#leighssyndrome

[danilovesivars]

What now?

Time doesn’t make sense. The days are long and draining and yet I’m doing nothing.  It used to be filled with you. It took you forever to eat your meals (although I guess it’s because it was hard for you to do the work when your brain couldn’t get the messages through).  The house is quiet. You aren’t banging on your pots and pans in the play kitchen or throwing crayons off your table. Containers of play doh just sit there now. Not that you cared as much for the play doh as it was taking the lids on and off the containers. I went out with Miss Kelly, and Miss Amanda and Miss Cat yesterday then saw my friend Michelle. I cried to all of them.  Then I came home and felt lost again. There was still so much of the day left. I felt exhausted and sore all over my body. I took a nap. Napping isn’t right anymore either because I napped with you. If my hair was still in a pony, you’d reach your little hand under my neck and pull my hair towards you. So I made sure to put my hair down yesterday. I can’t even keep track of what day of the week it is. Nothing is comforting. I can’t figure out what to watch on TV. I could do some work but I can’t think up anything creative and it seems like too much mental effort. Reading is hard I’m too easily distracted by the silence. Since when does that make sense? I can’t even find a Twenty One Pilots song that helps. In some ways I guess that’s an okay thing because I would never wish this pain on anyone and to write something that would explain this you’d have to experience it. Which means I have to be the one to write it. And let me tell you Charlie, Mommy is not the writer Tyler Joseph is. I wish I could be. Music has often been a comfort to me. Now I’m pulling songs from Frozen because I don’t know where else to look.  You received a lot of Easter gifts - some stuffies and blankets and chocolates. Losing you on Easter Monday meant you never got to use them. You were like Mommy and were addicted to chocolate. We have so much chocolate now because you had to start every meal with a small piece. Weirdly enough though Mommy has lost interest in chocolate. I’ve had some but it doesn’t taste the same anymore.  I try to talk to you like you are here. I’d love to hear your voice though. You are supposed to be whole in Heaven now so in theory you may even be able to talk. You certainly understood what was being said to you. You did have some words at one point. If in Heaven those lesions are gone from your brain are you chatting up your grandmother? What does it sound like when you talk? I wish we knew Charlie. I wish we knew what you were going through so we could reduce the suffering a little bit. Everyone says it may be better that we didn’t. You experienced a lot - A Blue Jays game, Wonderland, Santa’s Village, Sauble Beach, Daycare - things we probably would have been too afraid to take you to if we knew. But I don’t forget your tired eyes and your sighs. I know now why and I wish I could have helped you through those moments. At least we think we know why. We are still awaiting the genetic testing to confirm it was Leigh’s. I don’t know how I’d feel if they came back still not sure of what it was. Today I’ve tried to do stuff. Daddy got me a new grief journal. Plus I had one I got another day. I tried to look at Disney Cruises. A little getaway. We had hoped to take you to Disney so I thought a cruise might be a nice alternative. I sent out more GoFundMe Thank you’s and but I couldn’t finish anything I set out to do. Somehow after trying all those things it was still only 2 something. That’s when we’d normally be napping. Riley then called home. She almost made it through the whole day. I don’t blame her I can’t get myself to do anything so why should I expect her to? Daddy described this as feeling almost like you’ve lost a limb. Mainly because you always were clinging to Daddy’s shoulder so he quite literally felt like he lost a limb. But I went on to agree because I was thinking something similar. When you lose a limb (modern technology aside) it doesn’t grow back. You can stitch up the area and it will heal up but the actual limb is gone forever. How you move forward in life is completely different. You have to learn to adapt without it. And most of your limbs are pretty important in your daily life. You don’t NEED them to be alive but they are important to your functioning.When they are gone you still can feel pains from where they were. You can still feel your brain try to use them and function as you did.  So we are still here. Trying to continue without an important piece of our family. Moving forward and learning to adapt but trying to accept that you won’t be coming back. We still feel the pain of losing you. We still anticipate seeing you in the hallway when we open the bathroom door, or pulling yourself up to stand by the couch when we are watching TV. I still think I hear your voice when you wake up from a nap then remember you aren't there.  I just don’t know what to do now.  

[letters2leia-blog]

My daughter passed away from Leigh’s Syndrome shortly after her first birthday. It is a mitochondrial disease with no cure. I miss her every single day and just needed somewhere that I could go to write to her, about her, whats on my mind and everything in between.

