Little Lucia: Family and Friends

Love this Pic-my dad, Scout, Lu and her grammy

Two weeks in Ohio with my parents, visiting with other families that have kids with PKS, enjoying our girls immensely, and praying for friends, have all been a part of our last few weeks. We had a great visit in Ohio spending quality time with my parents and while there we visited the DeSantis family. Their youngest of four, Isabella Hope, has PKS and like many of the kids, Isabella faces serious medical issues.

Bella and Bird Slumber Party!

The girls and I spent the night with their family about 3 weeks ago in Canfield, Ohio and we had such a good time. A beautiful cozy house in the suburbs of Ohio, filled with an active family of 6, a sweet golden retriever and cat, and tons of love and FAITH! It was so nice to share similar stories, to help with experiences, and so cool to just be with a family I would call my friends with or without PKS. Unfortunately, Isabella started acting a bit off that night. And now, after almost 3 weeks of suffering, and then having too close of a scare with breathing, her doctors finally decided to have surgery to have another g-tube placed-her original was too small. Today they are working on scheduling an emergency surgery at Cincinnati Children's Hospital to either remove or at a minimum drain and test a mass that is growing in her sweet 2 year old belly-pressing against her bowels, stomach, and more...We pray for you Isabella! During our Ohio time we also learned of the passing of Stirling Bargas, a 16 year old with PKS that unexpectedly passed due to cardiac arrest and complications with pneumonia. When Stirling was born and diagnosed there wasn't an organization like PKS Kids and just in the last few months his mom found PKS Kids and had let us into their families lives. After his last hospital stay, just 2 days before he passed, his parents had just renovated his room to have all his medical equipment ready for any more sickness that would come his way. His family is heartbroken. We've only gotten to know his mom, Sunde, through the site and just today she posted something that I want to share.
I have been struggling with the question of why did my son have to go. I think about his passing and i think to myself that he was such a strong boy. He has been a fighter since he was born. He has been more sick than this past time, and had knocked on deaths door a few times but always pulled through. So why did that change this time? Then my hubby said something that made sense. He said that Stirling was sent here for me. He was sent to change my life for the better, and when he saw that I was where I needed to be, he went back to heaven. He was right. I was a mess with no direction and no path until this special boy was born to me. He made me into the person I am today. I am the best person I have ever been because of that angel. And when my life was at a point where everything was right, and he knew I was going to be ok, he went. This makes sense. So thank you, my sweet boy. I miss you and love you so much. yes,mom is going to be ok and I cant wait to hug you and kiss you again (even though you hated that mushy stuff,lol). I just pray that I was everything you needed as a mom and you were happy with me...I am still gonna cry for you..sorry i cant help that. I love you Stirling!

Stirling Bargas from Hawaii

When we returned from Ohio we had the pleasure of hosting the Dickens family from Texas for a couple nights. They had come to Colorado for an event and decided to visit with us too, and we were so glad! Their youngest of 5, Sophia, also has PKS. It was so nice to spend time with them and get to know more about Sophia and see the interaction with all her siblings..the love that surrounds her. The day they left Sophia had a bad seizure and fever all day...we pray for her.

Kara from Rifle, Sophia from TX and LuBIRD!

All the kids! Mini PKS Reunion

Carolyn & Chris Hammond, Lana, Daniel & Sophia Dickens, Us, Bob and Kara Lynn

Lucia's friend Chris, who lives in Denver, has had over 5 cases of pneumonia's, hospitalized for most, just this year. Her friend Lizzie just got a 20 hour a day brace to help with her severe scoliosis-she is just 2 1/2. 3 year old Ava, who's mom started the PKS Kids facebook page has been in the hospital for the last month. The hospital stays and sickness list goes on with our network of PKS friends. We are reminded daily to count our blessings. We are reminded too often that life is precious and may not always last as expected. We are reminded that life is not always fair or fun, in fact it can seem awful at times. We are so grateful to have this group of support with families affected all over the world. Though often sadness visits the group, happiness and hope makes it's way in too. There are definitely too many procedures, too many pieces of equipment, too many Dr appointments, too many medications, too many unknowns, too many sleepless nights, but one thing that holds true is that there is so much love, it truly is unexplainable.
As we move into next week, we are thankful for our healthy girls and pray for peace to those that are suffering due to health or the loss of a loved one. Lubird, Scout Lumiere, Frieda and Blue-we are so thankful for you!