feels like she is so far removed from her old life. I don't want her to feel that way. She said she didn't feel like she had contributed to the team and didn't feel like she should be with them. I explained that of course she was a part of the team! She was a rock star in their summer tournament and fought hard when she was able to play. She continued playing week after week even though she was getting pulled off the field when her body wouldn't cooperate. She went to games and sat on the sidelines even though she desperately wanted to be on the field. She was a huge contributor!! Thankfully, Thursday night, a teammate of Anna's convinced her to go! I'm always so happy when she does things that she would normally do before this illness attacked her body.
Last night, she went to a friends house to sleep over. I was a bit apprehensive because I know if she does too much, her body will give out. At the same time, she is a 14 year old girl who has to live life! I texted her throughout the night to make sure she was feeling good, and she was fine. Matt and I were just about to head to bed at 11:30 when I get the text that she's not feeling very well....ahhh. I called her cell and we chatted for a bit. She said she thought she was well enough to stay over and was hoping that once she fell asleep, she would be fine. We hung up with the promise that if she started to feel worse, to just call home. 2 am comes, and my cell rings waking Matt and I up from a dead sleep. Dread was the feeling that came to mind. Anna was super sick and needed to come home. Matt jumped into his car while I talked with Anna. She was sick. Dysautonomia makes her so ill. They got home and Anna jumped into bed. She slept until almost noon today.
I am hoping this Spring Break goes well. I'm hoping that Anna has some good days where we can get out and enjoy the days. I'm hoping she has days where she's not vomiting or doesn't have a splitting headache. If she can't, that's ok too. That's her reality.

Day 10

She made it to day 10. Ten days of no episodes then it hits again. I was at work when I got the call. I had my phone glued to me today and when I felt it vibrating in my pocket, I just knew. I closed my eyes and took a breath, then answered the phone. It was my mom. She was sitting with Anna at school and told me I needed to come. I grabbed my coat and bag, told my boss I was leaving, and was out the door in a flash. You would think that the calls would become easier because they happen so often, but it's never easier. It's the same heart wrenching, tummy lurching, sick feeling every single time. I drove down the highway to go pick her up. These highway drives have become a time for me to think about everything that is going on. It gives me time to calm down before I see her. I have learned to drive behind vehicles so I don't race to the school and so that I get there safely.
I got to the school, parked the vehicle, and went inside. They buzz me in right away and Anna is slumped in a chair leaning on my moms shoulder. She has no strength. Her eyes are closed and she is pale. She looked at me, with tears in her eyes, and said I just want to go home. We wheeled her out to the car and put her in the front seat. While we were wheeling her, the coaches for the soccer team were setting up on the field. I watched as Anna looked at them. She looked at the field for a few moments, then looked away. Heartbreaking.
The ride home was hard today. Usually Anna talks to me about the episode and how she is feeling. Today, she slept. She was completely done. Every few moments, one of her limbs would jerk or she would grab her head in pain and I just held on to her hand.
The latest episode is done. I can rest a bit easier for a few days knowing she most likely won't have a full blown attack. But I am sad. Sad for her. Sad for the things that she is missing out on and sad for how much pain and agony she is in. People keep telling me it will get better. I pray that it's true.

8 days

It's been 8 days. 8 days since Anna's last episode. This is the time where my stress level rises and I'm on high alert. I'm waiting for her to collapse in the living room, or for her to wake up in the middle of the night sick as a dog, or to get a call from school that she is not doing well. I hate this. I hate always waiting for the next episode to come.
Since her last episode though, it's been a pretty good week. Adam turned 16...what??? Crazy! I can't believe I have a child that has his own car and can drive! Insane!! We celebrated his birthday by going out for dinner. Anna was having one of her good days, thank goodness! It would have been horrible if she was sick that day. The rest of the week has been pretty low key, except for a lot of driving with Adam! Anna had a few really good days where she was feeling great, but Saturday she hit a wall. She went to bed around 10:00 pm Friday night and slept until around 10:30 Saturday morning. She stayed upstairs for about an hour then went back to sleep. I woke her up at 4:00 pm because we were going to Mass. She was too sick to come. She went back to bed a bit later and slept through until the following morning. She was not awake very many hours on Saturday, but when she was, she was pale and sickly looking. It's so hard seeing her struggle to just keep her eyes open and to try and focus. Some days she just doesn't have anything in her to give.
In some ways, the day to day living is more difficult than the days that she has her episodes. The days where she ends up on the ground, are the days where her illness is visible. These days are horrific and traumatic and exhausting but are the days where I just get to hold her and comfort her and love her. I just get to be her support. The days where she is having a great day, or even just somewhat functional, are so hard. These are the days where I want to be her cheerleader. These are the days where I try and push her. I try to motivate her. I try to get her to push her limits in the hopes that it will help her recover. I don't know if I push too hard or say the wrong things. I don't know. I just know that I am her mom and I have to be the one that stands with her no matter what. The one who pushes even when she pushes back.

