Joel and I took a road trip to Mississippi while we were waiting to close on our house. {Jer couldn't go because he started a new job and didn't have vacation days.} We drove to Nashville and stayed over night and then drove straight to the Coast the next day. I was nervous about driving alone but thankfully we didn't hit any major traffic and Joel behaved well.

When we got close to Mississippi I rolled down the windows and almost started to cry over the smell of the air. It smelled sweet like honeysuckles. I never realized that before.

. . .

A few highlights from our trip:

Playing at the beach with Grammie (my mom)

Seeing my BFF 

Going to the New Orleans Zoo with my mom, my brother + his family

Joel's first time on a boat; spending a day on Horn Island with Pawpaw (my dad) & Granny (my stepmom)

Seeing Joel play with his cousins and interact with his grandparents made my heart full. I can't put into words how hard it was to leave this time.. God obviously knew my heart was torn because during our visit I met a lovely lady named Jeanne that quoted part of a Bible verse [each time I saw her] that I needed to hear.

"..Where you go I will go, and where you stay I will stay. Your people will be my people and your God my God." Ruth 1:16

I have always been good about not crying when we leave the Coast after a visit, but this time I cried lots of tears. I always thought we would settle there.. raise our baby there.. but God has a different plan for our family at the moment. Deep down I know His plans are the best for us, but there are moments when I just don't understand. Thankfully I can drive home whenever I want now though, instead of having to save up tons of money for plane tickets.

Home Sweet Home

We became homeowners on June 03, 2013! We still can't believe it's true! We thought we would never be able to settle down and actually own a home. (One of the many reasons why my husband decided to leave the military after almost 9 years in.) God has blessed us big time, and we are VERY thankful!

We still have a few things to do/touch-up in the inside before I post pictures. There are 3 bedrooms, 2 1/2 baths, a basement, and a 2 car garage. Our favorite part of the house is the backyard deck:

Joel loves to play outside but we haven't let him in the backyard yet because we need to build a fence first. There is a pond in the back and our yard is covered in goose poop.. Those two things don't mix well with a toddler! Well actually, I'm sure he would have a blast.. but me. not so much. Haha

If you are stopping by for the first time and need to catch up, visit my previous blog - A Bee and His Honey

Team Joel 2013

Last year we participated in Seattle's Step Forward to Cure TSC walkathon. It was our first time walking as Team Joel. Thanks to family and friends we were able to raise $1,235! We never imagined we would be able to raise that much in donations. We were blown away by the support!

This year we will be participating in Ohio's Step Forward walkathon. We have been trying to fundraise for a few months in between moving across the country. It has been stressful at times, but it's so worth it to help this great cause. 

Last year I got word that people were saying they would not donate because it wouldn't help Joel directly. I don't know where they got that information, but it's false. Every dollar raised for TSC research helps Joel directly! The research is not only to hopefully find a cure for tuberous sclerosis complex but to also find better treatments for those suffering with this horrible disease. The scary reality of TSC is that it can change at any moment. I cannot stress how important this research is!! If it wasn't important I wouldn't be begging everyone and their mama to support us. I would have stayed home back in February instead of leaving my baby for the first time ever just so I could speak to legislative health aides on Capitol Hill.

When I went on my DC trip I learned so much about TSC research. For instances, I learned that the TSC research is also helping to unlock doors for autism, epilepsy, cancer, and even traumatic brain injuries. Amazing right? 


One thing is for sure, I will not stop begging people to donate (even a $1.00!!) to support this research until a cure is found. I'm praying the cure will be found within our lifetime! If we don't advocate, who will?


You (yes, you reading this!) can help us raise awareness about tuberous sclerosis by sharing our story with everyone you know! You can also help by sharing our team page so people can sponsor Team Joel. Every bit of support is greatly appreciated! :-)

 

TS Specialist, Medicine Changes, & Seizures

Joel had an EEG the first week we were in Ohio. He cried while the electrodes were placed on his head (as he usually does),.. but thankfully Jeremy and I were both able to be in the room (SCH would only let one of us be with him during EEGs) and I was able to lay beside him. He calmed down once the techs were done touching his head. At the end he was excited and kept saying "done.. mama, dada.. done.." and would also do the sign for "all done."

{Seeing him like this breaks my heart. I thought it would get easier as he gets older, but it hasn't. I worry about how I will explain all this to him when he is older and starts to question why he needs these tests. I pray God will give me wisdom on how to explain it when that time comes.}


We met with a neurologist after the EEG. The neurologist is a tuberous sclerosis specialist. It was amazing to talk to someone that actually understands TS and was able to answer all of our questions. The neurologist in Seattle was nice, but it was obvious she didn't know much about TS.. We would leave appointments feeling more confused than we did when we went in! It was frustrating. Anyway, the TS specialist said he couldn't believe Joel has only been on one seizure medicine because most TS children have to try multiple meds before finding one that will work. He also said he couldn't believe the notes and the test results from Seattle because Joel's EEG from that day looked great. He said the first EEG Joel had (without meds at 7 months old) showed abnormal activity all over his brain.. and the current EEG showed a tiny bit of abnormal in the front left (where most of his tubers are) but it was so small that you would miss it if you weren't looking hard enough. All I could think was GOD IS SO GOOD!

One thing we have been concerned about for a while though is Joel's appetite. His seizure medicine has a long list of side effects and appetite loss is one of them. Seattle doctors usually brushed it off, telling us it was probably just a toddler phase and not to worry because he was still gaining weight. But I knew in my heart that wasn't true. So before sending us home the doctor sent us to the lab for Joel to get blood drawn to check his medicine levels. (Seattle doctors never checked his levels!) His levels were a high normal so the doctor decided to lower the meds to 2 pills {we open the pills and sprinkle the powder into food~in case you are wondering how we give a two y/o pills} in the morning and 3 at night. We noticed right away he was eating more! But.. we also noticed the seizures again. He would randomly stare off and no matter how loud we said his name or clapped our hands in his face he wouldn't respond. Within a week they were coming more often so I called the neurologist and he said to increase the meds back to 3 and 3. The seizures went away and so did his appetite once again. =\ I'm worried his medicine will need to be changed to help with his appetite. Why does that make me worry you ask.. Well because what if the next medicine doesn't work as fast or as well as the current. I don't like to think about it. At all.

In the end, I still believe God is good--and I know He will give us and doctors wisdom on how to keep our sweet boy healthy!

For TSC Awareness Month

Today I'm guest blogging at Mixed Up Mommy for TSC awareness. Click here to read my post!

What I'm Learning: Forgiveness

I struggled for a long time with forgiveness. I'm not talking just a few days or even months.. it's been a struggle for years. I know I haven't shared much about my past on here (mostly because I don't know where to start) but there were certain people from my past that I just could not and would not ever forgive. I mean, hello.. why should I when they were the ones that hurt me? Right??

Wrong!

The moment it all changed for me was when I read a verse that said we are to forgive just like the Lord forgave us. That verse hit me like a ton of bricks!

If you only knew all the things I have done wrong and all the times I have turned my back on the Lord.. and yet, He forgives me! He is ALWAYS there, ready to love me even though I have broken His heart a million times.


I started praying that God would bless the people I had bitterness in my heart towards. It wasn't easy at first. At all. But over time I have felt my heavy, bitter heart becoming lighter and less hurt. When something reminded me of them I would think of happy memories instead of the ones that caused anger and resentment in my heart. Instead of cursing those people, I have found myself praying blessings for them and their loved ones.

I have also been praying for anyone that I may have bitterness in their heart towards me.. I hope they can forgive me for hurting them. Sometimes it's easy to forget we can hurt others.