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.