Wicked

Can I just say that I absolutely, 100 percent despise dysautonomia!!! I hate how it rips a persons life apart. I hate how it turns a perfectly healthy, active individual into a person writhing in agony, unable to move, trembling like she's having a seizure and trying to breathe. Dysautonmia is wicked and I wish that I would never have heard this word.
Yesterday was supposed to be a good day. It was Anna's last game of the season and she wanted to play. She had participated in some practices beforehand and knew that her body wouldn't let her play a full game, but was hopeful to get out there for a couple of runs on the field and maybe a kick or two, She wanted to take a season that was full of trials and frustration, and end on a high note. She showed up for the pregame warm-up and did as much as she could. She was worried that if she did the full hour of warm-up, her body would be too fatigued to actually play the game.  The game started and eventually Anna was put on the field. I was nervous and excited. I wanted her body to allow her to have a moment of feeling great, a moment of overcoming this, a moment of being a part of a game that she loves. That was not to be. Two minutes of her playing and she was sitting on the sidelines with the team trainer. I was watching like a hawk. Although he has spent a lot of time helping Anna through rough times and I was confident that she was in his care, I was watching, petrified that she was suffering. I watched and begged God to make things ok. That's when I saw him raise his hand to me and call me over. My heart dropped. I knew if he was calling me over, it couldn't be good. I ran across the middle of the field...thank goodness it was half time now! It didn't take me long to get across that field. I dropped to my knees when I saw her and knew she was in rough shape. She was trembling and shaking, Her muscles were spasming and she couldn't catch her breath. She was pale and her hands were ice cold. I tore my jacket off and just laid it over her  jerking legs and hands. We needed to get her out of here and fast. They delayed the game as I ran back across the field. I yelled to Matt that he needed to go help carry Anna off and I would pull the vehicle around. We raced to do what we needed to do. I watched as Anna's body is being carried across. They laid her on the concrete, covered her in blankets, until I got the vehicle closer. They carried her to the car, and laid her in the backseat. We sped away not really knowing what to do. We have been told so many times that we don't need to bring her to the hospital because there is nothing that anyone can do for her. Anna was begging us to take her there. My head was fighting with my heart. I wanted to rush her into the ER instantly and make sure that she was ok. Instead, we drove to the hospital so Anna knew we were there. Then we sat. We sat in the Emergency room parking lot waiting for it to pass. These episodes typically last for about twenty minutes. I was waiting and waiting, trying to will it to stop. Anna would go from crying in pain, to completely silent as her body shook with convulsions. Matt stood at one open door of the vehicle, and me at the other. We talked to her and tried to soothe her. Nothing was helping and my frustration and anger was growing. I was mad because I felt like I couldn't take her in to the hospital because the doctors told me there was no point. It's almost like they get mad at me if I take her there. Do they not realize how horrific it is to stand by and do nothing as your child lays there suffering, begging you to take her in to the hospital?? After about 15 minutes in the parking lot, Matt and I both said, enough is enough. She wasn't getting any better and it was going on for too long. Matt went and got a wheelchair so we could get her into the hospital. We sat her in the chair, covered her in a blanket, and walked into the Emergency Room. We went straight to registration. I told the nurse Anna's diagnosis of dysautonomia, and she had never heard of it. It's not her fault, but once again, makes me feel so hopeless. We got through registration, and were left sitting in the waiting room. Anna was obviously in a tremendous amount of pain and truly suffering. She was shaking all over and every few seconds, her hands would clench into a fist and make jerking movements. Then her legs would jerk out and spasm. Every nurse that walked by looked at her and then looked at me with sympathy in their eyes. We weren't waiting for more than a few minutes, and we were brought into the room. Once again, the nurse and Doctor had not heard about dysautonomia. Her episode lasted for almost an hour. An hour of unbelievable pain. An hour watching my beautiful daughter suffer. An hour of wanting to scream at the top of my lungs for some answers.
So this is why I hate this disease. It takes everything from a person. Reality hit yesterday. Anna's body is not capable of playing the game she loves. Her body is not capable of participating in daily activities. Her body is not capable of living the life she wants to live.  Dysautonomia has taken that away. A chronic illness that no one understands. An invisible illness that is wreaking havoc on a beautiful girl.

