“I met the man that would be my husband at 19 and, for me, it was love at first sight. Not kidding. I broke up with my boyfriend that day. I told him (my husband) it was meant to be and when he was ready, I would be here waiting. One night we were hanging out and I mentioned to him, again, that I was waiting, and he said, ‘Waiting for what, exactly?’ I said, ‘To start our lives together. We’re going to get married and have a daughter. I see it clear as day.’ Which was odd, because up until then, I never thought about children, but I was certain one way or another he and I were going to have a family. The smart man he is, he realized I was right, and we started our life together.
Not long after, I found out I was pregnant. Although I said we were going to have a child, I never thought it was going to be ME who had the child, especially so soon after we started dating. I have been told over and over by many doctors my endometriosis was the worst they had ever seen and children were not an option. The excitement of a baby was quickly dimmed when my body tried to reject the baby. Each time I would stand up I would start to bleed. We went to the emergency room, and I was told by the doctor I was no longer pregnant with a viable fetus and I would need to have a D&C that day.
I felt this was a very personal choice and I wanted to speak to my actual doctor that day. It just so happened he had privileges at that hospital, so I waited. After a few hours, my doctor was still tied up with other patients and the ER doctor was ready to move things along. I reluctantly agreed. Moments later, my actual doctor showed up and said he agreed with the initial assessment by the ER doctor and he would do the procedure himself, but he wanted to double check my labs first. He said the anesthesiologist would be in soon. As they were about to put me under, my doctor rushed in screaming that the ER doctor read my reports wrong. I was pregnant and we were about to abort a viable child. What a miracle.
The rest of my pregnancy was spent just trying to keep my body from going into preterm labor. I wasn’t worried. I knew she was going to be born on November 3rd and I told everyone she was going to come out that day and everyone laughed at me because, ‘Babies come when they want to.’ I was right. On November 3, 2005, I gave birth to my beautiful 7lbs. 1oz baby girl, Scarlett. It was a hard delivery for my daughter and I both, my doctor called it ‘precipitous birth.’ This type of birth comes with risk of harm for both mother and child and that’s exactly what happened. Scarlett never had time to be positioned in the birthing canal and her little hand was positioned next to her skull which caused a Sub-arachnoid Hemorrhage. I tore very badly and because of this they only brought Scarlett in for feedings as I needed to rest if I was going to be discharged with a newborn in a few days.
The following day we were told our sweet newborn baby girl was having nearly constant tonic-clonic seizures. She was rushed to Texas Children’s Hospital in the Texas Medical Center. Our day-old daughter had a spinal tap, countless MRIs and CAT scans and they were dosing her with Phenobarbital to stop the seizures. We had no idea what damage this was causing our daughter. The joy of being first time parents was marred by these seizures. My husband and I were devastated for our daughter. Weeks went by and she was stable enough to go home. We were given no answers other than, ‘Sometimes babies have seizures’ and ‘It was probably the Sub-arachnoid Hemorrhage.’ We were also told, ‘Just look for any seizures or delays and let us know.’ Looking back, we were so naïve, but in our defense I have come to learn this is standard practice when seizures are involved.
Scarlett was a happy and loving baby and she loved music. I used to marvel at how she would self-soothe by humming to herself. She loved to be outside and would crawl around and get into everything. However, at 18 months she still wasn’t walking or trying to talk and I raised this concern multiple times with her doctors. We got her all the therapists: speech, occupational, and physical. Scarlett was walking at 23 months and some words started to come out. What a relief, she was able to catch up.
When Scarlett was in kindergarten, her teacher called my husband and I in for a special meeting. Apparently, Scarlett was charming other students into doing her work for her and her teacher felt maybe Scarlett was delayed. When the state was done testing my daughter, it was apparent she had a severe developmental delay and it was recommended she be placed in the Life Skills Program. This is a program that goes beyond special education.
By the time Scarlett made it to sixth grade, her behavior at school up until then could only be described as ‘feral.’ But by God’s grace we got the first ‘good’ teacher that really connected with her. We were meeting a side of our daughter we had never met before. On the Fourth of July in 2019, I had just made us dinner and we were going to watch fireworks on TV when Scarlett asked for a dessert. As I was making the dessert, I could hear her coughing. I asked her if she was okay and there was no response. I started towards the couch and was saying, Scarlett you need to answer Mommy when she asks…’ that’s when I found my child lifeless on the couch. The ER doctor said it was likely dehydration.
Two weeks to the day she had another seizure and hit her head. We spent 3 days in the hospital and had no answers. The seizures started coming like clockwork, every two weeks. Scarlett’s seizures are devastating. They do not stop without medical intervention, and they almost instantly deprive her of oxygen. If we do not give her rescue medication in time, she will suffer brain damage at the least and death at the worst.
Scarlett’s 14th birthday came around and I invited all the people who had attended in the past, but this time was different; I hardly had any people respond and those who did declined to come. I didn’t think too much of it because at the time I had no reason to, but I did think it was rude of some to not respond at all. So, I quickly changed plans and took Scarlett to the Renaissance Festival instead of a party – she wasn’t happy about not having a party, but I told her she could shop until her heart was content at the festival. This seemed to make up for it.
