Not the End…

Of all days to try go out and hitch hike but we needed a way to get food and baby milk for our babies. A lot of things led me to this point and to make these decisions and take these chances. There was no other way for us to try get money but to do our taxes. Stupid me didn’t realize I had a ROE instead of T4 which is needed to do taxes. And as a couple we claim together. Well we made our way to St Georges, Manitoba being dropped off by relatives on their way to Winnipeg. The tax lady told us off the hop that she couldn’t file our taxes unless she had the T4. Fuck did I ever feel stupid and angry. Shit what were we going to do? I looked at Chris straight in his eyes all the disappointment showing in my eyes. We walked out of the office and started walking down the highway. Well we were walking together for a few minutes but I just couldn’t pull it together I was hurt and angry. All I kept thinking was to get home to my babies and figure out a way to get things done. I felt hopeless but this time it was different. I had finally had it with everything. How could I be strong I just want it to end these hard trying times. I couldn’t stop crying and was grateful I wore sunglasses. It was cold out and the tears running down my cheeks made me even colder. I took off on Chris I started walking fast thinking all these awful thoughts. I flagged down a guy backing out of his driveway. He took me even farther away from Chris. He was friendly and thank goodness so kind. He offered to take me farther but thanked him and got off at the junction and started walking north down 304 towards the dam. No one picked me up so I just kept walking.

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Manitoba Hydro Dam 304 Powerview Manitoba

I couldn’t believe the roaring sound as I approached the hydro dam. It was my very first time stepping foot on it and it had to be today. I started the dangerous path it was very icy and slippery. I honestly didn’t care at that point if I got hurt. I found a good spot to stand and look over at the roaring rushing waters of the hydro dam. It was slushy and parts of it were frozen and there were big ice chunks just being sloshed around in the freezing water. I started to think of it all. The past year and how I honestly hit total rock bottom in my soul and my life. I could end it all in just one quick moment of falling. What the fuck was I thinking I shook my head. Stupid! How could I Sarah Louise Bird be so selfish? This life is not mine to take. This life also belongs to the people that truly love me. I remembered seeing a post with Senator Murray Sinclair. It read “Quit your whining we have work to do”. I started crying even harder. Feeling like a fool. I had fought so hard even to get to this point I’m not a quitter. Everything just hit me and my babies came into my head. How could I have let myself sink so low and to have let my anger get so strong. This was the aftermath of closing myself so tightly safe inside all of my grief and all of my worrying. I had just lost it all to the angry feelings of losing Kayla and Cy always being so sickly especially at that time to almost lose my baby. My nerves still so raw from that time. I had come to a complete halt on that dam. I saw Cy and his bright eyes and smile. I saw my Christopher and my Vaidah all there looking for me.

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How could I even have let it get this far? Well I couldn’t just stand there the vehicles started coming and this was not the end of my journey home. I knew it was going to be hard but I had to get home. I started making my way across and the walking path was icy. The car’s and trucks didn’t even slow down so I had to jump back onto the walkway holding onto the railing till they passed. I finally made it to other side of the dam I started to think about Chris. I felt so angry at him but what could he do. I kept walking trying to hitch rides but 4 vehicles just passed me then there he was. A grey car with a elderly couple from Sagkeeng north shore with Chris in the back. I found it so funny but still gave Chris the cold shoulder. He was talking to them and just before they dropped us off at broadlands the lady said to me I know how you both feel no one picked us up when we were walking. She knew we had troubles and she knew why we were walking separately too. It was hard not to tell something happened between us. After we thanked them I couldn’t help but think if they could survive hitch hiking and still be together now with a vehicle then we could survive this. This was not the end though.

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Hold onto me until the end.

We walked till a friend from home offered us a ride but in the back of the truck. We both jumped in just wanting to get home to our babies. Well we froze during that drive but we held onto each other for warmth and love. I cried holding onto him and I just wanted to be warm again. I didn’t want to feel this cold in my life right now. Chris got her to stop half ways home. We got out and started jumping around trying to warm up. We started walking once again and I was completely exhausted. We saw a vehicle coming down the long stretch of course it drove by. Then not long after another one and thank God it was friends. They had seen us earlier but were going opposite of us. Now they were on their way home and they took us straight home to our babies. Even though we came home with nothing the babies were happy to have us. All I could think of is that I had all these reasons why I was trying to keep being the way I was. In a way over thinking brings out the logic in me. I started to think of Kayla and how hurt and angry I’ve been about losing her at that time. How those events threw me off track in my life. I cried a lot that evening even with my babies watching me. Not most people can see just how badly their life really gets. They don’t see the light like some people do. I’ve been so fortunate to have had seen this before it was too late. Certain things just happen a certain way in life. I think I needed to get that cold that day to be reminded of the warmth of this life that I truly love so much.

