Friday, September 20, 2013

there's little hearts involved

As we continue to process and learn all that surrounds Lowe’s Syndrome I go through the ups and downs of fear followed by Christ’s peace and comfort.  Just yesterday I received the book I ordered filled with information for parents of kids with Lowe’s.  The words of that book are overwhelming, definitely scary, but also amazing.  My jaw hit the floor so many times as I read paragraphs that describe these sweet kids.  I felt like they were writing and describing Zachary EXACTLY!  Even his little fun quirks like how he likes to wave his hands in front of his face and giggles.  Or the way he only plays with toys that make music and has an uncanny sense of rhythm.  Or his sense of humor in how he tries to make us laugh with his funny faces.  That’s Lowe’s.  Oh how it feels good to know. 

The crazy facts in how rare it is are incredible.  Sorry, but that just tells me how special my sweet boy is and that you didn’t get one like him too! J

The difficult conversation I had with my oldest child last night made my heart hurt.  Throughout the past 2 ½ years of wondering, my 3 kids haven’t thought much of it at all.  Friends would ask how my other kids are and I truly answered that they were fine.  I think more than anything they’ve been just oblivious and not understanding how delayed Zachary is.  But now that we know a name and our coffee table books include one with pictures of Lowe’s kids on the front I saw the fear and heard for the first time last night how scary this is for our kids.  Scary at least for my 13 yr. old who now suddenly “gets it.”  He asked questions like “what will he look like?” “Will he grow up weird and with no friends? I don’t want him to hate himself.” And you ready for tears? Travis asked, “What if he can’t understand Salvation?  Will Zachary go to heaven?”  I don’t have all the answers Travis was looking for, but I let him cry and think I answered him the best I could.  This is a “day at a time” kind of journey.  It does us no good to look ahead and fear.  It does us no good to worry. 

Amidst the crazy emotions I’ve had, I had forgotten.  I’m not walking this alone.  This is a family journey and we are all in this.  All 6 of us.  Ups and downs, fears and fun times, we’re doing this together.  And I hope I don’t forget again that young fearful hearts are involved.  I will confidently say again and again that we are all going to be better because of what we are about to walk.  But I’m sure staying on my knees in prayer for wisdom with the hard questions! 


  1. So well said. Thank you for sharing your journey. Be blessed as you are a blessing to others.

  2. This bring tears in my eyes.... Jessica, I am thankful that your children and they hearts for Zachary. Praying God will give you all strength and love for each other to go through this journey.

  3. Oh Jess... I am praying for all of you. (hugs)
    Love your perspective. Thank you for sharing your journey.

  4. Catching up on your last two posts as I wait and pray for Matt as he is at the ER.

    Life is so full of ups and downs, huh?! But we are very glad, relieved, blessed, .... to have a God who loves us and has amazing plans for us (even ones we wouldn't have planned). Love you