My heart hurts tonight.   We have waited for this trip for months.  We have prepped Nathan and prepared as best we could.  However, we have realized that this disease has stolen so much from him.  It hasn’t even been a year since he was diagnosed,  but it is like we are a year too late for this trip to mean something.   I am hoping that once we get to the Make-A-Wish portion, it will change.   The crowded places are just too much for him to handle,  he can’t cope and he just melts down.  We have had a hard time being among large groups of people.  Guess what, you can’t quite avoid that here.  We have been able to ride 2 rides since we arrived because we just can’t stay in one place. 

We are taking it all at his pace and catering to his needs, but it was been hard to watch.  Madison had been amazing on this trip.   She is such a fantastic big sister, who very much wants her brother to have the trip of a lifetime and doing anything in her power to help.  She has been a tremendous help to us.

We have had some good moments and met a few really nice people who have taken the time to understand Nathan’s story.  When you take the time to understand people are kind and compassionate.  Unfortunately, we aren’t able to talk with everyone we come in contact with, so I am not sure what they are left to think.  I hate the idea that someone might think poorly of Nathan based on his behavior in a bad moment, but that is the reality.

We go to bed every night praying that the next day will be just a little better.  I am surprised by the amount of patience we have all had.  We have all done really well at not letting it get to us.  We are clinging to the little moments of good.  The sweet smiles, the hugs and kisses and the little giggles carry us through.

Please continue to pray for peace for Nathan.  We want this trip to be good for him.  Pray for all of us to have some amazing family time that we will remember forever.








15 thoughts on “Heartbroken

  1. praying for all….the disease maybe cont on but I so hear your resolve over it to not steal everything……let us pray you through the days and night ahead..Blessings and Hugs

  2. Hang in there you guys! Don’t worry about what other people think. Just keep stealing those ;little moments of fun…praying for you all!

  3. Angelia Nichols March 8, 2016 — 6:30 PM

    Thank you for the update, I’ve been thinking about you all week, hoping it was going as well as it could. Bless each one of you, and your daughter esp., for being such help. Continued prayers for your family ❀

  4. All I can tell you is what I think when I see a child struggling like that. I say a prayer for peace and calmness to come to them. At no time do I ever think poorly of them or their parents. Ever! I know as a parent I think others are judging me but rest assured. They are not. They are praying for you. I pray that he can enjoy and you can all enjoy at least some moments of this trip even if they are few and far between I know you will all cherish them.

  5. Don’t spend so much energy thinking about what other people think. Cherish those small moments, they’ll be the ones you remember. Embrace what you have, right here, right now!

  6. Prayers for all of you. Hope it’s the best it can be !!!! Peace, patience, and best wishes πŸ’™πŸ’šπŸ’›πŸ’œ

  7. Frank and Diana LYONS March 8, 2016 — 11:17 PM

    I love you each. I like April’s hugs therapy.

    Hug fest is best when tenseness pests.
    Hugs arrest and restore best. 😊

    author unknown. πŸ˜„πŸ˜

    Date: Wed, 9 Mar 2016 00:37:09 +0000
    To: difrmaria@msn.com

  8. Praying for each one of you – for comfort, for strength, for peace, for laughter and grateful that God has blessed Nathan with an amazing family to walk this journey with him. Hugs and Love, Elizabeth B.

  9. Enjoy the special moments… Those who don’t understand don’t deserve one thought during your time together. We’re on your side.

  10. Our thoughts and prayers are with Nathan and his family who love him so much. God bless each of you through this journey. We pray for peace over Nathan and we pray for strength over you.

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