This post is going to be a difficult one for me because as much as I truly believe the title of this post it has been very hard for me to actually do it. I know we need to live and I know we need to be happy and content with our "new normal" I just wasn't sure how to do that and feel comfortable and not scared out of my mind. Well this summer I believe I can now say I not only believe the title of this post but I have started to live it!!!! Let me start from the beginning......
On March 25, 2015 the words lissencephaly changed our world and twisted up into a big mess. A mess I didn't know how to clean up and didn't know if I was suppose to know how to clean it up. That day I wondered... would our life ever be the same, would we be able to do what we love, would we ever go on vacation again. How could I ever leave the house worrying about seizures and other medical issues that we worry about daily that could happen. Months after we left the hospital we didn't go many places for a couple reasons; first reason I'll be honest I was SCARED, it was March and flu season was still a little active, Emma was sensitive to illness and we still didn't have seizures under control and we wanted to be in a place we were comfortable when they happened. Once I had to return to work we had to venture out a little. The girls went to my parents (we were so lucky) so that was very very helpful in that I wasn't as nervous as I could have been. I packed so much and called and texted a ton. I hated putting someone else in such a scary position. After we started to losen up a bit and actually went to Bear Lake for the weekend Emma started to have Infantile Spasms (another type of seizure). Again we were scared and started to stay home again due to seizures and meds that compromised her immune system that was already sensitive. We had to stay pretty quarantined at our home for about 3 months 2 weeks on, 2 weeks off and then 2-3 months after that to get the meds completely out of her system. We were drained I felt so nervous to go anywhere I didn't want her to get sick and it to be my fault the guilt was just too much. Them winter came and we again were scared never letting anyone hold her and only ventured out if needed.
Emma started CBD oil in October of 2015. It was soon after that we got some seizure control and we felt more comfortable going out. But it wasn't until February that I got the feeling of "we've got this". It made me think back to something a great friend told me...."all you need to do is find your new normal and you will be just fine" thank you Brytten you saved me with these words. You helped me realize we need to live, our lives are different than before and that's ok we will figure it out. We took a trip over Easter that was amazing and we actually ran into Brytten and it was the best feeling to see us both living our "new normals" the best way possible and loving it! Since then we have been out sometimes all day at the zoo, movies, lagoon amusement park, water parks, the rodeo, parades and even had a camp out in a tent at Lagoon, yes a TENT. All of these activities may sound simple but a year ago I never thought this was possible. We will build to bigger things, save some money and hopefully one day Disneyland/Disneyworld!!! Saying Disneyland/Disneyworld and Emma in the same sentence was heartbreaking to me a year ago, now I can't wait for that day to come not sure when it will happen but I want to see both my girls together at Disneyland/Disneyworld. Saving, saving, saving.....one day!
Yes, I have to pack way more than I ever thought including emergency seizure meds, washcloths to cool her down if it gets too hot, medical info etc...but that's ok because I no longer feel like a prisoner. I am Brandon's wife, Ava and Emma's mom and I am helping them to have the fullest lives possible. We are going to live and love every second of it. We will try not to be scared to venture to new things. Ava and Emma deserve this..Brandon and I deserve this. So if your child has recently been diagnosed please know there is a future a beautiful one, maybe not the one you planned but an even better one....I promise. From the words of an amazing super heart mom, Brytten, find your "new normal" you've got this.
I do however feel I owe a lot of this new me to CBD Oil because Emma's quality of life has changed drastically. She smiles and laughs everyday, She has been 152 days seizure free (knock on wood) and she has so much more drive to learn in therapy. I have never felt so strong about something as this. It's not only changed her life but our lives too. And sometimes I believe it could have saved her life. If you will recall she was on 3 seizure meds and still having seizures. But yet she was a zombie and very cranky (especially on pred.) So happy I have my baby girl and even more blessed to know who she really is. I don't know if I would know her if it wasn't for CBD oil. Feeling blessed to have access and pray everyone who needs it will someday get to feel themselves again or even find themself like we found Emma.
Here are some fun pics of our recent summer ventures. Again nothing huge to most of you but to us and our "new normal" these are huge!
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| These are the smiles and laughter that I always talk about! This is our Emma Girl :) |
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| Having fun at Bear Lake |
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| Lagoon Fun |
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| Waiting for the parade to start - Parade was a little over simulating but we worked through it (we are searching for the perfect noise canceling headphones |
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| Happy 4th of July |
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| Napping before the parade |
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| No words....<3 |
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| Enjoyed Fireworks and she handled them much better than the parade. These 2 love eachother so much! |
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| Utah Falconz Football Game - Good luck this weekend Falconz - GO FALCONZ! |
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| Ava helped Emma make her first Build - a - Bear |
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| Emma can now play with big sister on the swing set and she is pretty happy about it! |
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| Life is Good |
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| Swinging Beautys |
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| Resting up from so much Summer Fun |
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Lagoon Campout....IN A TENT
(this was a huge step for me especially with no hookup for her Owlet but I lived lol) |
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| Bull Rider - made it all 8 seconds good job Ava |
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| Celebrated 16 months at the Days of '47 Rodeo - Thank goodness for ear plugs - still dont have headphones |
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| Rodeo |
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| Emma can now roll to her side in her bed. She is getting so strong the mattress use to keep her from rolling she wasn't strong enough...well look at her now. Thank goodness for the Owlet it helps me sleep when she's moving all over. |
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| If you didn't already know....I/we support medical cannabis in Utah! |
Here's to more adventures and living life to the fullest. Our lives are precious and were ment to be lived. So don't let the unknown scare you away from living. Let's Embrace Life and live it to the fullest!
~ Goal.....DISNEY!!!!- We will make it and I am so excited for that day!~
