Hard Times Ahead

 

Nothing can ever prepare you for raising a sick child. Ever.

He was born and we were relieved that he seemed to be alright. He did have some problems in the beginning once we brought him home. He did not latch properly to my breast or a bottle. We spoke to his pediatrician and she just told us we should try a different bottle. I still tried hard every day though to breast feed and I would get some moments where he would get a good flow then start struggling to latch and to breathe while on my breast. So I ended up using playtex bottles and kept him fed. Everything else just seemed so normal. We were living day to day raising our two boys together.

I can’t remember the date or time  that Cyrus first went blue and stopped breathing. I can’t even remember anything that happened that day. I know it was around 10 pm. We were getting our boys ready for bed. I was giving him a bath and that’s the very first episode we saw.

Everything is all blurred together. I know we got an ambulance and arrived at Pine Falls. The doctor and nurses there didn’t know what to do for him so they called Children’s Hospital of Winnipeg. During this time he had 2 major episodes and the first one he had I ran. I ran outside to my dad screaming and crying. He thought Cyrus had gone then. He told me to snap out of it. Kind of gave me shit I guess to make me come back to my senses. It wasn’t long after this that we took our first of many ambulance rides to Winnipeg.

That night we arrived there we were not prepared at all for what was all about to take place that long night. Needles, swabs, and a awful urine catheter. I stayed every test he took and I forced myself to watch even though I was scared shitless. Chris would go take his smoke breaks and leave when we would start arguing. I flat out refused to leave my baby. I know he was more traumatized then me by everything that was going on. I wanted to trade places with him every time he stopped breathing and every scream of pain he cried I begged God to let me.

By the early morning hours they were trying to get a I.V into his vein. They couldn’t get a good vein and Cyrus was in distress and so was I. I grabbed him away from the doctor and nurse and into my arms and held him so close to my body and almost ran. The nurse talked to me and she understood just right where I was in that moment. Her kind words and soft angelic voice that brought me back to reality will always be with me. She was there for me when I thought I had no one else. And she understood why  I wanted to protect my baby but she also made me realize why we were there and why it had to be done. To find out what was happening to our baby.

No one can ever say that you can prepare for stuff like this. We were not prepared to leave Christopher with anyone. We were not prepared for Cyrus to be here like this. We were not at all physically, emotionally or spiritually prepared for any of this.

My heart was being torn into so many places. My mind was everywhere and no matter how much I tried to relax to calm down I couldn’t. I felt like I was on auto pilot and I know at the same time even though he didn’t say anything I knew Chris was falling apart just like me.

They were able to let Cyrus rest and moved him from the E.R. to the P.I.C.U. Family and Friends started coming to check on him and us. Offered support and prayers and asked what was wrong with Cyrus. We couldn’t tell them anything expect that they were episodes of him stopping breathing and that the Doctors and staff were running tests.

We saw so much specialists during the first hospital stay. We saw a oxygen specialist because when he would have these episodes his oxygen levels would drop right down to the 20’s. We saw Neurosurgery and Neurologists because they suspected it had something to do with his Achondroplasia. They did a MRI with him under sedation. Some swelling showed up on the left part of his brain but not enough for major surgery. It would be watched. They also thought it could be pinching in his neck where the spinal cord goes into the brain. Nothing was showing up. So what caused these apneic  episodes? They didn’t know and had no choice but to send us home because he improved.

I can’t remember how much days there were this hospital visit. I know we left Christopher with my parents. Which was really hard on both Chris and I. I know it was not easy on him either. He was only 18 months old and still on the bottle. Still needed to feel daddy and mommy’s skin to fall asleep. He was still a baby to us and now he had some fast growing up to do. This is where I started to get depressed and slowly falling apart inside. He saw everything too when the first one happened. He saw us screaming and freaking out. He saw his brother like that and didn’t even understand what was going on. My big baby.

When we came home it was like everything would go back to normal. We started to be very cautious with our boy. I returned to work not long after and everything seemed like it was falling back into place. We thought our life had returned to normal and that all that was behind us was done with.

Then 2012 came and was hard. 2013 ended up being the hardest year of our lives.

 

 

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The beginning of us…

I’ve been thinking long and hard about what I wanted my first blog post to be about. I have so many stories that I want to share and I don’t want to just start posting any one of them. The chapters in my life don’t follow any guide lines and I most certainly did things my own way at my own pace.

I’ve loved and I’ve lost. I have fallen many times in my journey but I have also gotten up never giving up. I am learning to forgive and learning to live. I have learned to say sorry even though its hard sometimes. Most of my life’s greatest life lessons have been shared with my husband and our 2 sons. Where it all started from to these moments in life and I am like wow we made it together. They are a big part of my story and with them sharing our journey together has shaped me the person I am and the person I am continuing to become.

