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.