BPM

I was expecting to have to wait a long time until our next appointment at Children's Hospital but we got the call fairly quickly. They called me on a Friday and wanted us to bring Anna in the following Monday. We got through the weekend and I was praying that Anna would not collapse at the hospital this time! I was desperate for her to get on that treadmill to see what the heck was going on!!
We made it to Vancouver and waited anxiously in the waiting room at the cardiology clinic. They called Anna's name and brought her in to get her hooked up to all of the monitors. She was ready for the stress test. Anna was sitting on the gurney waiting to go on the treadmill. Her resting heart rate was 86. She stood up, and her heart rate jumped to 130-140 (I can't remember the exact number). I was in shock. How could her heart rate jump so high just by standing!! I guess with dysautonomia this is a pretty standard thing. She jumped on the treadmill and began to walk. She worked herself up to a slow jog and lasted for 8 minutes. Her heart rate was just under 200 BPM. As shocked as I was to see these numbers, it at least brought me some validation that she has some crazy things going on with her body! We sat down with the cardiologist again to go over a few things. He decided to put her on a low dose beta blocker to try and control her heart rate. We were happy to try anything! We left with the prescription in hand and hope that this might actually make a difference in Anna's life.

Roadblocks

I am sitting here anxiously waiting for Anna to come home. We try and let her live her life as normally as possible but sometimes it's very scary letting her go out when I am never sure if she's going to be ok. She went to Vancouver with a friend to do some shopping today. She texted me about an hour ago saying she didn't feel very well and she had been sitting on a chair in the mall for about an hour because she had no strength or no energy. Thankfully, her ride was coming to pick her and her friend up and drive them back to Chilliwack, but my heart is in my throat as I wait. I think one of my biggest fears is that Anna will have one of her episodes when I am not close by or she is with people who don't understand what is happening. I spoke with a lovely lady about a month ago and she spoke very wise words. She said at some point, you just have to trust that she is in God's hands and what will happen, will happen. So I will sit here and type away praying and trusting that she will be fine.
I'll go back to my previous post. I made a Dr's appointment to discuss dysautonomia with my family physician. My goal of the appointment was to try and find someone, anyone, that was local who had any understanding of this diagnosis. I also really wanted Anna to go back and do the stress test on the treadmill. I felt like I couldn't rest easy until that was done. I walked into the appointment with some hope. I sat down in the room and waited for the Dr. The door opened, and in walked a resident Dr. (He was amazing) Anyways, he sat down and asked what he could do for me. I explained that what I really wanted was to speak with a Dr locally who had some knowledge about dysautonomia. I explained that we felt a little bit alone trying to figure this all out and what steps we should take. He was very kind, but he looked at me and said that I would be lucky to find a Dr in all of Western Canada that could help. Once again, I felt like I was punched in the gut. The roadblocks seemed endless. We spoke for quite a while then my Dr came into the room as well. I explained my frustration. He was really good and agreed that Anna should complete the stress test. He said he would get in touch with Children's and get the appointment set up. I left the office encouraged that she would get the stress test done, but discouraged that I couldn't seem to find any answers. I wasn't ready to believe that there was nothing that could be done. So the fight continues.

Laying in the hospital bed

Laying in the hospital once again after being taken there by ambulance.

Picture on the left is of course, children's! The one on the right is during one of her episodes. She is laying on the kitchen floor unable to move and  her hands etc are seized up. This one lasted almost an hour.

