In honor of Rare Disease Day for NORD, celebrating their 30th Anniversary this year next month, I would like to get some awareness out about the rare disease that has turned our family upside down.For my family and friends who often read this blog already knows LilyAnna Blu suffers from CDKL5. CDKL5 is a gene that …
I love Christmas and New Years. I think I just adore the entire month of December and feel blessed to have my birthday during a month of such heightened happiness. Although I find myself probably the most stressed out during December it is because I suffer from a rare condition called indecisiveness paired with an acute case …
I honestly delight in knowing my positive outlook helps others. I am filled when others say “you give me perspective”. I live with the mission of taking what we get and seeing the good in it and sharing that good. We’ve been through a lot. Not anymore than anybody else, we all have trials, but I think …
It’s been crazy. Like I haven’t rested this week until my butt was in my bed by 10pm each night and up and at em at 7am each morning.This week I became another year older and I pray wiser. I was a lucky girl to celebrate that event with very important people in my life. …
This morning was a little different from the others. For starters I woke up to Oliver’s cute face. Oliver has been having a really hard time falling asleep in his new room and last night fatigue won out for me so when he came into our room and asked to cuddle I said “come here” …
I have been sharing all the things I am grateful for during this month of thankfulness and it has been a real eye opening experience. Some days I struggled with what to give thanks for beyond God, my family and friends. I was able to do some stretching of course some days, but other days …
There is never enough hours in a day nor money in the account, right? It sure seems this way. But I know we are blessed. So blessed. I have so much I want to share and write about, but my time is short. We are almost done moving. A few things left in the old place we …
Unfortunately I heard what I knew I would hear.Lily went from 23 degrees to 45.We are going to brace her with a softer brace with pretty lax rules when she is home so she can roll around on the floor still.Got rx to go back to wheelchair clinic, I called to schedule, but gal was …
Ever see Stand by Me? You have to have seen Stand by Me! I love that movie. Just recently it was on Nick at Night and we watched it with Andi Jane. She loved it too. How could she not. Such a great movie! But as I watched it I paid attention to things I …
A friend posted this link on facebook CLICK HERE and that friend isn’t even a special needs parent friend. Just a typical parent who has compassion for others and his ears sting as well when hearing the word retard in a negative way.I am not going to go all ape poo on the word and people …
Calm Amongst the Chaos 