Taking a chance for Cyrus

I am a real life rez mama. Born and raised Little Black River Full Blood Ojibway girl.  This is where I grew up. Where I experienced almost all my greatest life moments and most of my happiest and saddest times. This is where I grew up and became the person that I am today. The place where I want to raise my children. The place where all my hopes and dreams live and play inside my mind and heart. I could be so happy here for all the rest of my years.

Now there has been dilemma. Life and Health matters have always been hanging above my family since our son Cyrus was born. He was born Achondroplasia which is the most common type of dwarfism in the world. He was also born with a undiagnosed seizure disorder he has lived with since he was 3 months old. He has had other numerous health problems since he was a baby and has been on 2 seizure medications for more then half his life. We have been back and forth from the Children’s hospital of Winnipeg numerous times over the past 4 years of Cy’s life.

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It hasn’t been easy trying to raise a high needs child in the reserve. We are 2 hours away from Winnipeg and half hour from the nearest emergency room in Pine Falls.The basic health services that should be available for my son are not readily available here in our community. There have been many appointments we have missed and have rescheduled due to transportation. We don’t have a vehicle at all times to get him to these appointments and have to ask for rides. We have been using the transportation services out here in Black. But we are not always on good terms with the people that work for the Health Centre. There are so many unfair policies that these places have in place just because we live on reservation.They throw it in our faces every time we get into a transportation disagreement with the coordinator and Health Director. First Nations and Inuit Health also don’t make it any easier when they give these reserve run organizations all these rules and limited budgets to work with. These organizations are supposed to be for the benefit of the patient which doesn’t happen living out here for Cyrus.

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This is the dilemma in my heart. Keep on living a life out here in Black River and see how things continue to unfold. Or take a chance and try move out of Black River and see what the world has to offer to our son Cyrus. Its always been this way. All those times that he would get so sick and would end up in PICU. All those times we said we would move for his benefit. But we never acted on it. He would get better for awhile and things would seem to be alright then not too long then he would be sick again with chest infections. All those times in Winnipeg especially the 3 times he did end up in PICU being there for those long periods of time would put us financially in the hole. We would be happy when he was discharged only to come back home to a pile of bills and the same old problems with the Health Centre.

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I am at a point in our lives where I am so tired of fighting. Fighting for what to get a 60 dollar gas slip to a MRI appointment in Winnipeg. To be given a hard time trying to make my son’s health a priority and to try make his life as comfortable as possible. We are very fortunate to have had some support especially from my papa Oliver and Kathleen (Kat) his partner and some very generous friends. People that have really taken care of us and loved us through all of our hard times. They have taken us to Cy’s medical appointments and helped us out financially throughout all of Cy’s hospital stays. Ronald McDonald House Manitoba is another one that has helped us out while we have stayed for long periods of time when Cy was sick. If it had not been for this organization the hospital would have ate up all our money. These have been 2 of my family’s saving grace while in hospital.

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                                        (Our boys in our room at Ronald McDonald House)

We are in the process now of trying to move from Black River. A person can only take so much and handle so much. Its not been easy raising my son in our community. I have fought so many times and I am tired of struggling to try get my son the right health care he truly deserves. Life should not have to be so hard for someone so little and so innocent.

We now have a new addition to our family. A little girl. We honestly try to be the best parents and yes we have made mistakes but who doesn’t. We are trying to our best now to get Cy our of Black River and closer to Winnipeg. Selkirk is half hour away from Winnipeg and would be ideal for us to live because Chris grew up there. Its where his family lives and works. And he has lots of friends there. We have set up a go fund me page and are praying for a miracle that we can get out of here by the end of August. Now is the time to make a change and changes are not easy especially when you have little ones. This is the most adult decision that I was so scared to make. But Cyrus is so worth it. I know once we move he will have better access to health care and other activities that can help him with his mobility.

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Please feel free to email me at mrs.s.bakosti@outlook.com

Check out our gofundme campaign Help us move closer to Children’s

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.