[danilovesivars]

Not My Baby to Hold

Hey Charlie, I wrote something a little more than a week ago. I closed my laptop and didn’t save it. It was gone. I was exhausted I couldn’t write it again. I’m tired. Tuesday I started feeling very anxious and uneasy. Like I felt like you were lost. Like I didn’t know where you were. Denial was setting back in. Wednesday I took Riley to school but when we got in there we were waiting to talk to her principal and the office was really busy and she got really anxious and broke down. Eventually she did better and I went home. When I got home I got angry. So angry. I couldn’t control he tears. Then the tears turned into screaming so much shouting and screaming from the bottom of my lungs. Eventually I couldn’t breathe. I tried to get outside for air but it didn’t help. Our neighbour was out and came right over and sat with me until I started to calm down a bit. Then the school called because Riley was sick. The rest of the night tears just continued to slowly stream down my face. While I tried to watch tv, while I read, while I slept. Today I feel exhausted and dehydrated. No amount of water seems to be enough. I feel weak and shaky. It won't stop. It’s interesting how every time you cycle into another grief stage it knocks you over so hard. I don’t get it Charlie. I’m very confused. I literally feel like I can’t find you like my brain has decided that’s easier than admitting you are gone. I went from finding comfort in looking at your photos and videos. Your smile made me smile. Now I can’t breathe. I have so much heaviness in my chest. It’s so physically real I wonder how my heart hasn’t stopped. Last week was a lot of things. One day I took Riley to the park. As we approached the park I saw a toddler in the toddler swing. I felt a pang and I looked away and tried not to think about it. Eventually the parents brought him over to where Riley was sitting. Oh Charlie this little boy looked so much like you. Just so much like you. He was about your size, he had light brown hair with little curls. He turned and looked at me his big brown eyes and long eyelashes caught the sunlight and he smiled. For a moment I felt my body out of reflex want to reach for him but my brain knew it wasn’t you. That’ was not my baby to hold. I was overwhelmed. I couldn’t hold in the tears. I tried so hard and probably sounded like I had some hiccups or was hyperventilating. I called Riley and told her we had to leave. She didn’t hesitate she saw I was upset and we headed home. I tried to keep it together but I kept crying. Later that week Riley and I were heading to the store when I saw a dad carrying his little boy on his shoulder like Daddy carried you.They crossed the street ahead of us. As I pulled up to stop at the intersection to make a left hand turned I looked left for traffic that’s when I saw it. The little boy looked up over his dads shoulder and straight into the car and made eye contact as he waved at me. but not a typical toddler wave. A Charlie stiff armed wave. I waved back. “Hi baby” I heard myself say. I cry-laughed the whole way to the store. He was tiny like you. Brown hair but much curlier, brown skinned, brown eyed. It wasn’t my baby to hold but I knew in that moment my baby was sending me a hello. Which brings me to something else from last week. We hung some illustrations around the house. Remember Daddy’s coworker drew pictures of him and Riley? She drew one of you as well. So we framed the one of Riley and the one of you and hung them over the couch. We had to move the mirror. At first I wasn’t sure how I felt about that. You liked to watch TV through the mirror. But we still have the big mirror in the bedroom you liked to watch yourself in. 

We hung another one too in your room. Tia’s daddy made it for us. It’s actually a drawing of my favourite picture of you. He titled it Charlie Forever in Touch. I cried when I saw it. His drawing was also beautiful. But the title. He saw what I see when I look at that picture. You still reaching for me. I actually even started making albums from your pictures - one of you laughing, one of you with the pets, one of you with the grandparents and great grandparents but it started with ones of you forever reaching. Forever in touch. 

It’s amazing how both artists captured your eyes perfectly. I can stare into them forever. Tomorrow is Riley’s birthday. She wanted you to be the special guest on Sunday at her birthday party. When you were in the hospital, the day they told Daddy and I the outlook wasn’t good Mommy had to come home and limit the information we told Riley. We would be assisted with the Child Life specialists the next day. As we were getting in the house she said “I’m going to make Charlie the special guest at my birthday party”. I didn’t know what to do I cried so hard. She insisted you would be okay but I knew. Not because the doctors suspected it. but I knew I could feel it in my gut and I hated it and I kept trying to bury the feeling and deny it. The next morning I was so numb and so confused. We packed some of your favourite toys I tried to find the noisiest ones to wake you up. I got so mad and fixated on finding your Cory Carson when Riley came up to me and said “Mommy... I think Charlie would rather us just be there than you find his Cory” Then she just took charge packing things. I was so proud of her. I think she knew too. I wanted to just throw up.  She’s hoping your elves Glitter and Gar show up in the morning. I think she’s only expecting Glitter. After you passed a few days later she sadly asked if I thought Gar passed too. Garland came after you were born and was connected to you. I think Gar will be here tomorrow. I think he will be sad. He will miss you horribly. I’m not sure what they will say. Because none of this makes any sense not even the elves can explain the pain away. She loves them dearly though. Almost as much as she loved you. You were her whole world. She’s not herself lately and I’m very worried for her. It could be just because I’m hyper alert now. But she does feel lonely. Maybe the elves can help her feel a little bit better and less alone. Maybe they can remind her we are here and you are forever in touch.