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Written with Love for Kayla

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

Some thoughts on Grieving

I should be happy and you should be happy. We should be living happily with all our loved ones living life. But we all must learn that everything must come to an end. An end to life. Life as we knew it when we thought everything was just fine and normal. When you forget that bad things happen and there is nothing in this world can stop it.

We all deal with this pain in our own ways. There is no right way or wrong way. I guess maybe it would be wrong if your answer to this was self destruction. Sometimes some of us may fall harder then others and there is nothing wrong when you reach out for help. Don’t ever forget that your not alone. It may feel like it. Like your all alone in this dark room where no one can hear you. Believe me there are times when we all feel like we can’t breathe but we are not alone.

When you lose someone that was very close to your heart you lose a piece of yourself that you can’t get back. You just have to learn to cope and try your best to go on living. I know that my loved ones would not want me to stop living. I know that your loved one also would want you to live a happy productive life. Even if it feels like life can’t go on as hard as it is we must.

But what do you do when you are stuck in your mind. You live your daily life doing all the normal things even being happy in some great moments with the other people you love dearly. But then at night when you lay awake and your thoughts keep you awake you replay moments. Then you start to think ok what if we did this? What if we did that? Maybe if? All these questions keeping you up at night. It does eat away at us at night I know it does.

We have all lost someone close to us whether its a baby, sister, brother, mother, father, son, daughter, wife, husband, best friend, cousin, pet. The point is all of us know in ways what we are going through. We get up each day after. We live our lives doing the things we do day to day. We just have no choice in the matter. They are gone and we wake each and every day grieving till its our time.

We can also learn to really live again. To talk to people again. To love again. To chase dreams. All this grieving and loss happens to us all. But we can connect and share our thoughts out in the open. We can tell other people that are going through the same feelings as you are that its going to be ok. That its not a bad thing to live again happy.

Some of us may be stuck right now in grief. Where it feels like it will not end. We may also be scared to try be happy again. I feel like this sometimes. Be kind to yourself during these times. Take time to eat. Take time to cry. Take time out. Do what you need to do to make yourself comfortable. Do what you need to do to get through these hard days. Just try really hard to remember that all days are not going to be like this.

 

 

