Gray and dreary...

...describes my soul as well as the weather. (The weather isn't helping.) I am exhausted, the last several months have finally caught up with me. Isaac is still out of work and we've all been sick a lot. Joel has been difficult. I have been HOPING that what I have been seeing is not seizures...but when Joel's therapists started noticing, I knew that it's not just my imagination. Both therapists have seen possible seizures, the first time I didn't see it and his OT told me about it, but yesterday I saw it along with Joel's speech therapist. The three of us were sitting at a table playing and all of a sudden he looked in my direction but his eyes didn't focus. He started saying "papa, papa" in a whimpering voice (which could be him asking for his grandpa or pacifier - he calls it "baba" which sounds a lot like papa.) His little face looked so scared, terrified, and his eyes were twitching a little bit and just not focusing. It seemed as if he was looking for me but couldn't see me. He was shaking a little and looked really weak. I knew something was wrong and couldn't help but gather him into my arms. In retrospect, I think the asking for "papa" was because he was scared. He feels safe with "papa", whether it's grandpa or pacifier.

I have seen several instances similar to this one each month since about January. I have been hoping beyond hope that it was just a one time thing each time because the thought of traveling the road of seizures again rips my heart from my chest and tears it into tiny pieces. The thoughts of more anti-seizure meds (which make his brain fuzzy, can make him dizzy, and we've been told they have only a 2-3% chance of working since they didn't work last time), multiple tests (which he is now terrified of due to the pain he experienced during his surgery), frequent doctor visits (which he hates and screams the whole time), and ultimately the very real possibility of needing brain surgery again takes away my breath...like someone punched me in the stomach. I feel like I am in a daze. It is striking me once again that I have a "special needs" child and that will never change. Tuberous Sclerosis is something Joel will live with the REST of his life. He will have good years (hopefully) and bad years...good months and bad months. We have been very blessed to have a good year-and-a-half. I realize that and am VERY thankful for it. But I don't know where I am going to get the energy to fight for him again. He is older now, stronger, and much more aware which only makes things more difficult...emotionally and physically. The feelings I felt today could only be understood by a parent of a special needs child. It is impossible to understand unless you've been there. I know I tried to understand before I had Joel and now I know that it is impossible due to the experience I've had. I really appreciate those of you who try to understand, though...and will do my best to communicate my feelings throughout the blog. Today I have been struggling to let go of my hopes that Joel's seizures would never come back, I have always known it was a possibility, but have had to hold onto the hope to survive. I now have to adjust to a new reality. Joel was already scheduled for his bi-annual check-up with his neurologist on Monday. Can we say "God's timing!" Please pray for everyone involved. My heart hurts for my little guy.

Good night, sleep tight and I will keep you updated. Thank you for being here, my friends.

Above: Joel with his Occupational Therapist (OT) ~ Below: Joel with his Speech Therapist

VBS on Outrigger Island

Outrigger Island is this year's Vacation Bible School's theme. It's fun!By the way...in the background you can see the trailer where my parents have lived since the fire (in our church's parking lot).

Sorry I can't post this week. I have been super busy and EXHAUSTED. I am leading music for our Church's Vacation Bible School. And it has proven to be exhausting. Add to that Jason (and I think now Joel) are sick with colds that are going around VBS. Then there is the fact that I think Joel is having seizures again (so I am having to make extra calls to doctors) and Joel has been difficult this week. Then there is the fact that this is Isaac's fourth week working 5 hours away from home. And I am not getting enough sleep because of all my responsibilities...soooo you can see how I am so exhausted and don't have time to post until probably Saturday. We could use some prayer in this family. Thank you to all of you who visit this blog and follow our story and thank you to all of you who pray for us. You are a huge encouragement to me.

More Tests

My day went nothing like I expected. It started with a call this morning from Joel's therapy office saying that his therapist is sick, so his therapy was canceled. You see, God knew how my day was going to go before I knew. At the time I thought nothing of his therapy being canceled. I just thought "great, that makes my day easier". So, right after the call I woke up Joel and took him fasting to get his blood work. The blood draw went as good as can be expected. He's such a good little boy. Only cried a little. :( My sweetheart. They took the maximum amount of blood allowed for his weight and may still need us to come back in a couple days to give more. I guess there were a lot of tests ordered. There was a huge wait when we went to the lab so I ended up missing my appointment for my Echo (heart ultrasound). I went as soon as we were done and explained what had happened and she rescheduled me for 12:30. That was exactly the time I would have been leaving to take Joel to therapy. So see, God knew and he had already arranged for me to be available. My Echo went well. She said she didn't see any tumors (which TSC can cause if I carry it). Also, my heartbeat was fast again. The tech didn't say any more than that. Just that the doctor will give me the results in about a week. I got a call this afternoon from Joel's pediatrician saying that they had the results from the urine culture and it was negative. I guess that just means that he doesn't have an infection. So that's good but to me that just points to his kidneys as the problem even more. I am awaiting the results of his blood work anxiously. Isaac got home today and took us out to dinner to "give me a break". :) Isn't that sweet? It's so wonderful to have him back home with us where he belongs. The kids lit up when they saw him. They love him so much and need their daddy to be around. It looks like he may be going back to work in El Centro again next week which means he will be staying away from home again. It is about a three hour drive one way from our home. The company he works for has picked up a long term job there and he is waiting to get a call saying if he was chosen to go or not. Don't know what I will do if he has to go long term. :( At least I get to see him on the weekends. I know there are many military families who are separated for months on end and I really respect them for the price they have paid to serve and protect our country. Thank you to all our military. I am going to bed now and I don't have to sleep alone tonight! :) Thank you, Lord. Goodnight.

My new business (or do I mean busyness?)

Joel has a cold so that is why I haven't had time to post lately. On top of that I have started a new business this past week - www.save-your-stories.com. I am an independent consultant for Heritage Makers. It is a wonderful company and their goal is to strengthen families so it is something I am proud to be doing while really enjoying it. This week has been mostly set up. I will be posting more about my exciting new part-time career when I have more time. The reason for adding this job to my already insane schedule/life is that with Isaac out of work so much this year and all of Joel's medical expenses the past two years we have gotten ourselves into debt. Isaac wanted to get a part-time job to start paying it off and I didn't want him gone more than he already is. Most of my new work can be done from home, so the kids don't lose any time with either of us. Please pray that this goes well for me. Adding a new part-time job to my very busy schedule basically means I don't have time for anything but necessities like kids, church, school, doctors, therapists, business, dishes, cleaning, and laundry (which I am getting really behind on.) Did I mention that Isaac started his new job last Monday? We are so pleased to have him working again. He is on a demolition crew and has been working a jack-hammer and moving cement chunks all week. Add to this he has a daily drive of 3 hours. Poor guy has been coming home in the evenings with no energy left. Since Isaac isn't home much anymore and has no energy when he is home, I have taken on a lot more around the house. I am praying God will provide me the strength to continue doing everything to His glory. I will try to be better about blogging more, the day just needs to be longer than 24 hours.