Wordless Wednesday ~ At the Fair!

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

Not so Wordless Wednesday

I was going to post this picture for Wordless Wednesday, but since I had already made the picture into a poster with Heritage Makers, I thought I'll just show you that. Aren't my boys sweet! I love this picture, it's so peaceful. I found a quote about brothers from the Quote Gallery. It will be an 18x24 poster that I will frame as art for my home. I love Heritage Makers!

~

Please Pray

As I was reading a blog today that I've been following for about a year, I started feeling my heart ache as tears swelled in my eyes. I know only a small part of the pain that they feel and yet I can relate. It hurts so much to watch your little one go through so much pain. I was talking to someone the other day, telling them how much Joel's little head must have hurt after his surgery having almost a quarter of his brain removed, and I couldn't even think of it or I become sick to my stomach. I am so thankful that we have had so much time outside of hospitals and doctors. So thankful that he is doing better since the surgery, and so scared that it is all going to happen again. We have seen a few seizures lately. But that is not why I'm writing today. I'm writing to ask you to pray for Ashley and her family. They have to spend way too much time in hospitals and Ashley goes through way too much pain for such a little girl! Click here to visit her blog. Ashley's mama keeps it well updated, so you'll know how to pray. Ashley and Joel are almost the same age, and I just know that they would be instant friends if they ever met. We are praying for you, Ashley!

Happy New Year!

Hello to all! It has been too long. Sorry for that. One of my resolutions for 2009 is to be better about posting to this blog. My goal is at least once a week, more if life permits. For now I simply wanted to say Happy New Year from R family. We love you all. I am hoping to post a recap of our life in 2008 tomorrow (at least the time since my last real post). Until then...

Camping

We are attempting our first camping trip with Joel. We are leaving right now and will be back in a week-and-a-half. I will post all about camping life with a special needs child when we get back. Have a great week.

.....on the road again...I just can't wait to be on the road again...

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.

Joel's Surgery...and more pictures

I have been fielding some questions about Joel's surgery lately which has really got me to thinking about it. I realize that I have never really posted details and I have been thinking that I would like to help people who may be in the situation where the surgery may need to be considered. So, very soon I will be doing a several part post about his surgery. It really changed our lives! :)

Here are some more of my favorite photos from the last month:

My sister-in-law and I did some (TONS) of canning.
I am going to have to post about it 'cause I have tons of great pictures.

Jonny broke his ankle. What a pain...literally (and figuratively)!

My boys!

Joel likes Grampy's hat...or any straw hat for that matter.

Brothers, aren't they cute together!

I've got to run to Joel's OT (Occupational Therapy) now, but I still have more pics I want to share with you later...that's the problem with not posting for a month and being a person who LOVES taking pictures. Now sharing them all at once for you it seems like a lot, but really it's no more than I would have shown you if I had been posting regularly.

I'm back...

...and can't believe it's been a whole month since I've posted. I am so sorry. This past month has been very difficult in many ways and I just didn't have time to post due to added responsibilities. I am extremely exhausted right now, so I will leave you with some of my favorite photos from the past month and I will try to write an update in the next few days.











More to come...

Happy 5th Birthday, Jason!!!

I can't believe you're five today. You are growing up so fast and I love the young man you're becoming. You have such a sweet spirit and I love how you love to have fun. You're giggle makes everyone around you light up with huge smiles and joy. Your brothers love you and enjoy playing with you. I love how you guys are such good friends and how well you get along. My prayer for you is that you will continue to love the Lord with all your heart and that you will hunger to learn more about Him as you grow. God blessed me and Daddy so much when he gave you to us. I thank him every day for you. I am enjoying watching you become more adventurous, outgoing, and imaginative. I hope you had a great day today. I'm looking forward to your first train ride and the beach on Saturday.

Love, Mama
Note: We had a fun day today spending time as a family, then we had a special family dinner. Our tradition is the birthday boy (or girl) gets to choose their favorite food for their birthday dinner. Jason chose KFC and brownies. I would have preferred to cook something, but that's what he wanted. On Saturday we will finish his birthday celebration. We have another tradition we started with Jonny. Each child gets his first train ride on their fifth birthday then afterwards we take a picnic to the park or beach. Jason wanted the beach with sand and since Jonny currently has a cast on his ankle and can't go in the sand we modified our plans from going to a beach on Coronado to going to La Jolla Shores. La Jolla Shores is a great beach that has a grassy park-like area as well as sand and swimming. It's a wonderful beach for little guys because it's shallow for quite far out and it has nice sand (not too rocky). We are all super looking forward to Saturday. My mom and dad will spend the day with us. Happy birthday, Jason! We love you!