The biggest storm of my life…

I feel deeply…My heart is broken. I know though that I do not walk this lonely road alone. My family, other families, and so many others live with the pain of losing someone close to them.
Lately in this world it has been many people right now facing tragedies. So many of these losses are close to home in neighboring communities and towns. Missing children and other tragedies where people have just left without any explanation at all. The ones left behind left with so many questions.
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I am sharing my story in the recent loss of my young sister Kayla Bird who passed away on February 24 in Winnipeg. Our Kayla left us so fast that we had no time to really process what was going on. She got very sick very fast. One minute she was enjoying her life with the love of her life. Thinking she would return to her 3 beautiful daughters. She was only 25 a young hardworking mother. Then that Sunday on February 15 she started getting sick throwing up. She was taken by emergency helicopter from the community of Pauingassi where she made her life with her partner and children on February 16. This is the day that changed our whole family’s lives forever.
Nothing we could have done would have stopped this sickness. It was the flu compacted with double pneumonia that took her from all of us. The way they explained it to us that day on February 24th. We all sat around that table scared and heartbroken. Even before Dr. Smith and the rest of the medical team all came in the room we all knew. Our parents kept us girls close that day. They wanted us their beside them and they wanted us girls, Mikey and his parents to hear everything they had to say and have our questions answered. As we sat around the table in the MICU meeting room I couldn’t even lift my head when they spoke. They told us in detail what had happened to her beautiful little body. They didn’t understand why she got sick like this. They said it shouldn’t have happened but it did. There was nothing left to do but to take our sweet sister off life support. My sisters were crying and here I am trying to be the strong one the oldest sister. Just felt like a dream. Like my legs were like rubber walking into Kayla’s room with all the family.
This is the most heartbreaking experience I have ever felt and I know everyone in that room all felt the exact same way as me. We prayed with her and we spoke our words of love to her before they started shutting off all the machines. Its the most fucking helpless feeling in the world.Wanting to hold my whole family together but I couldn’t even stand up. We just sat there silently weeping trying to hold it together then the nurse checks her heartbeat. She’s gone.Was this really happening? Were we really sitting here together? Fuck all the things going through my head. I don’t know how we held it together so good but we did. I just don’t know how we even made it through those days.
On the days before Kayla was brought home to Black River for services my Cyrus’s sickness had gotten worse. Chris took him to Pine Falls on February 16th for a Doctors appointment. I sent in Chris alone with Cyrus that day thinking that if they gave me medications and checked him out good that I would be able to make him better at home. I thought I would be able to help with my sister’s wake and funeral and I thought I knew I could make him better. But less then a few hours later I was at Pine Falls emergency arguing with the Doctors and nurses. Trying to get him to Children’s because of how much distress he was in. Plus they did not know how to care for a child. They should have sent him off right away instead of trying to treat him.I was mad at this point like why now baby? Why is this happening? Plus I felt like the most awful mom in the world for not seeing how badly my son had gotten sick and I blamed myself. I was trying to help prepare for my sister’s wake and I thought I was doing a good job of taking care of my baby. Little did I know what battle God the Creator had laid ahead of me.
That night we got to the Children’s ER he had gotten so bad that he was in major distress in his lungs. They had to take him the resuscitation room to try get his oxygen levels and breathing back to normal which took long to get under control. We were finally transferred to PICU where there were other sick babies with flu like symtoms. The first few days in PICU were some of the hardest days of my life. My body was in so much pain. I was still in shock about losing my sister. Now I was wondering what in the hell was going in our lives.
I stood by my baby while he fought RSV, Corona Virus and pneumonia in both his little lungs. He was on CPAP machines for a week which was spent in PICU. During this time I was a total mess and I drifted day to day with no energy at all. I was scared that I was going to experience losing my son and my sister at the same time. I became very angry with God at this time. I started questioning my faith. I asked Him why are you doing this to me at this time. Why do I have to lose my sister and have my son very sick at the same time struggling to breathe. It took a good slap in the face from my aunt Sue to set me straight and bring me back up from the drowning waters. After this day I started to fight again to stay afloat with my husband and our sons. To stand strong in this storm in my life even if my heart was broken from losing Kayla.
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I made the decision on February 29th to miss her funeral. At this time Cyrus was not yet stable enough for me to leave him. How could I leave my little sunshine when he needed his mommy the most. I stayed with him all that day crying when we were alone and given some privacy. I could not get my parents, my nieces, my nephews, my sisters, Mikey and his parents or Kayla out of my mind that day. I tried hard not to think of it as being torn or ripped apart but it was.
I am so grateful that during this time my husband was able to get a hotel room at a discount from the Ronald McDonald house at the Canad Inns HSC the first 3 nights. I took a few breaks here during the first few days. Then on February 29th the day of the funeral Ronald McDonald house had a room available for us. Chris kept our oldest boy with him during this time. Walking back and forth from the house to the hospital once in awhile trading places with me so I could have a break. Staying there during the time Cyrus was in hospital was such a relief in our lives. We were not financially ready for a crisis like this in our lives. The caring staff and house family made our stay comfortable and feel like we had a home.
Cyrus was released on March 8th after a hard sickness of RSV, Corona Virus, pneumonia and a bone marrow biopsy that hurt his hip and bad back because of a cancer scare. We were only allowed full discharge because we had to take him to 3 medical appointments before we left Winnipeg. So we went home to the Ronald McDonald house with our Cyrus and our family was whole once again. Christopher’s birthday was that Saturday on March 12th. We were trying to figure out a way to hold our oldest son’s 5th birthday and Cyrus’s last 2 appointments were on that Friday. We had no money to throw our son the birthday he deserved and we wanted to have something good for our son after him experiencing so much at such a tender age. That is when Wendy one of the Ronald McDonald house employee’s stepped in and took charge of his birthday. We were just going to try put a couple snack trays and cake but she went above and beyond her job. They threw Christopher one of the best birthdays ever. Complete with a Transformers Cake, balloons, awesome food and the company of Ronald McDonald himself. It just all fell into place and we felt like we won the lottery. They helped us in a time of complete chaos in our lives.
They gave me a place to quietly mourn my sister. A place where I could be a mom and just sit around with my family. They also gave me space when I needed to process all the stuff going on in my life and I will always be forever grateful for all the years of my life to these people of the Ronald McDonald house of Winnipeg.
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We returned home on March 11th late in the evening from the Ronald McDonald house. I was scared at that point to return home. I knew once I got home it was all going to hit me. Everything that I had been through and the loss of my sister. Its been a month and 6 days since we lost my sister. Its not getting any easier right now. My nieces, Mikey, our parents, my sisters and her in laws are all grieving. We have all been keeping close together and staying in touch as best as we can. We have found comfort in one another and I am glad that we can talk, cry, laugh and remember Kayla.
I also know that we are not the only family grieving in this sad world. There was another person that died at St. Boniface just a few days before Kayla from the flu. He was also a young man but we know only that of him. There were 3 deaths in my community and countless others in neighboring communities. There were tragedies all over the news of young people going missing and being found dead. I felt the hurt that these families were going through. I know my family and all these families share the heartbreak of losing a loved one.
This is just my story about the loss of my sister and my journey with my family through my son’s sickness. I was to share to show that no matter what happens in our lives even when there is complete chaos you can come out the other end stronger then you were before. A new person that can get through the storms of life. And that we are not all really alone in our grief. There are many that walk this lonely road and try to take comfort knowing there are others that feel the same heartbreak you feel on a daily basis. God Bless.

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.

 

 

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.