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Scarlett

It was a regular pregnancy. The only difference between my daughter and my 2 previous pregnancies with boys was that I was more tired, I was more depleted of all my nutrients as she was needing exactly everything I had since she was a girl, and I was chasing two kids along with all the pregnancy sickness throughout. Oct. 28 of 2021 was the last time we were able to go on a date before we were going to have 3 children running our lives. We were heading back to Regina after a nice relaxing supper in the small town of Lumsden. I wanted to go to superstore for the Halloween deals that they were having on clearance and then to go home to bed as I was tired. We were shopping and as I was walking from the clothing section to the small flower booth, I was having extreme trouble breathing, to the point where I collapsed, and I could not breath without a shooting pain in my chest where it felt like knives stabbing me. Luckily, there were off-duty nurses and doctors shopping late at night that they ended up helping me and calling 911 and they were helping to keep my airways open and holding me up so I could breathe. When we got to the hospital it was a whirlwind of tests and needing the laughing gas on to alleviate the pain. After 2.5 days of tests and waiting they figured that the only way to get the pain away is to deliver but they wanted to wait until I hit the 36-week mark. After inducing labor with everything that they had, I ended up being in Labor for 60 hours. It was intense and I was bent on having my daughter vaginally unless she was going to lose her life. It was finally time to push and when I was pushing they realized that her feet were coming first, it turns out that whole time my daughter ended up becoming breach when I was walking in Superstore and with her turning a complete 180 degrees in an extremely short amount of time she ended up pushing on my lungs making it painful to breath. The whole pregnancy up until that point, she was in the regular birthing position

 

No one had given me an ultrasound in the 2.5 days of tests. After the resident doctor had realized she was breach, and her heart rate was going down she told me we had to do an emergency cesarean and we needed to do it now. Later I found out if we had been 5 more minutes longer my daughter would not be here. They cut me open and ended up having to rip me open more since she was stuck. She was without oxygen for around a minute. She never went to the NICU but we did spend 3 days in the mother baby unit. After that I never let her go. I refused the nurses to do anything without my being awake. She was skin to skin on me and breastfeeding constantly for the first 5 months of her life. I got hit with extreme postpartum depression and it got scary and really dark so many times. Being a mom in that dark place with a newborn who still continues to use your body to keep her alive and you are still healing from a major surgery including also having 2 other children to be there for was extremely difficult.

 

Due to my post-partum and my stubbornness to not take any medications for it, I missed some signs that were a bit different with my daughter compared to my boys. My mom noticed them and later told me. My daughter would have this deer in the headlights look and she still has it to this day, I would write it off as it is her dad's look like her dad would look at me like a deer in the headlights often when I was talking and so would our daughter, it turns out those were Absent Seizures that she was having. She was not meeting the milestones that were age proper. She was lifting her head up but at a very delayed rate. She rolled over late, and everything she did was very delayed. She was fascinated with her hands and that was the only thing that she did consistently. She was in the newborn baby stage for over a year. We were with a program Kids First and I was with them with my other 2 children when they were first born. Kids First had put in a referral for Scarlett to get into ECIP (Early Childhood Intervention Program) but that took a while to get into. Until then we had some supports but not for her specific needs, which we weren't even sure of at this point. We ended up looking into Autism and going that route as we were waiting for all the waitlists (not realizing that the next 3 years will be all about waitlists and waiting periods of extremely long amounts of times for serious things that needed to be dealt with early on in a child's life to help them in the best way). We ended up getting Scarlett a referral into the Children’s program at the Wascana Rehab Center in Regina as well. During the waiting period we had an initial appointment with a private assessment center in Regina as the waitlist for public Child and Youth at the time was 2-4 years and private was 1-2 years. Scarlett was assessed for Autism at 10 months old and even at 10 months old they could see some signs for Autism. They then put us on another waitlist to be seen by someone to do the autism assessment.

 

I was reading up and asking questions on how to handle an autistic child and how they see the world, I wanted to make my daughter's life as enjoyable for her as possible just like her two older brothers have had. I just lived in the moment with my kids and made the most of every day. At this point I was also a single mom, so I was also dealing with my emotions and feelings towards a huge hurt inside of me on top of trying to figure out how to better my daughter's life and keep my boys knowing just how much I love them.

 

Shortly after the first appointment for Autism, 3 months after... I was having Christmas at my house and her dad was holding her and yelled out super worried saying he thinks she just had a seizure. Him nor I nor either of our families have seizures nor have neither of us seen one in person but now knowing... you will know when you see one. I ended up coming and grabbing her from him not really believing him and an hour after that one she had one in front of me, her eyes rolled back into her head and her arms closed in tightly towards her simultaneously. That is when both mine and my ex's lives flashed before our eyes. We have been in and out of hospitals trying to get help to figure it all out. My daughter's seizures do not last long so only a few nurses have seen them and the EEG's have caught some. We waited in the General Hospital in Regina for over 12 hours on multiple occasions as my daughter was having seizures and we were never able to get into a room. After 3 times of trying to get into the General Hospital and the EMS being called my daughter ended up having a mild stroke at home while I was feeding her in her highchair. We gave up on the General Hospital, so we ended up leaving and I went to the Moose Jaw Hospital. They saw her have a seizure in her car seat in the Emergency waiting room and at once we were brought in and brought up to the pediatric unit. That was our first stay in a hospital and over the course of the next 12 months we would be in Hospitals all over Saskatchewan 23 times. Scarlett and I rung in the new year in the Moose Jaw Pediatric Unit at the Hospital, that was how our year started and every month since then 1-3 times a month we have travelled to her medical appointments and procedures to Saskatoon not including all the ones in Regina. We are currently on a waitlist to be seen in Toronto at Sick Kids as Saskatoons help has come to a standstill as there is nothing more that they can do for Scarlett.