[danilovesivars]

I’ll put you on the map, I’ll cure you of disease.

Everything happens for a reason they say. Your death doesn't make sense but maybe there are some things surrounding your death that did happen for a reason.

The above picture is the last picture I took of you before you went to the hospital. It was one whole week before I had to take you in. This was Wednesday, March 22nd. This was a day that felt like it happened for a reason.

You met your brand new baby cousin Harlow. Then we rushed over to the dance studio to get Riley there in time for her Musical Theatre class and then Daddy was going to take you both home so I could stay for tap. But daddy had to take an important client call in the car with someone in another part of the world and that meeting ran WAY longer than he expected. So you and Riley hung out. You got to play with Paige (putting that hat on your head) you got to see Elise and Piper and you got in your snuggles with Miss Kelly.

Miss Jussara is the only person you’ve ever actually reached for when we’ve gone to the studio and like actually tried to get away from me when she came out of class. 

But Miss Kelly I knew you trusted. I could hand you to her and you would just instantly snuggle up with her no fight at all. Like she was family. You didn’t like most people but you had your ways of letting us know you were uncomfortable. With Miss Kelly you didn’t hide away in my shoulder as we approached her and you didn’t cling to me when I would pass you to her. You were comfortable with Miss Kelly. We also got to see her when we’d pick up Riley from school so you knew she was cool. Miss Cat was there, Miss Amanda was there, so many people - Miss Lucy was there telling me how Gabriella didn’t walk until she was about 21 months and look at her now she’s an incredible competitive dancer. Momma felt hope. We had time between Riley’s class and my class so we ran into Miss Jussara’s competitive ballet class and watched their ballet line rehearse their Alice in Wonderland ballet performance. You actually seemed really interested. You were in my lap so I couldn’t see your face but I could see you turn your head and watch where people were going and you seemed very relaxed.  

Daddy felt bad the meeting went as long as it did because Miss Kelly stayed late just to watch you so I could stay in class and Daddy could take his call. I told her she could have pulled me out of class but she didn’t want to. I wonder now if all of that was so you had a chance to be with people who you didn’t loved you since you were born. One last cuddle with Miss Kelly, one last class with Miss Jussara. One last (or in some cases first) hello to Riley’s friends.

Something that bothered me a lot was the day I brought you into the hospital. Everything happened so quickly. within a matter of minutes you were on a table with like 12 people in the room (specialists, doctors, nurses, “learners” in their respective fields) They were all pinning you down because somehow even with your limited amount of oxygen you were fighting like crazy. You did not want those IV’s you did not want that mask. They were blown away because they said for what your oxygen percentage was at they were surprised you were as conscious and responsive as you were. But that’s the thing right? you were fighting it for so long and we never knew. But I hate that the last time you saw my face you were fighting against so many people and all mommy was doing was holding your hand looking at you with fear.

When Mommy was out with Miss Amanda and friends.  Miss Amanda echoed some of Mommy’s feelings. Basically it was a difficult road to get you here, and we already lost a pregnancy before you why give us someone who would be destined to die before he was two? But also echoed the thought that we’d rather have two years with you than none at all.

But another thing she said took a bit longer to hit me but it’s been brewing over the weekend. How happy she was to hear we saw you open your eyes and move a bit the night the Bishop came. We were all hoping for a miracle and that this was the sign it was. But it was also the calm before the storm. Which something in my heart kept telling me. But when you opened your eyes again that evening and they put you in my arms so Daddy and I could talk to you and look you in the face we were so happy to see you after a week and a half of you unconscious. Miss Amanda said at least we got to do that before you went, she was happy the Bishop came to see you and we got to see your eyes one more time.

I had been mad actually that I got that much and nothing more. But over the weekend what Miss Amanda said sat with me. It wasn’t the miracle we wanted and I will never understand why you weren’t worth that miracle. People of different faiths across the city were praying for your recovery. You were anointed twice. The line “if love could have saved you, you would have never died” feels so true so I can’t understand.

