I met and started dating my husband when we were 16yrs old and have been married since 20, well I was 20 and robbing the cradle marrying my then 19yr old husband (who turned 20 a month later). When we got married I was newly pregnant with our son Jeffery. My pregnancy was fairly typical and I worked most of the way through it. While I was pregnant we had a triple marker test come back showing a positive Downs syndrome marker. We went to Eugene and met with a genetic specialist who reassured us that our son was going to be a healthy baby boy. On March 17, 2001 I gave birth to a 6lb 11oz baby boy, it was amazing. We were 20 yrs old and had little idea that having Jeffery would change our lives in so many ways! When Jeffery was just a couple months old we started noticing that things weren't right. I couldn't place my finger on what it was, and nobody else could either for that matter, but something was different with Jeffery than other babies. I will never forget sitting in aunt Mary's kitchen and her holding him in her arms, she noticed that something was up too..... is wasn't just me. Around then Jeffery started having seizure like activity and I called the Dr to get Jeffery in to be seen, Our normal pediatrician was out so we saw another dr, who told me that I didn't know what I was talking about and to come back when I was older. This Dr isn't practicing medicine anymore but I can't take credit for that. We saw his pediatrician and got a EEG scheduled to to see if Jeffery was in fact having seizures. So a couple weeks later my parents came down and took Jeffery and I to his appt, it was awful! It took forever to get the electrodes attached to his head but it was done, and he actually had a seizure while hooked up!!! Except the EEG tech didn't start recording the EEG and missed the seizure completely! I was devastated. I am 20 yrs old with my first baby and even the Dr's and techs can't seem to get things right. All the while we are trying to figure out what could be happening to our son. It was brought to our attention that old trailer homes (in which we lived in) could contain formaldehyde that could cause seizures, we the decision was made that Jeffery and I needed to stay at my mom and dads. My mom, who is a nurse, got ahold of the pediatric neurology dept at Doernbecher Childrens Hospital in Portland, OR and was informed by the nurse that was on call that if the situation was involving her grandchild she wouldn't wait for an appt and that she would bring in to the ER asap. So my mom, dad, Robert, Jeffery and I all loaded up and headed in to the hospital. He had many seizures while we were waiting and eventually had a CT scan. That day in August 2001 we learned that our precious baby boy had a condition called Tuberous Sclerosis Complex (TSC). See www.tsalliance.com for more information please!
Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. However, many people with TSC are living independent, healthy lives and enjoying challenging professions such as doctors, lawyers, educators and researchers. The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins. (taken from the tsalliace.org web site).
We were thrown into a world of unknown...... will our son be healthy? Will he be happy? Will he be mentally disabled? What in the world is going on in our lives?! Jeffery was place on the first seizure med with little sucess and over a couple years he was on well over a dozen different medications, all of them had little effect on his epilepsy. When Jeffery was 18 months old we received an educational diagnosis of autism. By this time we had our daughter Ahnalee who is 14 months younger than Jeffery. I became angry at God, I pleaded that Jeffery not have any of the skin manifestations that can occur with TS, guess what he got EVER single one of them! I remember a time when we were living in Lebanon when Jeffery and Ahnalee were little. I was beyond exhausted! I had a son who seized all night, was a HUGE handful during the day, an infant that 90% of the time slept through the night but was still an infant. I dealt with major depression, anxiety and became a walking sombie of myself. But, I put on a really good front and never let anyone know how much I hurt. Anyways. Robert was going to school in Salem for a fire science degree, so I was home with the two kiddos by myself. Jeffery had just had a seizure after being seizure free for two months, as I was trying to comfort him and help him through the seizure Ahnalee woke up and was screaming. I felt like joining her. I couldn't move, couldn't think and couldn't feel, my heart was broken, I was broken. I fell to my knees sobbing for God to forgive me of being angry at him, to renew my spirit and make me whole again. I attended church for the first time in many years shortly after that. I wish that I could say that my life turned around and everything was perfect after that, it it wasn't. I went to church and then straight home right after. I didn't feel that i had the ability to socialize, just being able to leave Jeffery in the nursery during service was hard enough. We saw many outbursts of anger. He never seemed to be able to slow his mind down enough for his body or verbal skills (what he had) to catch up. He would throw things, hit, pull hair. For many kids you see a little of this when they start testing their boundaries but with Jeffery it was more than that. I tried to go to church regularly but it was hard, really hard. This was in 2002 when you never really heard of autism. I would have to explain Jeffery to nursery staff (who were AMAZING) but it got tiring. I got into the habit if having my speal about Jeffery.... I could spew out all of his information in about 5 seconds. I ended up not going regularly at all I wanted to, I longed to and I so craved the undeniable love that God had for me, but it was hard. The story of my life..... but it was hard. I made a few great friends at church and actually they are some of my best friends, one in particular, Ms. Rachel Gray, pulled me in and wouldn't let my faith wonder again. We hung out at her house a bunch and let the kids play. Even with having Jeffery! He may have scared her many times, probably damaged her home and pulled her daughters hair, she still allowed me to come over. By the time Jeffery was in kindergarten it was obvious that jeffery was going to be a big kiddo. At the end of kinder we learned that the school he was placed at just wasn't going to be a fit. So he transferred schools. He was at this next school for about three years we tried many different behavior medications, saw a psychiatrist ,and therapists but not much helped with these outbursts that we kept seeing in him. Medications caused many issues that were awful, to learn that your child would sit in a classroom and sob for hours was heart breaking. But as much as it killed me I had to continue to send him to school,to be honest it was the only break that I ever had from him. By this time we were back at church but it was sporadic and dependent on Jeffery's mood. I started attending a bible study and was feeling a pull to be back in God's house again. Yes, you can be a christian and not go to church but you need to be able to worship and grow as a christian and I wasn't. Jeffery's obsessions began ruling my life, yes I was a stay at home mom but I spent hours finding silky pants for jeffery to carry, tap shoes for him to wear, buying toy dirt bikes and trying to rid my house of all the poop he would smear everywhere. Again I found myself tired. I had gainned so much weight while pregnant and stress just kept the weight on, I ate well, worked out, and was constantly on the go but the weight wouldn't budge. Just another thing that I stressed over.
