Katie's Dream for a Cure feeling frustrated at Lucile Packard Children's Hospital Stanford.
19 November at 12:14 ·
Katie Grace has been intibated for 2 months now.
Katie Grace's mom:
So stinking super frustrated and upset with our team today. Katie Grace finally got to a point they are willing to extibate her yet after 2 month of living like this they don't feel it's emergency to get this gosh darn tube out. Average length of time for intubation is 14 days. Hello people. Why make her suffer and possibly cause more damage We were supposed to do it this week now "maybe " next week
|Katie has already endured a lung transplant that was supposed to|
cure her PH. It didn't.
So I was asked this week if I thought what we are doing is what she would want? Katie Grace is by far one of the strongest fighters I know. I am not sure what will happen here. I know my prayers are for a true miracle. Today they had to place another chest tube. 😢.
Yes she has been doing better but 2 steps forward 1 step back. But tonight Katie Grace surprised us all when she did this while listening to last year's cvchs (high school) doing "Everything is Awesome " always able to find her joy
|Progress is measured in small steps|
Concord, CA, United States · Edited ·
For all Mothers of children with PH:
"When children come face to face with the Goliath's of disease — cancer, heart defects, cystic fibrosis, brain injuries and many more — it’s their mothers who gather the stones that this child will use to fight the fearsome foe. We often revere the doctors who take care of these little ones, and it’s true, they are heroes. They make the stones so that we have weapons with which to go into battle. But often, there is a forgotten hero: the mother who gathers each and every stone, places it into tiny hands and stands by while her baby takes his best shot.
Mothers who take care of children with serious diseases don’t have the same luxuries that the rest of us have. Every parent carries the nagging fears: What if something happens to my child? Will I be able to give my child all the things they need to help them live a happy, healthy life? How can I help them realize their full potential? And perhaps it all comes back to this question: Am I enough? Am I enough to give my child what she needs?
But, for mothers whose children are healthy, we can put those fears on the back burner. We don’t often have to look that scary monster in the eye and face the reality. We can hide our heads under the covers and pretend that as long as we can’t see the monster, he can’t come and get us. For mothers who are battling a child’s illness, that’s a luxury they cannot afford. They are forced to face the monster head on, and their monsters look like this:
* Explaining to a child why they must face yet another surgery that will bring incredible pain.
*Holding frail little hands as they vomit and lose their hair and cry from the pain and frustration of chemo and explaining why the medicine seems so much worse than the disease.
*Navigating the fine line between protecting the health of your medically fragile child and allowing them freedom to experience the joys of childhood.
*Grieving the loss of the child you envisioned yours would be and coming to accept the reality of the one you have.
*Managing the guilt that you carry for so much of your time and energy being focused on your sick child, knowing that your well children need you, too.
*Talking to your child about the reality of death, knowing that you would trade places with them in a second if you could. But instead, you’re faced with the heart-wrenching task of letting them go on before you.
These are just some of the burdens that the mothers of sick children carry. They carry them around every single day, and the weight is heavier than you and I can possibly know. What is astonishing, though, about this thing called motherhood is that somehow, someway there is still incredible joy. Their pain is deep, but their joy runs deep, too.
They are faced with the harsh, unfair realities so they’ve been forced to clarify what is truly important to them. They know that the most precious parts of their lives may not be around forever, so they’ll appreciate every moment. Their child’s illness has given them a higher calling, a purpose in life that is beyond any desire they’ve ever had. They know exactly what they’re fighting for.
For the rest of us who look at these mothers and think, “I don’t know how she does it,” know this: It’s not their abilities that are superhuman, it’s their love. It is this intense love for their child that pushes them out of bed every morning and forces them to keep going, no matter what odds are stacked against them.
Look around at the mothers who are fighting for the lives and well-being of their children. Let them know you recognize that you can’t possibly understand what it’s like to walk in their shoes, but you know enough to appreciate every single step they take. Share in their hopes, their joys, their triumphs and their disappointments. Listen and learn: Their hard-won wisdom will take you far.
But most of all, love them. Love them well because they have loved others well." by Courtney Schmidt.
Beautifully written, Courtenay. Thank you for sharing. You are my hero today in representing all mothers of PH children and other seriously ill children. God bless you.