Reality bites

After coming home from Children's Hospital with the news that Anna had a chronic illness,we were still in a bit of a daze. As happy as we were that her heart was fine, we couldn't fathom that this was going to be her life. We couldn't imagine a life of these episodes that were happening weekly. We couldn't imagine a life where Anna was basically unable to function on a day to day basis. We couldn't imagine life where so many nights were spent laying on the kitchen floor as Anna's hands and legs seized and trembled, and she couldn't see anything or couldn't hear anything. We couldn't imagine a life where Anna didn't play competitive sports. I remember sitting down one morning while everyone was still sleeping, a few days after her diagnosis, and searching the internet for any information. (The cardiologist at Children's said most doctors are not familiar with this condition so we would need to do our own research). I came across this site and read this article and it completely brought me to tears and this is the moment that reality hit me.(Here is the link if anyone is interested in reading it! http://www.dynakids.org/schools.jsp ) This is the moment where I realized that her life had changed and so had ours. I cried for hours. I sobbed about how life had changed so drastically in such a short amount of time. I cried about how Anna had to spend so much time in a wheelchair because she had no energy to move and no strength to hold her body up. I cried just envisioning a quality of life that was so incredibly different than the life Anna had only months before. I felt robbed of what her life was supposed to be like. This is also the moment when I said to myself that this will not be her life. It may be like this for a short amount of time, but I refuse to believe that this is it. I refuse to believe that there is nothing that we can do to help her at all.The next day I made an appointment with my family Dr.

A day of answers...sort of

Do you ever feel like you are always on edge? Always waiting for the next ball to drop? That's how I feel like I've been living for the past six months. Anna had another episode at school today. I got the call around 1:30 and I rushed out of work. This has been the longest time in between episodes so I wasn't really surprised that I got the call, but it still rips my heart out each time. I think the longer the time passes between episodes I am desperately hoping that she is getting better and she is finally on the road to recovery. Then, bam, reality hits and I know we still have a long way to go.
I'll go back though to my previous post. We finally had a referral to Children's and the date couldn't come soon enough. It was originally booked for January 6, but then got pushed ahead to Dec 22. Thank goodness! I won't bore you with the time before our appointment but just give a snapshot of what it was like. Basically, she had episode after episode. She was taken by ambulance to the hospital numerous times due to severe chest pain and collapsing to the floor. She had an overnight stay in the emergency room. She spent hours curled up in a ball on our kitchen floor unable to move. She had severe sensitivity to noise. She had episodes that looked like a seizure. To sit, as her mom, and watch her go through this, was, and is, so painful.
Dec 22 finally came. We got up early excited to finally get some answers. Anna was scheduled to have an echo cardiogram, ECG and a stress test. On the way to the hospital, I told Anna that this was her day to be fixed and life would be better from here! We arrived at the hospital a couple of hours early....I was so worried we would hit traffic and be late! We spent some time walking around then sat in the food court for a while. Anna started complaining of a headache. I had noticed recently that headaches can sometimes come prior to her having an episode. I decided we should just go and sit in the Cardiac unit and wait for our appointment and I was praying that Anna would be fine. We were sitting in the waiting room, and Anna's name was called. She got up, and Matt and I followed her. The Doctor took her to weigh her and measure her. As she was standing there, she looked at me, said 'I don't feel good", and collapsed. Immediately, she had the attention of all of the medical staff. They put her on a gurney within about ten minutes. Anna does not remember any of it. They brought her to a room and gave her juice and cheese. Once she started to feel a bit better, they completed the ECG and echo cardiogram. She was too ill to do the stress test. Once everything was done, we went to talk to the cardiologist. I remember sitting there, so excited to get some answers and to finally give Anna some relief. The cardiologist sat there, looked at all of us and said, 'You're not going to like what I have to say. Anna has a chronic illness called dysautonomia and there is no treatment or no cure'. I felt like I was punched in the gut. I looked at Anna and could see pure devastation on her face. What we thought was going to be a day of treatment plans and a road to getting better, turned into a day of complete and utter disbelief and shock. We talked a bit more with the Dr and left the office. I don't think reality had hit any of us. Reality came later.

Appointments, appointments....and more appointments!