Jeffery had transferred schools again, this time because he started an obsession over his teacher, saying highly inappropriate things that weren't true in the least. So he was placed in a classroom by himself and with an aide. 2:1. Again still on behavior medications and seizure medication. It hurt that as a mother I couldn't do ANYTHING to help my son not be so angry. Granted he wasn't aggressive or angry all the time, but when he was it was violent, destructive, self abusive and heart wrenching. Despite everything we discovered that we were going to be having baby #4. I was scared.... I was afraid that this baby could have TS as well, I was scared that I couldn't handle having four kids. In December 2010 I took Jeffery in for an MRI because he was complaining of seeing squiggly lines. Within 2 days of the MRI we were back in the neurosurgeons office discussing the brain surgery that Jeffery would be having in just a couple weeks, a SEGA (Subependymal giant cell astrocytoma) had developed between the ventriculs in his brain. It was blocking 90-95% of his spinal fluid. The drs were baffled as he didn't exibit any symptoms. By the time he had his surgery in January they were shocked to discover that the tumor had grown. He had his brain surgery and had to have an EVD (external ventricular drainage) coming out of the top of his head. How in the heck were we going to be able to keep him from pulling this tube out of his brain?! So not only did he have brain surgery he came out of it with his hands in restraints. He had surgery on a monday and we were at home that Thursday. It was amazing! I came out of this with hope, hope that maybe, just maybe this tumor was causing my sons aggression. It wasn't. Once again I found myself heart broken, frustrated and hurt. I have lost many "friends" because they couldn't handle Jeffery. I couldn't take him anywhere without the fear of him breaking something.......or someone. Last November (2013) two days before thanksgiving my world started imploding. I had to frantically call my mother in law to come get my girls. Robert was at work 15 miles away, Jeffery had exploded. It wasn't safe for my girls to be at home with him. I was afraid to be alone with him. What kind of mother was I? I couldn't keep my kids safe... shoot I couldn't even keep my son safe from himself. I went to Jeffery's psych almost twice a week begging for something to help my son. The amount of medication that was thrown at Jeffery would have knocked out a horse, let alone a 12 yr old boy. NOTHING worked. My family was going to be broken up, I would either have to place my son in a group home or have my girls live with family. Neither was an option that as a mother I ever thought that i would have to make. A friend came to me and asked if we had tried cannabis oil. Me?! I always say that i'm one of the few people that I know of that has never used cannabis! I never went to a party where it was smoked, I wanted nothing to do with it. But it was something that I haven't tried...... as a mom I had to know that I tried EVERYTHING in my power to keep my son at home and my family together. That evening I gave my son cannabis oil fr the first time in a tincture within 20min my world changed! He was a completely different kid. The cannabis seemed to slow down his thought process so he could think more clearly, he was calm, happy and safe! I havent cried the whole time writting this until now. That's how much that this changed my life. My son has two birth stories, the first is when he was born into this world and the second was when he was born into a world of hope. I'm writting this blog in the hopes to help other families that are as desperate as we were.... this was a crazy, short unedited version of what has happened but more will be added. Cannabis made it so that my family can stay together and intact. Cannabis made my son be able to go from an IEP goal of learning 15 sight words to learning 75 in one year. Cannabis changed my life. I am now on a mission to learn everything that I can about cannabis, how to grow, process, administer, different strains.... oh my. As of now I am just learning all these steps but want to help kiddos and moms like myself. There is no guideline out there on how to treat and use cannabis in a child..... I want to change that.
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