Just a few days ago, another of Ryker’s PURA siblings, 5 year old Jenna, gained her angel wings. Like Ryker, Jenna has the BEST siblings. Be thankful for your family, and consider giving to Jenna’s family in their time of grief, which is always unimaginable, but perhaps even more amplified by the holiday season 💔💙😢
Not sure what it is, but something about Target sends Ryker into his happy place! He loves going up and down the aisles touching the shelves and hearing his own joyous squeals echo throughout the store…. Big bro is awesome at helping get Ryker in and out of the cart 👍
We’ve taken an (unintentional) hiatus from Ryker’s pages while we spent some time juggling summer fun and birthday festivities! Big bro dutifully planned out Ryker’s dream birthday party with lots of friends and family joining his celebration. Ryker wasn’t the biggest fan of the heat or the hose water cold water slide, but he did like the cake and animals!
We’ve also been dealing with some negative things that only those in this special world can understand- the transition process from Early Intervention Services to the school district services. We are hoping the most shocking and stressful times are behind us and he can move on to smoother sailing as he begins the next chapter in his life- Preschool! We aren’t exactly sure what his Preschool experience will look like and there are a lot of remaining questions but are holding on to hope that his experiences moving forward will be positive for him and he enjoys school and his new therapy setting!
He is all set with all the “standard” back to school items- personalized book bag (birthday present!) nap gear, new clothes, etc. He is also set with his needed PURA Syndrome kiddo items- AFOs, gait trainer, activity chair, stander, Gtube emergency kit, SPIO suit, etc.
Never take for granted the ease with which your lives and children function. This is an entire topic in and of itself, but as school starts please keep this in mind.
Good dads really stand out in a crowd, and Ryker and Chase’s daddy is a step above the rest! Ryker and big bro had a wonderful weekend meeting new animals and swimming! It was quite the sensory adventure for Ryker, and it’s safe to say he wouldn’t have handled it nearly as well and definitely not had fun without big brothers help! Watching a sloth is only exciting when big bro is holding your hand…. petting an armadillo is super fun when big bro tells you it is…..bearded dragons ain’t no problem……then you get really adventurous and hold the snake when big bro won’t do it!
Ryker is blessed with one amazing big brother…. big bro is blessed with a little brother who willingly puts up with his shenanigans #winwin #worldsbestbigbrother #thankgoodnessforniceweather
To the mom who didn’t get “just a healthy one”:
A healthy baby .
That’s what you want.
Boy or girl? Doesn’t matter.
Just a healthy one.
With ten perfect fingers and ten perfect toes.
A tiny smile and button nose.
A brain that works as mine and yours.
Tests coming back with perfect scores.
A heart that beats strong—the rhythm of drums.
And the in and out breath of healthy lungs.
But then you find out it won’t be so.
An unhealthy child— so much unknown.
A journey full of winding roads.
Ups and downs. Such highs and lows.
A little one fighting for their life—
And you, strong beside them in perfect stride.
Just pushing them forward with all that you are— a mother who hasn’t backed down thus far.
This motherhood it will indeed be hard.
The heartbreak will leave inevitable scars.
Not a motherhood you had ever planned for—
But it won’t be less. It will be more.
More love needed and more to give.
An understanding compassion that is so so big.
You’ll learn to hope beyond all reason.
And lay down burdens in every season.
You’ll fight and give up and fight some more.
You won’t be stopped by seemingly closed doors.
You’ll give more than you knew you could.
And though you’ll grow weary you’ll still see the good.
Yes this child— unhealthy as they may be.
This child has allowed you so much to see.
Joy and beauty.
Pain and sorrow.
A gratitude for every single tomorrow.
This child is adored— a gift from above.
A newfound passion full of motherhood love.
So this is to the mother of an unhealthy child.
Who holds up her head, moves forward and smiles.
Your motherhood was not the way that you planned.
But today you love more— and stronger you stand.
we borrowed this from another post and the origin is unknown