magic

Last week Drew and I went out looking for cool stuff for our fairies.  My mom reminded me that fairies liked stuff they could find and that they are woodland creatures so we tried to stay as “foresty” as possible.  Grandma helped plant the plants and get them in order and then we decorated it.  So much fun. 

Drew has been having fun collecting rocks, pinecones, and sticks and rearranging the garden. 

It may have to be a yearly tradition. 

For all my friends

The mom of one of Hank's pacer/heart brother posted this article on Facebook. It was an article I wanted to share and not forget...

Remember the mothers of sick children

Courtney Schmidt, PharmD | Patient | May 11, 2014



“Motherhood is the hardest job you’ll ever love.”

I’m not sure who first coined that phrase, but its truth becomes clearer to me everyday. And nowhere is that truth more evident than in mothers of children with a serious illness.

Throughout my years of working at this hospital, I’ve had the privilege of knowing dozens of moms who find themselves within these walls fighting for the lives and wellbeing of their beloved children. We look at them and say things like, “I could never do what you do,” and “I don’t know how you manage it all.”


But the truth is, they don’t know how they manage to keep it together, either; it’s just that they don’t have a choice. They fight because their children need them to fight. They keep going because if they don’t, who will? They learn to put their own needs and wants aside because they value the life of their child much more than their own.

When children come face to face with the Goliaths of disease — cancer, heart defects, cystic fibrosis, brain injuries and many more — it’s their mothers who gather the stones that this small 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.
Cradling your baby in your arms as his worn-out body takes in his last breath.
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.

On this Mother’s Day, 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.

Courtney Schmidt is medical communications editor, Arnold Palmer Hospital for Children, Orlando, FL. She blogs at Illuminate.


- Posted using BlogPress from my iPhone

light

We went out to take some pictures in the field across the street.  Drew had fun posing for my camera, but seriously, to get Hank to sit still would take a miracle.  I guess we’ve reached that age with him.  Maybe as soon as he starts communicating more we can get him to hold still occasionally for a fun picture.  It was really bright out, and I didn’t do the greatest job compensating for the light, but we did get a few interesting pictures and in some cases, the sun did us some favors!

The tried and true funny face.  He can’t get over it. 

Had to document the worst shirt ever made.  Drew had to have this shirt from the store the other day and I caved.  He loves it, and wants to wear it constantly.  Sigh…

The catch of the day, more rocks to add to his collection. 

A few more of this guy. 

boys

best brothers

Monster protection provided by Carl, Fox, and the Wonder Pets.  

Hank trying out the wagon and his shades. 

Disneyland 2014

Steve’s high school students had another robot competition in Anaheim again this year, so we made a family trip out of it.  Grandma Suzie and Grandpa Mike came along to help me out with kids since Steve would be busy with the highschool kids the entire time.  We sure appreciated them coming along and hope they had some fun. 

On our way…  Hank’s second airplane ride.  Went pretty good.  He fell asleep watching the wiggles.  Oh, and miss Emma Wiggle liked his instagram pic and said “It’s not wake up Lachy now” 

Hank got a special disability pass.  Disney has started this new system to help the disability system they had in place from being abused.  Basically, since it’s a bit harder for Hank to wait in line for too long, we can either bring his stroller all the way to the front and use it as a “wheelchair” and he had a handicap pass on it or this little card was used as a “fast pass” and we were able to have a shorter wait time on any ride Hank would be attending.  It was a good system and we didn’t even use the pass that much. 

Getting on and off the rides gave Hank a lot of anxiety but he did pretty good.  He enjoyed the rides once he was on them. 

The boys ready for the day!  Me and mom (mostly Mom) crocheted this hats for Disney.  I actually have a Minney Mouse one too!

The castle (I’m still trying to figure out my new point and shoot so the pictures are not what I’d hoped- it’s a Canon G1x if you wondered). 

Before the Disney Jr. Live Show – A must see!

Look at that line for Radiator Spring Racers!  Drew liked that ride, but thought “it was a little fast” 

Mater with Drew and Grandpa

Drew and Mom with Lightning!

Official!

On Tractor Tippin’ with Mater and Drew hanging in our hotel lobby

Told you Grandpa was the best!

Character Sightings

Drew had a fun walk with Donald Duck!

Parades and Corndogs. 

Character Breakfast at the Grand Californian. 

Drew’s adventure on the Tower of Terror.  He was really scared to get on but he did it.  The whole time, everyone in line kept asking Drew how old he was and telling him he was so brave.  Ultimately, he was mostly scared of the story, concerned that he would get electrocuted and disappear.  The dropping of the elevator didn’t but him that much.  The whole rest of the trip, about every hour Drew would ask us if we were going to Tower of Terror and where it was.  He was making sure we didn’t find our way back there.  If you ask him about it he will tell you “I was a little bit scared but a lot brave.” 

Ok, side note.  Back to my younger years.  We were eating lunch in California adventure and I look to the table next to us and there is Tiffanie Amber Thiessen from Saved by the Bell.  So funny. 

Hank had a good first Disneyland trip and was taken great care of by the cast members.  My mom had Hank out and about in the World of Disney store.  One cast member asked about Hank.  He wanted to know what was wrong with Hank, if he would be okay, etc.  So nice.  He took extra care and got Hank all the buttons he could find.  He asked my mom to wait for a minute.  HE went back to the art department and then into a back room.  He was gone for a few minutes.  When he came back he had this special photo/art signed by Mickey Mouse himself.  How awesome.  We later found out that Mickey Mouse doesn’t sign pictures that much and Hank is a lucky boy to get such a treasure.  Such great people in this world. 

Successful Disney trip yet again.  I think we will wait a few years to go back this time.  Maybe?