When life hands you lemons make lemonade.

This Tuesday I am grateful for my life as a special-needs mom. I never thought in my whole life that I would ever have a special needs child. It's a silly thing to think... I truthfully thought that I was not cut out for the job. When I looked at special-needs moms I thought to myself...they are true hero's. I remember thinking in the past that God would never pick me. There is a certain type of woman out there to be a special-needs mom and I am not one of them. I denied the calling to be a special-needs mom for almost 2 years. I knew how to be a mom to my other three kids I did not know how to be a mom to Leah. Here I am now with Leah. I, of course love her with all my heart but I didn't know how to take care of her. I was scared out of my mind! Again I denied it over and over. I didn't want to do it! I thought to myself...I am not strong like those other women. I did not want to do hard things! I have no one to guide me on how to care for her. I didn't have my mom to guide me...no doctor...no friend...no book...nothing. I begged God every single day to not make me do this. I begged him to please bring Leah back every single! I also begged him every single day to not make her go through this and to not have her experience this kind of life.

Two years later.. here I am. Stronger than ever. I love my life. I thank my Heavenly Father every single day for bringing Leah into my life and making me a special-needs mom. I wouldn't trade this life for anything! She is truly a blessing in my life and my families life. God knew I can do it. God hand-picked me. God hand picked my children to experience this. God has never left me in the dark. He takes my hand every single day and guides me. He knew I could do this! He knew I was strong enough to do this! I thank him every day for trusting me to care for his daughter. I am so grateful that I have finally reached this beautiful point in my life.

Life handed me lemons and I finally made lemonade!!!

A great day up at the Capitol!

Yesterday we spent the afternoon up at the Capitol. The HB105 (bill for CBD oil) finally got out of the Rules Committee and into the Law Enforcement Committee. Chad was asked to speak at the Committee hearing.  Time was running short so only two people spoke, Jennifer and Annette. The other two speakers were an individual from the Control Substance board and the other from the Utah Medical Association. They were opposing the bill. The story gets interesting at this point. The woman from UMA opposing the bill is one of my clients. A very good client and friend...a client I have had for many many years. She knows everything about my life with Leah. She knows everything I have been through and all my heartaches. It was very difficult for me to have her there opposing our bill. I know she was just doing her job but it hurt. She was the last speaker. I was very emotional and said a little prayer in my heart that she would not take this away from us. She is a very good speaker, she travels around speaking to huge groups of people. I don't know if it was five news camera's on her or what but she was shaking to death. I literally was not expecting what just happened. She didn't make sense, she read her testimony fast with no rim or reason, she couldn't pronounce the words like cannabanoids. She called it CSD instead of CBD. A lot of her information was not correct. It really was not good and was not like her to mess up so bad. But, I was so happy...I felt like my prayer was answered.  Basically she said there's not enough clinical trials and research to go ahead and legalize hemp. First of all, our kids don't have time for clinical trials. It takes 4-10 years for clinical trials and hemp oil is already legal, we just want to bring it in from Colorado. Anyway, After her testimony Rep. Layton spoke. It was awesome. She said (I got this from the Salt Lake Tribune):
 Rep. Dana Layton, R-Orem, said safety isn't the main concern with the legislation because the children already aren't safe.

"Long term is not in the cards for a lot of these kids, and to deny them a short-term possible solution or treatment because of some philosophical objection about what could happen in the long term when these kids' life expectancies are not long to start with, I think, would be wrong," Layton said.

That was just a small piece of what she said. I wanted to jump up and clap and give her a big hug. She got it spot on! After Rep. Oda who supports us made a comment and then he asked that the bill go to the House floor. He said all in favor say "I". All said "I" except two, one is a doctor and he asked that we change the bill for only treating Epilepsy not all neurological conditions. I think we have him once the bill is reworded. When the Rep. pounded the gavel. All us parents jumped up and hugged each other and just cried. It was such an incredible moment. One I will never forget! Now on to the next step...the House!!!
All news stations and news papers were there. Many families got interviewed. The Salt Lake Tribune had the best article: http://www.sltrib.com/sltrib/home3/57575988-200/cannabis-bill-oil-utah.html.csp

I talked to my client afterwards and she really felt bad. I told her I have no ill feelings towards her. I also told her I loved her and valued our friendship. She said the same.

This statement was just released from the national Epilepsy Foundation:

LOVE IT!!!!

Leah girl- We will never give up!!! 

