Friday, July 29, 2011

My special little friend

Last year around this time a very special little boy (and his awesome family!) came into my life.

His name is Juan Pablo and he is 2 years old.

Last June one of our Monterrey friends, Sylvia, had gone to a funeral for one of her neighbors. She was so moved by the sermon that the priest had given that she felt compelled to go up to him after the service and talk with him. She told him she was on her way to visit a friend who had been sick in the hospital for a long time (me). The priest asked her if she would like a ride, because he just so happened to be on his way there too.

She accepted his offer and when they arrived at Hospital San Jose, the priest, Father Carlos, decided to come up to the 8th floor with her to meet mom and I and to pray with us.

It is a visit I will never, ever forget.

I was feeling very discouraged that day. My discharge plan from the hospital had fallen through… again… because I was sick with yet another infection. I was feeling miserable. Father Carlos spent time listening to me and than prayed for me. He told me that God knew what He was doing, even if I don’t ‘get it’ right now. This delay in leaving the hospital was for a purpose… he assured me, His answer is the right answer and His timing would be the right timing.

I definitely needed to hear that message and I know God used him to speak it to me that day, but it is what he told me next that will make me remember the visit forever.

He said that the reason he was visiting the hospital was to see a little boy who was in the pediatric ICU on the 4th floor.

He then shared with me the story of this brave little boy, who had spent most of his nearly 2 years of life, fighting for it, in the hospital.

This is Juan Pablo. He's 2 and he's adorable!

Juan Pablo was born with Metatropic Dysplasia, which is really rare form of dwarfism. It’s so rare, in fact, that he is the only known case of it in all of Mexico!

He is the youngest child of his amazing parents Roger and Marus. They have 3 other children- Paulina, Roger Jr. and Marianna. Metatropic dysplasia is a genetic condition, however, no one else in his family has it.

This type of dwarfism causes major problems in the musculoskeletal system such as limb deformities, joint contractures and scoliosis. Juan Pablo’s spinal curvature is so extreme that it has compromised his respiratory and digestive systems, leaving him dependent on a ventilator to breathe and on a feeding tube to eat.

The top specialist for this disorder is Dr. Mackenzie at DuPont Hospital in Delaware, where he has traveled to for spinal surgery and follow-up care. He will probably need to have numerous surgeries there in his lifetime.

Ironic how Juan Pi has to travel to the US for his treatment, and I have to travel from the US here.

He is in many ways my kindred spirit… We both have spent a lot of time in hospitals far away from the comforts of home.

I had a huge stuffed animal bear in my hospital room, a gift from my dad, that I called “Monty” (short for Monterrey!) I told Father Carlos that I wanted Monty to go down in Juan Pablo’s room. I know how lonely, long and scary each night in the hospital is and I knew Juan Pablo needed him more than I did. After all I was 22... he was only 2!

Juan Pablo's amazing family with Monty

The next day Juan Pablo’s family came up to my room to get the bear. Hearing what their little son has gone through in his short life… wow. Talk about a wake up call! They are such an incredibly strong family.

From that point on whenever I was having a rough time I just thought of Juan Pablo and I got the strength to get through it, whatever it was.

Juan Pablo's family's nick name for him is "Juan Pi"-- they also call him "Cham Pi"-- short for Champion. And that he certainly is!

Juan Pi has been back in Hospital San Jose for nearly 1 month now and is still unable to be transferred back onto his regular home ventilator without being unable to get enough oxygen and having episodes of tachycardia. His liver is enlarged. His lungs are full of secretions. He is sick.

I know those words that Father Carlos spoke over me are true-… There was a purpose in that delay for me—and I know part of that was so I could come to know Juan Pablo and his family. I consider them a part of my own and I love them so much.

God has a plan for Juan Pi, I am sure of it. However, right now the thought of him laying in that ICU instead of being at home with his loving family really breaks my heart. I wish there was something I could do for him… but I think the best thing I have to offer is prayer.

So I’m writing this to ask everyone to please keep him in your prayers too. He needs to get better, he just has to…

Keep fighting little Champion, You are so loved.


Thank you for praying for my special little friend.

…God’s timing is always the right timing and His answer is the always the right answer…

In God’s love,

Jessica

PS- Today is Juan Pi's amazing father, Roger's, birthday! Happy Birthday Roger and thank you for being such a great example of unconditional fatherly love to your son, even under the most difficult circumstances.

**To post a comment click "comments" below**

12 comments:

  1. Psalm 145:18-19

    18 The LORD is near to all who call on him,
    to all who call on him in truth.
    19 He fulfills the desires of those who fear him;
    he hears their cry and saves them.

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  2. God has brought many new people in your life that you probably would not have met had you not had lyme and RSD.

    What must that tapestry look like from His heavenly prospective? Every thread precisely and lovingly placed.

    We will pray for Juan and His family. We have seen God perform many miracles down in Mexico and we will pray for one for Juan.