But thinking about her words I realized we did get a miracle. The last time you saw my face Daddy was right next to me. And our faces were full of so much joy and gratitude and hope and love. Tearfully happy. and you were in my arms. You were safe and as comfortable as they could make you.  So I can sleep a little easier knowing that the last time you saw me was not standing helplessly while scary people poked and prodded at you but holding you in my arms talking and singing and smiling with Daddy right there. 

Mommy lied that I couldn’t find any twenty one pilots songs that help... sure maybe there isn’t a whole song but they just released their MTV Unplugged show so I sadly put it on and suddenly words started speaking to me again.

One that spoke to me was House of Gold. Tyler wrote the song for his mom. Things he would love to be able to give her. But where it hit me too was as I heard it come on I started singing it but the words coming out of my mouth turned into cries. When I caught my breath for a minute it was in time to hear him say the line. “I'll put you on the map, I’ll cure you of disease”. Our family has had a lot of fights with health or personal lives etc since you’ve been born. Mommy has some things I need to get tested that are likely not anything to worry about but could be something to worry about. So I’m anxious to get the test done to know that it isn’t something because our family can’t handle more grief. We’ve lost a few people over the last year, cancer has clutched on to someone in our family. And Msgr. reminding me that we have a direct line to God now in our family came back into my head with this song. Anyways it brought a lot of emotions because I wanted my son to be able to sing it with. I had learned it on ukulele and just loved the idea of a son loving his mother so much he’d do whatever he could to take care of his mom but then I began to wonder if I caught my breath and heard that line on purpose.

Today as I was sitting here writing this I was listening to my music and on came the intro commentary for House of Gold where Tyler shares that this is what he’d love to give his mom in life. The song didn’t play just the his intro. I felt like you were letting me know you were here for me.

Weirdly enough, I was at the doctors office yesterday. That’s a whole other story but one thing I said was that I was sure my blood pressure was up based on how I was feeling I was super puffy and feeling very much like I did when you were born. When you were born we were stuck in the hospital for 4 days because we couldn't get mommy’s blood pressure under control. 

Yesterday the doctor checked expecting it to be high from the stress of the last nearly month now and the anxiety I had going into the office in the first place.

It was low instead. Like really low. When you came into this world my heart swelled up with so much love my body couldn’t handle it. When you left this world my heart shattered and a part of me died.

House of Gold Twenty One Pilots

She asked me son when I grow old, Will you buy me a house of gold? And when your father turns to stone, will you take care of me? She asked me son when I grow old will you buy me a house of gold and when your father turns to stone, will you take care of me? I will make you queen of everything you see, I’ll put you on the map, I'll cure you of disease. Let’s say we up and left this town  and turned our future upside down We’ll make believe that you and me lived ever after happily

She asked me son when I grow old  Will you buy me a house of gold? And when your father turns to stone will you take care of me? I will make you queen of everything you see  I’ll put you on the map, I’ll cure you of disease. and since we know that dreams are dead and life turns plans up on their head  I will plan to be a bum, so I just might become someone She asked me son when I grow old will you buy me a house of a gold?  And when your father turns to stone  will you take care of me.... I will make you, Queen of everything you see... I’ll put you on the map....  I’ll cure you of disease

[letters2leia-blog]

Dear Leia,

I was cleaning up the room today. Your ofrenda needed to be dusted so I started taking things off of it, one at a time. I took off your urn. I looked at the picture of you on the front of it and smiled. I read the quote on it; “Once I held you in my arms now I hold you in my heart.” I put it down. I took off the beaded blue rosary from Grandma Maggie. I picked up your glasses and held them for a minute. Remembering when we went to Kaiser to get them for you. How much I loved seeing them on you-And most importantly- How they helped you see a little bit better. I grabbed the Coco book and Miguel “Remember Me” pin we got for you on our last trip to Disneyland for Coco Fest. The “Celebrating:The life of Leia” buttons we had gotten from our last two trips from Disneyland.The tiny medical bracelet from when you were born and in the NICU. You were so tiny but oh so strong. I dusted that shelf off and put everything back, one at a time. 

I went to the next shelf. I picked up Clyde Frog, a stuffed frog that was almost as big as you where. I dusted it lightly and gave it a little hug. I grabbed your stuffed Llama Lily that you got from Gramma last Christmas. You loved that thing. Dusting this shelf doesn’t take long, but I take my time. Looking and remembering. I hope you came to visit this Día de Muertos, although I feel you around all the time. I’ll keep adding things to your ofrenda. I love you baby girl.

As long as I’m living, my baby you’ll be. 

Mama