Thankful Tuesday.

I truly believe in having gratitude everyday. It's what gets me through my days...especially the hard ones. Leah has an eye infection and she hasn't stop seizing for two days now. I start to get panicked on the second day, hoping she will pull out of it soon. Maybe these new medications are causing more seizures. Dr. Swoboda said that could happen. Who knows? It could be her eye infection too. I try not to over analyze or I would go crazy!

Last night she was seizing over and over. Her extra doses of seizure medication's were not stopping them. She had a moment of just shaking to death. I couldn't get her to stop. She shakes with seizures but this time was really bad. Chad was out of town and I got really scared. I wrapped her up tight and just rocked her. I said a little prayer and began to list off in my head all the things I am thankful for. I immediately stopped crying and all the anxiety started going away. Leah soon began to slow down with her shaking.

Lately, when I am struggling I start to think about everything I am thankful for. When I do this my fears and doubts literally melt away. It truly works!

Every Tuesday I want to write about gratitude!

A new path of answers.

On Friday morning Chad and I took Leah to see Dr. Swoboda. We were informed that Leah's spinal tap showed that she has a dopamine deficiency. The doctor doesn't know the root cause so they took more blood and sent it off to a Children's Seattle hospital. In the meantime she is treating Leah with dopamine metabolites. Because Leah has had severe reactions to medications in the past Dr. Swoboda wanted Leah to stay up at the clinic for the day and make sure she does well while she started her on a couple medications. Leah didn't have any adverse affect on the new medications so we went home. She is on a very low dose right now. Dr. Swaboda wants to keep in close contact and slowly up the medications. She said it will take a couple months to fully work. We have already seen some changes in Leah. She is very active with her eyes. She is moving her arms, hands, fingers, legs and toes (she has never really moved her toes). These are very small moments but she is moving. Also, when we hold her she tries to move her core, which totally freaks us out. When she does this we think she is going into a seizure but she doesn't she is just moving. It's been so fun to watch her interact with us. We are still trying to stay grounded and not get our hopes up too much! It feels so good to be on a new path. This doctor amazes me. She is working so hard to find out what's wrong with Leah. I am trying really hard to never live in the past but it bothers me that none of our doctors sent us to Dr. Swoboda. Leah's condition is exactly what she specializes in. I just have to leave it in the past and be happy that she is now our doctor.

By the way...what Leah has is extremely rare!!! Obviously right?!!

It's time to write to your Congressman.

The bill for CBD oil is going to be voted on this week. Please if you can take 5 minutes to write your Congressman. Here is the link http://hope4childrenwithepilepsy.com/how-to-help/ . Then click on: Make an impact Legislatively. It will tell you exactly what to do. It is very important that you follow the instructions. Please have your spouses, family and friends do the same. I can't express enough how much this means to us. It's our last hope! I've been thinking a lot about this and I really could be feeling a lot of emotions about it. There's times that I start to feel stressful, anxious and nervous. I really have no room in my life to have those feelings. I can't let fear control me. The thought that my daughters life could be in the hands of a bunch of politician's literally could eat me alive.  But I chose to only have one emotion...peace! Peace that everything will work out. Peace that God is in control and no matter what happens...everything will be okay!


Leah has been sick for over a week. She has a bad cough. She picked it up from her brother Tyler, who has had walking pneumonia for two weeks now. As soon as she started coughing I immediately took her to the doctor. Dr. Hornyik called her in an antibiotic and also a pulse oximetry to have at home. She also got suctioned out at the doctors office. Her pulse ox hasn't stayed above 88 so she is always on oxygen right now! Between being hooked up to the pulse ox machine, oxygen and her feeding tube it's hard to hold her. I also feel like we have a small hospital in our home. But she seems to be doing a little better.  Lauryn and I got it...it's a nasty sickness!!!

As I sat holding Leah while she was sick this week I really enjoyed having her snuggle up to me and peacefully fall asleep in my arms. This is very rare because Leah for some reason never naps and never falls asleep in the day. She cried a lot this week...sad because she clearly was not feeling good but I really loved hearing her voice. When she cried I picked her up and rocked her and sang to her. She would stop crying and fall asleep. It was so wonderful to have this moment with her this week. She loves when I sing to her. I have a horrible voice but every child loves the sound of their mothers voice. I love singing to her. I love to see her eyes light up when I am singing. It's the special way that we connect. It's God's little mercy!