Way before them there was a sad single independent native girl. Just wandering through life aimlessly. I didn’t have any goals or ambitions and I was very depressed. I was still living with my parents which was not a healthy choice but I stayed. I worked during the weekdays and sometimes partied during the weekends. Thought I was having such the time of my life getting wasted. I tried to make my heart forget that it needed to be loved and I closed myself off to the world.

But that all started to change. Little did I know back in 2009 Chris was going through some major life changes himself. He lost one of his best friends Trevor in Edmonton. All these events that were taking place in our lives separately were working towards us coming together. He ended up staying in Manigotagan a small community about half hour away from Black River after they laid Trevor to rest there.

He ended up getting hired at Moppa’s store which is owned by my aunty and uncle. We slowly became sort of familiar with each other but in late November and Early December things started to change. We became friends and with a little push from our close friend we started becoming more then friends.

We became official New Years eve 2010. He took me out to the local bar and then to a social in Manigo. I found my forever home that night and never wanted to leave him after that. We knew after being together for a few months that what we both wanted was a family. We worked hard and finally I became pregnant with our first born son. Christopher a average height baby came into this world on March 12, 2011 by emergency c-section after 9 failed inducements. I was so traumatized by his entrance but so in love with him at the same time that we always used condoms after. This is why I know exactly when I became pregnant with our 2nd son Cyrus.

I found out on October 31st that we were going to have another baby. I was kind of scared and was in shock. My children were going to be 15 months apart. I felt like I was cheating Christopher out of being a baby and was very hard on myself during this pregnancy in the beginning.

It was during a fetal assessment at the Woman’s hospital in Winnipeg requested from our geneticist that I found out Cyrus was going to be a little person. It was a very long ultrasound and they measured his long bones and knew right away that he was going to be small too because his bones were short and not long like a average height person. I cried after the appointment. I cried because deep down inside my heart at that moment that my baby’s life was going to be a little harder and different. I kept myself busy with Christopher before Cyrus came. Chris and I were still enjoying being first time parents to him. I know for sure I was worried about him even before he was born.

Our Cyrus came into the world on June 15th 2012 at the Woman’s hospital with a pediatrician and nurses waiting for him. They wanted to be prepared in case there were any complications when he was born. Other then rapid beating he was perfect. He had a good weight and he was so beautiful. He too had a traumatic entrance being ripped from my body. They had to push on me and pull him out and he when his head came through it made a loud popping noise. This was one of the strangest things I have ever heard in my life. After the main delivery doctor left the operating room while they were stitching me up a younger male doctor made a sarcastic remark about how my baby’s head was the biggest head he had ever seen. I didn’t make a fuss as I was drugged out and worried about my baby. I knew there would always be comments or rude remarks were ahead of us long ago.

The pediatric neurologist  that came to see Cyrus with her intern came to see us 2 days after he was born. She came to look him over and do some tests on him. The last test we took before we could be released was a head ultrasound to check for liquid on the brain. He passed all his tests and we were sent on our way to join his big brother and daddy at home.

We got into a routine and it wasn’t so hard. My Cyrus was a good baby and so easy to love and look after. We thought everything was going to be normal and we were so lucky to have him healthy. That all changed when he was 3 months old. We were getting ready for bed and I got up to give Cyrus his night time bath. I was just doing the normal thing I filled the tub tested the water and put my baby in. I was just washing his hair and then just a blank stare, no movement, and he stopped breathing. He changed color so fast that I didn’t know what to do. Then I screamed ran him to his dad lifeless. I was like how in the fuck can this be happening. Whats wrong with my baby? Is he dead? I ran to my neighbors screaming yelling for them to call a ambulance. Screaming my baby is dying!

The first of many ambulance rides was called for us that night. We had to get Christopher a sitter and try figure out what in the hell to do in such a short rushed amount of time. I totally lost it and tried to remain calm at the same time. During these hard times between the first seizure to his last seizure in November 2014 are times that we were tested. We fell apart, we had joy and happiness, we had total chaos, we had sweet cherished moments of calm. We had no choice but to learn to live in the moment. We never made plans and we always stayed together just in case. We honestly at times didn’t know if we would get to keep him. This is a time where we found some spirituality and learned to pray again to a higher power. It was not a easy journey to get past those times but we managed to make it together as a family.

The stories I am going to be sharing will always be what I know. Someone very dear to my heart told me long time ago write what you know. These stories are from my heart and my life. My life is my family. My life is where I am and that is here in my community raising a family with the man I love.