We were lucky enough to get in to see our family Dr the following week. I really had no clue as to what was going on or what to expect. He told us that Anna needed to go for another ECG and would need to wear a 24 hour holter monitor to monitor her heart. Perfect. I just wanted answers. We went for the ECG the next day and she was booked for her holter a couple of weeks later. Her ECG results came back fine. While we were waiting for her holter, Anna continued on with daily life. She still participated in sports and all other activities. Unfortunately, every time she played soccer, she was being pulled off the field because she was almost collapsing. To see a girl who, a couple of weeks prior, was playing a full game without being subbed off, to a girl who could no longer do a couple of runs up the field, was devastating, frustrating and so confusing! The time came for her to wear the holter. I was praying that she would have an episode while wearing it, but of course, she was completely fine the whole 24 hours! We get the results, and everything came back perfectly. We were of course happy that the test came back clear, however, we felt at a loss. We did not have any answers and we were desperate for them! Fast forward a few weeks, and Anna's episodes seemed to be getting worse. She was collapsing weekly. I was getting calls from her school to come pick her up and she was barely functioning. I was scared to have her leave the house because I never knew when she would collapse. We had an appointment to see a pediatrician. I'll never forget sitting in his office, him looking at Anna, and saying 'Are you sure it's not all in your head?" I was in shock. Here is a 14 year old girl, whose world has been turned upside down, having to listen to a comment like that. We did not go back to see that pediatrician.
At this point, we were either in Emergency or the Dr's office every other week. It was exhausting and beyond frustrating! Every time we were in Emergency, she was hooked up to an ECG machine and every time, borderline prolonged qt showed up. I wanted to scream!!! I just wanted a Dr to tell me what was going on and why she was having these episodes! Nobody could give me any answers.
It is now November and time for basketball tryouts. If you know Anna, she is an athlete and a competitor. She was named MVP last year for the basketball team and was so excited for tryouts. Unfortunately, near the end of practice, we get a call that Anna had an episode and they had called 911. I rushed out the door to meet her at the Abbotsford hospital. She looked beaten and broken down. My heart broke. Thankfully though, this is the point where a referral was made to a cardiologist for B.C. Children's Hospital. I was ecstatic. Finally!

Where it all started

Hey! So it's been over two years since I've last written anything on this blog. I have been contemplating the last couple of weeks on whether or not I should start writing again. I keep telling myself that I won't have the time needed to put into it, but then realized that it doesn't really matter. I can write when I want and if I don't get to it, that's ok too! This past year has been a crazy one and sometimes writing things out, makes things just a little bit clearer to me!
I'll go back to last summer...the summer of 2015. It was a typical summer. The kids were off on vacation, as was I! We did our annual camping trip up to Cultus and had many bbqs with friends. Anna joined a Soccer Tournament Team so we spent a couple of weekends in the U.S. She ended up breaking her wrist in one of the tournaments. Thank goodness it was close enough to Canada that Matt booked it across the border with her and she was seen in our local hospital! Insurance scares me and I had no idea if we were actually covered...I could only envision thousands of dollars in hospital bills! Anyways, she recovered fine from that and we enjoyed the rest of summer.
September came. The beginning of a new school year. Adam started grade 10, Anna grade 9 and Caleb grade 7. With the beginning of a new school year of course brings the new season of sports! Anna made Gold Rep Team for soccer and she was pumped! She had been to a tournament the last weekend of august and played great! The first week in September, I dropped her off for practice as I always do. She's at an age now where I don't have to stay for the practice which is great! I can use the time to get some other stuff done. I had dropped her off and had gone home to do some cleaning. About a half hour of being home, my cell phone rings. The same time as my cell is ringing, my landline starts going off as well. I answer my cell and it's a parent of one of Anna's teammates....she's actually a great friend of ours! Anyways, I answer the phone and am told that Anna is not doing well and we need to get to the field to pick her up. I was a little confused because she was absolutely fine when I had dropped her off! I rushed out of the house and honestly expected her to be absolutely fine by the time I got to the field. I showed up to the soccer pitch and walked towards where she was practicing. I expected her to come walking towards me. Instead, I was met with her coach basically almost carrying her off the field. She had no strength and was almost in a daze. I asked Anna what happened. She said all of a sudden she couldn't see anything and couldn't hear anything. She remembered asking her teammate for help but couldn't actually hear herself speak. She said everything went blank. Apparently Anna was saying things that didn't really make a whole lot of sense. Fortunately her coach was close by and lowered her to the ground before she hit it. I decided to take Anna to the emergency room. I had no idea what had happened. At the ER, she had an ECG. We were sent home and the Dr said he would call later that evening. About 11:00 that night I received the call from the Dr. He said everything looked good. He told us that borderline prolonged qt had shown up, but apparently borderline qt shows up quite often. Unfortunately, we had recently found out that a few people in our family have prolonged qt so I was a bit worried. I thanked the dr and said I would do a follow up with our family physician. This was the beginning of a long road with much heartache and lots of confusion, tears, ambulance rides and a new life for all of us. An episode on the soccer field has changed everything. This is her story.