    With love and prayers,
    The Turners

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  3. Give me your eyes

    Look down from a broken sky
    Traced out by the city lights
    My world from a mile high
    Best seat in the house tonight
    Touch down on the cold black top
    Hold on for the sudden stop
    Breathe in the familiar shock
    Of confusion and chaos
    All those people going somewhere
    Why have I never cared
    Give me your eyes for just one second
    Give me your eyes so I can see
    Everything that I keep missing
    Give me your love for humanity
    Give me your arms for the broken-hearted
    The ones that are far beyond my reach
    Give me your heart for the ones forgotten
    Give me your eyes so I can see
    Step out on a busy street
    See a girl and our eyes meet
    Does her best to smile at me
    To hide what’s underneath
    There’s a man just to her right
    Black suit and a bright red tie
    Too ashamed to tell his wife
    He’s out of work, he’s buying time
    All those people going somewhere
    Why have I never cared
    Give me your eyes for just one second
    Give me your eyes so I can see
    Everything that I keep missing
    Give me your love for humanity
    Give me your arms for the broken-hearted
    The ones that are far beyond my reach
    Give me your heart for the ones forgotten
    Give me your eyes so I can see
    I’ve been here a million times
    A couple of million eyes
    Just move and pass me by
    I swear I never thought that I was wrong
    Well, I want a second glance
    So give me a second chance
    To see the way You’ve seen the people all along
    Give me your eyes for just one second
    Give me your eyes so I can see
    Everything that I keep missing
    Give me your love for humanity
    Give me your arms for the broken-hearted
    The ones that are far beyond my reach
    Give me your heart for the ones forgotten
    Give me your eyes so I can see
    Give me your eyes for just one second
    Give me your eyes so I can see
    Everything that I keep missing
    Give me your love for humanity
    Give me your arms for the broken-hearted
    The ones that are far beyond my reach
    Give me your heart for the ones forgotten
    Give me your eyes so I can see

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  4. Thanks for the story. I heard it from your mom but it was good to hear it from you and how it impacted you. I, too, try to look outside myself. It is hard to explain to the able bodied, but we see God in so many more things! Looking out instead of in, gives us strength, courage and purpose. God is a fine example to follow! I am praying

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  5. Hi Jessica,
    Thank you for sharing the story about Juan Pablo. He is an amazing gift from God to this world. Thanks also to you and your Mom for giving us the chance to meet his wonderful Mommy, Marus, yesterday. Their family is in our prayers and we hope to be able to spend time with them anytime they need to travel to AI duPont hospital in Delaware.
    Love,
    Kathy, Mark, Kerri and Erin

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  6. Dear Jessica,

    Thank you for sharing Cham Pi's story with us. He is one beautiful a little boy -- how wonderful to have that precious face in our thoughts as we remember him in our prayers.

    Thank you also for continuing to share your journey with us. I so look forward to "hearing" from you & often find myself reading & re-reading your blogs. You are an inspiration . . . And quite an amazing one at that!

    So look forward to hearing from you soon . . .

    With our love & warmest wishes to you & your Mom
    The Klatts

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  7. Dear Jessica,

    The word "bittersweet" comes to my mind as I read your beautiful, yet heart wrenching story.

    You truly are "Kindred Spirits" with Juan Pablo. God gave him to you as well as he gave you to him. I was honored to be able to meet Juan Pablo and his family when John and I were there last year. They are an amazing family. I remember thinking how unusual it was that I was in touch with not 1 but 2 amazing families in the same hospital (of course, I mean you and your Mom). God brings people into our lives. Sometimes, we do not grasp the moment to meet with strangers and we miss what beauty they would have offered to us. We have to be open, to let others into our lives, and you are such an example of someone who is open.

    Thank you for reminding us once again, that we are so fortunate to have what we do have when there are so many people around us who struggle everyday for the most basic of needs, like breathing.

    We will remember Juan Pablo and his family is our prayers as we ask God for His mercy upon J.P. and his family.

    Love you!

    Rosemary and John
    xoox

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  8. Sweet Jessica, you are so amazing and loving to all you meet. Juan Pablo and his family are given strength and hope by your example of faith. We all so dearly love you and your Mommacita Sarah Gina!
    hugs from Nancy & Jose'

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  9. Jessica,

    My son also has MD like JP. We are friends with Marus on Facebook and had the pleasure of meeting her and JP in Delaware back in May. Their family is an incredible source of inspiration for all of the families in our MD group. Thanks for posting such kind words about them.

    Kale

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  10. Jessica: i've been sitting here for a whole night reading your story after finding your original news video on youtube. I've never been so amazed at a persons strength. For you to be caring about another persons suffering really makes you an amazing human being. You can make it through anything. Keep strong & keep praying.

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  11. Jessica, today I was at Dallas Airport and they called out that there was a Sunday service for anyone wishing to attend between flights. There was a reason I had a 3 hr layover....I was meant to hear how it is in God's time and God's plan that we are all instruments of his love. You are that for sure and so is Juan. thanks for reminding us that things happen and for a PURPOSE! To Glorify God with our lives in special ways. Thank you Jessica!
    Love Nancy

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  12. Dear Jessica, The word "bittersweet" comes to my mind as I read your beautiful, yet heart wrenching story. You truly are "Kindred Spirits" with Juan Pablo. God gave him to you as well as he gave you to him. I was honored to be able to meet Juan Pablo and his family when John and I were there last year. They are an amazing family. I remember thinking how unusual it was that I was in touch with not 1 but 2 amazing families in the same hospital (of course, I mean you and your Mom). God brings people into our lives. Sometimes, we do not grasp the moment to meet with strangers and we miss what beauty they would have offered to us. We have to be open, to let others into our lives, and you are such an example of someone who is open. Thank you for reminding us once again, that we are so fortunate to have what we do have when there are so many people around us who struggle everyday for the most basic of needs, like breathing. We will remember Juan Pablo and his family is our prayers as we ask God for His mercy upon J.P. and his family. Love you! Rosemary and John xoox

    ReplyDelete