On December 23, 2019, after a very hard 23-day stay in the hospital, we FINALLY had some solid answers. Scarlett has Left Temporal Lobe Epilepsy with Focal onset seizures that start in her eyes and then the seizure rapidly generalizes within 3 seconds into a full tonic-clonic seizure with oxygen deprivation. We were to get a loading dose of a new medication, new rescue medications, and we could be home in time for Christmas. When we got home, Scarlett was so excited, but we laid low for a while to see how the medication worked for her. After the new year, I reached out to friends to see about getting together so the girls could hang out since Scarlett was in isolation so long, she really wanted interaction. No response.
One day, I reached out to friend and simply asked why she had cut off communication. This time I got a response: She told me she didn’t know how to be my friend now that my daughter was sick, and it was better off we stopped talking as she didn’t want her daughter to be around mine and witness a seizure. During all this time, I had earned a free trip to Disney World at work. The weekend we went was the weekend it closed for the pandemic. The world changed overnight. This was the last time Scarlett would be anywhere public for almost ten months. We had no idea how lonely the next few months would be. Online school was nearly impossible for my daughter. We managed to help her the best we could, but she wore her loneliness on her sleeve, and it broke our hearts.
When her 15th birthday came around, I was able to say the Pandemic was the reason why we couldn’t have a party and I offered to buy her whatever she wanted. She asked for a purple bike. We fell into a good routine after. That is until Scarlett started to plan her 16th birthday and she wanted to invite all the people who had told me they didn’t want to be exposed to seizures.
I tried to convince Scarlett with the rise of the pandemic in our area we should consider other options, but she had her heart set on a party. I felt like a failure of a parent. I knew what was going to happen: I was going to plan this party for her, and no one was going to show up. Out of frustration and needing to vent, I took to my blog and wrote about how I felt. As always, I shared the blog to Facebook, and I was immediately messaged by many people who not only wanted to attend but wanted to help plan. I was shocked.
I tried to explain my blog wasn’t about asking for donations or handouts, it was just a special needs mom airing her pain. I needed that release. I didn’t want to put anyone out because at the end of the day, based on the last time I tried to plan something, no one was going to show up no matter who planned it. One friend, Angela, wasn’t going to hear any excuses. She told me, ‘I’m planning your daughter a Sweet 16 and you don’t have to lift a finger, just give me a date and promise you will show up.’ I was at a loss for words – and I’m a writer! I mean, I just met Angela earlier this year and here she was doing something for us that was so unbelievably kind and generous. I still can’t believe it.
I decided to keep it a secret from Scarlett, and I think part of it was because I haven’t ever received a gesture of kindness like this and I almost didn’t trust it. Another part of me wanted Scarlett to really experience the magic of what Angela was creating. I was resigned to not having ‘good friends’ and only networking connections from work.
My daughter and Angela both share a love for Disney and Halloween, so we decided it would be a Halloween-themed party with pumpkin decorating and lots of Disney music. I told Scarlett Angela had ordered a Keto cake from us (we use Keto to help control Scarlett’s seizures) and we had to drop it off. Afterwards we were going to do her Sweet 16 photos, so she needed to dress up for it. Ironically, the dress I had bought prior to all of this was very similar to something Cinderella would wear, which was in alignment with Scarlett’s first birthday, which was another Halloween party and a Cinderella cake. This felt right.
Walking into Angela’s house was like stepping into a beautiful Halloween-themed dream. She had really pulled out all the stops for Scarlett. Of course, Scarlett was confused about how all the people she knew were also at Angela’s house and that’s when I told her this was her Sweet 16 and Angela had planned a magical day. Something else that was truly wonderful was the new faces at the party; people we didn’t even know attended and brought gifts. It was so magical and the look on Scarlett’s face is a look I will never forget. This was Cinderella getting to go to the ball and Angela was her Fairy Godmother – she gave my daughter something I couldn’t.
I know this was Scarlett’s party, but I feel like I was the one who received a gift. Again, my friend was able to do something for me I couldn’t. I had trauma regarding loneliness and lack of a tribe. I had been fighting for my daughter’s health and I was abandoned by life-long friends. In this experience, I realized I had put up walls because it is true, fierce independence is a trauma response. I was guarding my daughter and myself from disappointment because I had lost faith in others. The gift I received that day was immeasurable. I cannot be grateful enough and I cannot put into words how deeply loved we felt.
I just wish others could know and understand if you know someone who has a medically fragile child, abandoning them because you don’t know what to say is plain wrong. Special needs moms know their lives are hard and we don’t want you to fix our problems – heck, most doctors can’t fix our problems. We just want you to be the friend we are back to you. Yes, sick kids are a sad topic, but if you don’t know or don’t understand just ask us. We welcome the opportunity to talk about out children and their disease to bring awareness to the cause, so that way we can live in a world that sees our children for who they are and not for their disease.”