She would have these turning blue spells and would just stop breathing on 3 occasions with nothing in her mouth or throat, but she would just stop breathing. We finally were able to get an ECG after being on the waitlist for 13 months. We are still awaiting those results.

Before Scarlett’s stroke she was talking quite a bit of words and saying things and babbling lots. It's been 15 months since her stroke and she just said her first words 3 weeks ago Cat, Dad, Baby and recently as of a couple of days ago, Mom. Since June of 2023 I have been learning Sign Language and teaching her as well as with her not talking I had to come to terms with the reality that there was a high chance of my daughter never speaking again and I wanted her to have a way to communicate her needs and her wants and not go through her life with no form of communication. I want her to feel heard no matter what and I never want her to feel silenced. I have been learning lots and teaching my other 2 children as well. We currently have 2 ASL workers from 'Saskatchewan Deaf and Hard of Hearing Services' that come into my home to do home visits every 2 weeks with Scarlett and we learn so much. They bring cheat sheets I call them and booklets, videos, and all the things to make learning ASL easier on myself and my children and anyone who enters my home who wants an opportunity to talk to Scarlett. I am hoping soon to take an actual ASL class so I can be fluent in it and teach Scarlett easier as even though she has said a few words these last few weeks there is still a high probability of her not speaking fluently. It is harder to teach her as its hard to grasp her attention and have her do the signs but with repetition is has come along quite well and for anyone who is around her they get to know her signs over time.

 

Scarlett has had MRI, CT scans, 7 EEG's, ECG, Oxygen Flow Test, Hearing Surgery, Eye Drops Procedures, Barium Swallow Test, Multiple Blood Draws. Daily PT, OT, and Dietician plans to follow. Weekly visits from ECIP, ASL workers. We are constantly researching and looking into things to make her life easier and advocating for her in absolutely every way possible.

We got into the Children’s Program at Wascana Rehab in January of 2022. We got into ECIP in November of 2022. Currently to this day, my daughter’s team consists of a lot of professionals, individuals and organizations that I have researched and called about and it's all due to my consistent advocating and being her voice since she does not have one, as well as the support from the community and other people who have taught me so much about different things to look into. She has a Family Doctor, Pediatrician, Developmental Pediatrician, Pediatric Neurologist, Eye Surgeon, ENT, ECIP worker, Naturopathic Doctor, Traditional Herbalist, Dietician, Physical Therapist, Occupational Therapist, Speech-Language Pathologist, Psychologist, 2x ASL workers, Metabolic's, CLSD, 6 Registered Nurses for different specialties, Jim Pattison Children’s Hospital Medical Social Worker, Dr. F. H. Wigmore Regional Hospital Medical Social Worker, Regina General Hospital Medical Social Worker, Specialized Pediatric Dentist, Catholic Family Services, Public Health Nurse x2 for specialized home visits. Awaiting a Pediatric Cardiologist, awaiting a Pediatric Epileptologist, awaiting bloodwork from different diseases, disabilities, disorders, and multiple genetic testing. We are currently doing the testing for her swallow tests as well as she has been really regressing in her food intake and how she eats and drinks.

 

Since this all began, I was on my maternity leave. I was not able to return due to no childcare for a medical child to this extent. We were able to get into YMCA with a one-on-one worker, but it just was not able to work out as her medical needs are too complex to work there. We are on the waitlists for both Hopes Homes in Regina, which are daycare centers made for medically complex children but the waitlist for both is around 7 years as my daughter's needs are exceedingly high so she will take longer to get in. My only choice is in home childcare but that is extremely expensive, especially when I need a medical professional, with all her complexities. There are no options for parents like me especially with my one income of child tax and child support. I barely afford food at times for myself, and my 3 children let alone someone to come in while I go to work just for one child. The only reason I have not lost my home, the reason I have food on the table, the reason I am able to get to all my daughter’s medical appointments, the reason I am still able to keep my family afloat in these unsure times is from the community and the people! I would not have gotten as far as I have if it weren't for the people who were put into my path and who have given so generously to myself and my children. The Little Wonders Program is absolutely amazing, and it has been so incredible to meet other moms who get the struggles I go through and the insanity that lives in my head of having a child with extra needs. I have had the luxury of staying at Ronald McDonald House in Saskatoon for all our medical appointments and stays, in which I call it our home away from home, and my children all feel safe and welcome there. I have had help from Kinsmen Telemiracle. I have had help from Twice Loved Children’s Consignment Boutique in Regina who have put money together from their sales as well as putting together a pasta night for my daughter when this all started. I have had good friends put together fundraisers for my daughter as well. I have so much recycling that I was able to collect from family members, friends, and complete strangers in the community. The amazing and wonderful people that helped us during Christmas time when we were in the hospital in Saskatoon. I have had so much help from my local community on Facebook of my fellow Regina Moms Chat group. They have helped me with so much information and help and they have been through it all with me, they helped me when I had no food in my house for my kids and even when I was not able to afford gas to get to my daughters' medical appointments. The help I have received during these scary times is unmatched and will forever hold space in my heart and soul! You do not realize how good you have it with non medical children until one of your children become medical.

