"My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.
On Christ the solid rock I stand;
All other ground is sinking sand.
All other ground is sinking sand."
This song has been stuck in my head all weekend. Even though it was written in 1834 by Edward Mote, the words are timeless and still relevant today. Mote knew what it meant to misplace trust and hope into "the sweetest frame." What are the "sweetest frames" of this world? Perhaps they are structural, like the frame of a house you believe will provide safety and security? Maybe it is your earthly frame, such as the appearance and health of your body? Or perhaps you are placing your hope in ideological frames such as politics and finance? Or maybe Mote was referencing your "frame of mind" - something we all know can change from positive to negative in the blink of an eye?
So much in this life is unstable and uncertain but the promises of God remain secure. This song is such a beautiful reminder of the love, hope, and stability that is found only in God's grace. .
Edward Mote really got it....at the end of his career in ministry, his congregants offered to put the deed of the church in his name, but Mote refused, stating, "I do not want the chapel. I only want the pulpit; and when I cease to preach Christ, then turn me out of that." What a profound message! Mote had a true understanding of what remains and what will always be slipping away....
You see, we can not be strong and brave without feelings of fear…..one does not exist without the other. The very definition of bravery is the “quality or state of having or showing mental or moral strength to face danger, fear, or difficulty,” and strength only comes when we push ourselves beyond what is comfortable.
This song has been stuck in my head all weekend. Even though it was written in 1834 by Edward Mote, the words are timeless and still relevant today. Mote knew what it meant to misplace trust and hope into "the sweetest frame…..
This quote really speaks to me and resonates with our family’s journey raising a child with special needs. I truly believe this pertains to ALL children but is particularly meaningful to parents raising children with various disabilities and medical challenges. There is a science and an art to gardening. Some flowers need lots of sunlight, while others thrive in the shade. There are certain flowers that are resilient and hardy and need very little water or care, whereas others need to be watered daily and require plucking and pruning.
Writing this post is really difficult, because it plays to one of my worst fears as a parent of a child with special needs. The timing is ironic, as I literally just sat with a friend in a coffee shop over the weekend and shared this fear….that my daughter, Taylor, will be treated poorly or subjected to verbal or physical abuse, and that I will not know about it. Every parent fears this, but it is most concerning to me because my daughter is nonverbal. She would have no way of telling me what happened.
One year…..One year since we received the call that would firmly change the projected path of our lives. Early in the morning on January 11th, 2018, we received answers for our daughter’s developmental delays. PURA Syndrome - the first time I would hear the name of this rare genetic condition. Knowing provided answers, and a community, yet also leaves us with many questions, as is the case with most rare diseases.
I started this blog in May of 2018, about four months after Taylor was diagnosed with PURA Syndrome, a rare genetic condition affecting approximately 200 individuals worldwide. I wasn’t really sure what I wanted to do with it at the time, but I knew I wanted a quick way to update the many people who are very interested in Taylor’s life, and also wanted to bring awareness to my daughter’s condition and other rare diseases.
Chick-fil-A, would you like a review of a recent experience at one of your restaurants? It would be my pleasure! Anyone who dines regularly at a Chick-fil-A is well aware that these folks know how to provide quality customer service. It’s a bird, it’s a plane….NO, it’s your local Chick-fil-A worker!!! Chick-fil-A sends people into the rain and snow to cut down on your drive-thru time, they will walk your food to your table and bring a high-chair for your child, they will ensure you have ample sauce, straws, your beverage is never empty, and your trash is cleared, and respond to your expression of thanks with a cheery “my pleasure.” They are pretty much A-M-A-Z-E-B-A-L-L-S!
Last, but not least, here is a list of some of our favorite toys to promote standing and walking. Check out some of our other recommendations to encourage tummy time, sitting, and crawling. Taylor did NOT enjoy standing for a long time. I think she felt extremely unstable and she tends to be a bit cautious in general These particular toys kept her engaged and interested while in standing and really motivated her to be on her feet!
We’ve covered our favorite toys for encouraging tummy time and sitting, and now we move on to crawling. Crawling requires significant strength and coordination, as well as the ability to plan and execute movement, also known as motor planning. Crawling is going to improve core strength and postural control, as well as strengthen muscles in the shoulders, arms, and hands.
It will take several months to build up the strength and coordination for your little one to sit. I was so excited when Taylor was able to sit up (even propped) as it seemed to give her a new view of the world and she became even more engaged. The items that will be listed below were particularly helpful for us as Taylor made the transition to sitting independently.