20 some odd months ago Brock was born. After a few hours they gave him to me. and I sat and looked at him. I honestly couldn't believe he was mine. This kid seems too special to be mine. I can tell you I checked our wrist bands in the first few hours a few times to make sure. He seemed so alert and like he could read my mind. I was terrified. He was too beautiful, he has to special for me. I felt like I couldn't be his mother. So many people commented on his spirit and how wonderful he was. He just looked at people and had this magical trance on them. I really felt like he could read minds. It was like he knew people he would connect to random strangers, countless times I was told he made there day so much better. And he was given to me, and I had no idea what to do with him. I knew how to do certain motherly things, but there's something about him. I remember crying and calling the doctor because he never slept. I couldn't keep up with him. I felt like a horrible mom, after about 6 months I had finally felt like I had a schedule and was doing better. And then after we came home from our Christmas trip it all fell to pieces. He would scream for hours and couldn't be soothed. He ended up crying himself to sleep because we couldn't figure out a way to calm him down. It was a hard time for everyone. After months of struggling to get him to sleep for a few hours at a time, we came to this day one year ago. He was 8 1/2 months old, I learned how long 3 minutes felt like. The boy I didn't think I deserved was turning purple, shaking, and lifeless. I prayed not to take him away from me, that I would try harder! I learned what I do when I am panicking. And after that 3 minutes I became more afraid then I ever have in my entire life. My little boy couldn't respond to me. He was a shell, it was like his spirit was gone (the one everyone talked about) it was gone. That right there was far scarier then anything that I have ever experienced. The day was a rough one. I had had so much adrenaline and he came back and he was fine. But I wanted answers I felt like I had lost my baby. I felt like he was gone even though it was only for 15 minutes, I wanted to know why. We where told wait. I remember it was st Patrick's day and I had a key lime pie in the freezer to celebrate, but it stayed in the freezer for months. I remember people kept telling me how amazing of a mom I was but how I didn't feel amazing, I didn't want to be amazing. And I didn't know what to think or do. I just felt like I was treading water.
He kept having seizures and was hospitalized for testing. Later being diagnosed with epilepsy, When I think back to it, I know I shut down.
And then I found out I was pregnant again. From the moment I found out (which was 13 weeks along) he was a special thought. I knew he was a piece maker, a calmer downer, from the beginning. I knew Brock did better around other people. That he needed a challenge. Heavenly Father comforted me that this baby was for Brock, that they needed each other. After a few months and 9 more seizures. I watched him progress and digress having seizures. Brock was maxed out on one medication and started another. He was so full of meds that he struggled so bad. He cried and was sad and just wanted to be held and sleep. I felt like I had lost that boy again. He wasn't his happy self. He didn't have any more seizures after the 2nd medication, but it was still hard. Now he was a slug slowly moving like half his brain half working.We never left him alone and we tried to find things to entertain him for just a little while and make him happy. I prayed and knew it was right for him to be in the medication. He got better, especially after we weaned Him off One medication. There are still some things we struggle with, with the medication like in the morning it makes him tired and cranky for a little while but not long, in the evening if we put off giving it to him like if we are out later, he really has a hard time. And some side effects are weight loss and kidney stones. We still will have EEG and some ultrasounds (to make sure there are no kidney stones)
Now a year to the date of his first seizure, 9 months since he has had a seizure. From still learning to crawl to running, jumping, sliding, swinging little boy. He can count to 3 and knows a few colors. He sings pop corn popping and old mc Donald. He knows how to pray, knows who Jesus is and how to lead music. He isn't a morning person and he likes either his dad or his mom when he wakes up not both. He likes to cuddle for the first 15 minutes after waking up and then wants his brother. He thinks drinks are "more" and is always thirsty. He lets me know he loves me, and he gives kisses and hugs. He loves it with we give him a "Hug sandwich". He knows some shapes like stars and circles. We have completely lost count of his vocabulary, its so big. He loves to go to the park and color. He cannot stand it if I am cooking and he isn't watching and helping. He loves babies and takes care of them. He loves kids and loves to laugh. He adores his brother more then anything. He loves animals of all kinds, but is very careful around them. He is a happy boy, full of love and a very sweet spirit. (still doesn't sleep so well ;)) How grateful we are that we still have a sweet boy. That even though he has epilepsy it something he can still grow and learn and hopefully grow out of. We are grateful, that we can look back and think about how hard it was, but how many people love us, and how comforted we felt. And how grateful we are for them. My testimony in the Holy Ghost and prayer has grown so much. My trials are my trials and I am grateful for them. They help me learn and grow and be a better person. They will help me get back to Heavenly Father again. And be together with all of my boys forever. What a great blessing that is.
We have 15 more months of medication and if he doesn't have a seizure we can wean him off the medication. When he is off his medication there is a 6 month wait. If he doesn't have a seizure during that time he can be considered seizure free and the diagnose of Epilepsy turns to Childhood epilepsy.
Ironically enough March 26th is Epilepsy Awareness day. If anyone would like to join us next Wednesday, by wearing purple and supporting epilepsy awareness. And If you do, please send me a picture so I can show Brock!