 

She is diagnosed with Generalized Epilepsy (Febrile Seizures, Atonic Seizures, Myoclonic Seizures, Absent Seizures) , Global Developmental Delays, she has autism as well, but it cannot be for sure diagnosed until the seizures stop. She is unresponsive to medication when it comes to her Epilepsy. She has uncontrolled seizures, and she is unmedicated for her seizures. We have tried so many medications and they have never stopped her seizures completely. The neurologist wanted her off her last medication as they believed she was seizure free and she is not, she is currently to date having 10-35 seizures a day. We are currently only doing CBD with THC and that is what has helped her sit up, eat, crawl, stand and then eventually walk. She was also seizure free for 3 weeks when we first started CBD in 2023! She is not able to leave my home unless it's for a medical reason, or when I want to let her experience something at a safe time. Her seizures are triggered by sensory things. Too bright of lights, florescent lights, too much noise, big crowds of people, too much stimulation. They do not know why she is having seizures still and we may never know, but I am hopeful as I will not stop until my daughter has a better quality of life and currently being in my home all the time is not a quality of life that she was meant for, she was made to see so much more of the world than my home and hospitals and doctors' offices and medical professionals. I will continue to fight to find new ways to give her the best life possible and one day I just know it, she will be running alongside her brothers playing outside.

 

Being a parent to a non-medical child is tough. Being a parent to a medical child is unrelatable in so many ways where it makes you lose sleep, stress beyond repair sometimes, you cry so much, your own self gets put last and your whole being is poured into this child to let them know just how amazing and loved that they are. Trying to keep your child alive is a nightmare I wish upon no one. Advocating for your child in a system that is so broken is painful and at times feels likes it's too broken to fix or even feel like you are being heard and listened to. I feel so beyond exhausted that I do not really remember what life was like before all these unfamiliar terms and specialists and daily emails I must respond to or the phone calls to answer or the things to book in one of my 4 calendars. The seizures to keep track of and the moods, the medications, and the withdrawals to the reactions to different things. On top of the common cold always wondering if it could be something else... I used to think a cold was a cold, but I do not think like that anymore with my daughter. I am constantly worried about everything for her just as I am about my other 2 children, with a medical child it is just different. I love all 3 of my children equally. This life of being a medical parent just takes a whole lot more out of absolutely everything I have spiritually, physically, mentally, emotionally and financially.

 

On the less scary side of my daughter's life, she has the most beautiful and incredible bond with her brothers. With her one brother she has a wild and loud energy type of relationship with him, and she loves everything he does when it's during the day and when she is not tired. She wants every toy that he plays with, and she gets upset when he does not share, and he gets upset when she will not share. With her other brother he is the calm in the storm, and she just waddles over to him when he is lying down and she cuddles with him, she loves his energy and is just so calm with him. Her favorite is when you are seen but you are not heard. She is amazing at expressing what she needs, and she absolutely loves signing songs We have so many ASL songs that we learn, and it is such a beautiful sight to see. She thinks dogs are hilarious. She loves sitting in soft grass. For the longest time her and her dad would have their own babble language and it was the cutest. She is a daddy's girl, and she just loves when she is around him. Her favorite thing to do with her dad is sit in the toddler carrier against him and pull his chest hair or his beard. Even though she is not able to get out often she is so intrigued by the outside world and other people and the things going on outside. She is obsessed with water, and I genuinely believe that if she could choose, she would be a mermaid for sure just to live in the water. Keeping her from making puddles of anything liquid in the house is a task in itself. Her personality is just so pure and innocent. She has the most unique way of drawing you in. Through everything she has gone through it is incredible that she is the happy and bubbly little girl that she is! I am such a blessed mom to have her as my daughter and I am so grateful for her. She has a great support system around her from family to friends to complete strangers. She is a force to be reckoned with and I just pray that she will live a beautiful life with all the work I am doing now to set it all up for her to make it that much more incredible.


I pray that I help make it easier for those that come after me when your whole world gets turned upside down and you do not know where to turn to or where to start. I help where I can and when I can as I know how scary this can be. Scarlett has an incredible team and family to back her up and a super supportive mom and dad who work together for the greater of all the children by putting their differences aside and problem solving together as things come. I pray one day my daughter will be able to play outside and make friends without having to compromise her health.



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