Little Things

I definitely need to update more, but we are just busy here in Colorado living our lives. It is amazing how we can simply do that now, and truly participate in our community, now that Maddie is on Charlotte’s Web. There are so many neat things happening with her. Many of them are seemingly small, but when you put them all together, it really adds up to an amazing difference in her quality of life.

First Pedicure (Attempt)

Here are a few things that have happened recently:

Maddie has started asking for her medicine when she first wakes up in the morning. This is a tough seizure time for her, as it is for many kids, just upon waking. But now she will say “mememin” (medicine) first thing and take it easily. Who knows if it’s because she knows her oil helps her not seize or if it is just knowing her routine now? Doesn’t matter to me, it is definitely an improvement in cognition for her. She is sick right now and has a fever, and for the first time in years, I don’t have to wrestle her down to give her Tylenol or Advil. She takes it willingly as long as I tell her that it is going to make her feel better.

 

We were baking cookies for her and I was multitasking with Maddie on my hip. The timer had already gone off and I had silenced it but decided they needed a minute longer. So I got distracted again, messaging with a friend. I looked up and said , “Maddie, what was I doing?” and she said “cookie” and pointed to the oven. Yes, it was probably because she was focused on the cookies the whole time, but being able to appropriately reply to my question and remind me what she needed is a huge step for her.

 

When Maddie is in the car, she has a huge assortment of toys and books to play with. Favorites are the iPad and a toy computer. Sometimes these inadvertently get turned off or on the wrong app. Which used to mean they would get thrown out of her reach. But now, she will say a phrase which is really close to “Fix It” and reach out to hand it to me.

 

Little things really make all the difference. 

 

On a related note, I am fundraising now for the Realm of Caring. Our current crowdfunding campaign, Raise the Realm, is aimed at expanding the diagnoses that they can study cannabinoid use in. This campaign will also help reduce the cost of Charlotte’s Web for some deserving patients. The Realm of Caring already began studying use of CBD for epilepsy in its IRB approved Observational Research Registry at the end of last year. Funds being raised now will allow them to study cannabinoid effects on cancer, MS, ALS, and Autism. Based on the amazing results we have seen in Maddie, I can’t help but believe that there are many other conditions which will benefit from CBD and other cannabinoids. We certainly see enormous neurological benefit in her and look forward to seeing how it can benefit others. Please, if you can, donate to this fantastic cause and share it with others!

 

Here is the link to donate!

 

Between now and March 4th, anyone donating $50 or more will be entered to win a pair of  VIP tickets to 2015 Bonnaroo. Do it! Thank you!

 

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4 thoughts on “Little Things

  1. It is wonderful to hear she is making such progress! We continue to lift her in our prayers at Christ Church Charlotte every Wednesday in our healing service.
    Lynne LeBlanc

  2. Every time I read one of these, I get tears in my eyes, it is sooooo wonderful!! Love you Maddie, you keep fighting little one…

  3. Liz, I just read your family’s story in Good Housekeeping. From one mom to another, I had to reach out. I just wanted to send love and good vibes.. Peaceful thoughts.. Tell you how your story pulls at my heartstrings. How brave and strong you are to have survive everything you have. You are doing everything right. I shake my head in sadness and disgust at anyone who judges the use of medicinal marijuana in a negative light. How sad it is that people live in such ignorant closed boxes not willing to open their eyes to new research. Above all else, judging a mother’s will to help their child in any way they can, is wrong and inexcusable in my eyes. I know the connection you have to your child surpasses even words. The willingness to do anything to help your child.. Your daughter will thank you someday for being such a wonderful, strong mother. Keep doing whatever you feel you need to do for your daughter. I’m so happy you found something that helps. Congratulations on everything you’ve accomplished. Wishing your family lots of peace and love!

    A mom on your side,
    Jessica

  4. I have never commented on an article before. I am reading the Good Housekeeping article to my son as we drive to his new duty station from California to Seattle and we are both so moved by you. The love that you and your husband have shown for your precious Maddie just l warmed my heart, And though my tears, I just felt led to write to you. I think you are an amazing mother. You are truly are an inspiration to everyone. As a mom, we will go to the ends of the earth for our children and you have done that! You are an incredibly strong woman and Maddie is so very blessed to have you as her mother. May the Lord continue to bless you and your beautiful family. May God bless you with the strength you need to keep the fight. You are Maddie’s voice right now and I pray someday she will be able to tell everyone what you have done for her. Although she may not be able to tell you right now, but she knows. I know with my children I can look in their eyes and know.
    Many blessing to you,
    Janey B.

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