It’s been a while. I wouldn’t expect you to, but I sure do. One night, 5 years ago last November, we had gotten some yummy Chinese take-out and were sitting in Noah’s room at The Children’s Hospital. As we finished up and started cracking open our fortune cookies, I grabbed one and said, “This one’s for Noah.” If you can see in the picture, that’s medical tape, the kind that used to keep tubes and crap attached to my sweet boy. We used it for other things, as you can see.
At the time I remember thinking, “Oh how great it would be if You would heal Noah, God, and we could go all over the world (a lifetime dream of mine) and tell everyone of Your faithfulness, love and power.” This was my initial response to reading, “You will step on the soil of many countries.”
It’s because I had seen myself with a grown son…remember? And so I naturally thought it was Noah…since he was my only son at the time and all. And Noah did step on the soil of many countries, so to speak, just not physically with his two sweet little feet. His blog hit every continent before he died, but that wasn’t quite what I had been thinking…
Well, fast forward 5 years. This post isn’t about Noah. It’s about how my heart leaps out of my chest every time I see pictures of a sweet mama and her boy, so very much in love, who are on a journey. It’s about how I can’t get them out of my mind, not because I want to, but because God continues to put them on my heart, all throughout the day.
I have mentioned him here before, but I’m asking you not to turn away. I KNOW reading about a kid that is dying is nothing less than gut-wrenching. It’s HARD. It SUCKS. It’s a volume of books filled with descriptive words that can’t really describe the heartache. I freaking GET IT! It’s why hundreds stopped reading my blog after Noah died. I understand. It’s not as fun as Pinterest or Facebook or a hundred million other things.
But I’m literally begging you to let your heart pray for Jarrett, Chelsea, Peyton, Conner and Trek, as they set off on a journey of living life to the fullest, one day at a time.
You see, someone close to them contacted me to pray for them…she had read Noah’s blog and couldn’t stop thinking about some of the similarities.
Here is where my heart is wrecked. We never wanted Noah to be stuck in a hospital bed his whole freaking life. That was never our dream for him…but because of a whole hellofalotta reasons, we were stuck. There were days I dreamed of stealing him out of the hospital and taking him home…but we couldn’t because we didn’t have home health care at the time. It was a big mess. The closest I got to showing him the world was this…whoopdefreakingdo!
Anyway, Chelsea’s heart is living out what I wished I could have done with Noah.
Am I living vicariously through them? Only the freedom part…I lived all the rest already.
Either way, my heart is crying out for them to RUN, PLAY, LAUGH, CRY, REST, STARE, LISTEN, SING, NUGGLE, SMOOCH, HOLD ON and LET GO all at once.
I pray for God’s love to fill every corner of their lives with such fullness that this time in their lives will ever be etched in their hearts.
I hate what they are going through but if I had it to do over, which I don’t wish for, but if I could go back, I’d run like hell out of that hospital and live whatever amount of time I had with my boy, free from the beeps and meds and tubes and tests and pokes and drugs and smells and unknowns.
I don’t despise what we went through, I do have to say, because 5 years later, I’m grateful to at least have the perspective that life is short. It’s time to live, today, right now, to the fullest. Time and the people in our lives are literally gifts from God for our joy.
It’s time you, or someone you know, stop holding back.
Stare at your children.
Laugh your ass off.
Play on the floor with your kids.
Tell your husband you love him.
Tell him you are sorry.
Turn off your freaking television. Hell, throw the damn thing away.
Stop caring what others think of you.
Trust God sees the bigger picture. Relinquish the control you think you need to have.
Live in wonder.
Baby Trek Atlas may not physically touch the soil of many countries in his short life time, but the way he’s living with his big brothers and mommy and daddy who adore him…well, he’s experiencing more love than many do in a lifetime. And, if you spend some time reading his mama’s blog, I would venture to guess he’ll have you looking around, wondering what matters, and making a few changes and tweaks to what is important.
That’s Trek, a 9.5 month old, teaching us a thing or two. That’s him stepping on the soil of many countries…
I just read your story of Noah. Very enlightening. Just wondering if you and your family ever found out what Noah had? Did you ever get answers?
wow! I am Chelsea’s sister, Trek’s auntie, and I am so happy she shared your blog with me. Thank you for your words and for taking the time to share about sweet baby Trek. I am amazed by you after just reading one post and just felt led to say thank you! Thank you for your words that were such a sweet reminder to embrace life! Being Trek’s Auntie I am now forever changed by this sweet angel and my heart breaks more every day for what is happening. Thank you for you encouraging words, they mean more than you know. I admire you for your strength to continue to write about your sweet boy and to be there for other families, wow!
My husband and I went to college with Chelsea and jarred, I saw your blog on her blog. I just wanted to say that I just started at the beginning and read your journey through noahs life time on earth and was so moved by your strength and faith. I have always believed that if trials in my life help at least one person to draw closer to the Lord then they are worth every heartache and tear, to read how this unimaginable heartache became a blessing not only in your walk with the Lord but drew so many thousands of people to his feet…I am astonished at the power of our God and how widespread he reaches.
@jbacohen: Noah never received a formal diagnosis. He had symptoms of a leukodystrophy, but all DNA/lab tests came back negative. We did find borrelia Burgdorferi antigens in his blood and mine. That is a spirochete (organism) linked to Lyme’s disease. I never knew I had it. It was dormant in my body so my body did not make antibodies to fight it off. Once Bb crosses the blood brain barrier it attacks the body in much the same way as Lou Gehrigs.
Amanda, you have some beautiful nephews! And your relationship with your sis reminds me a lot of my own. Please know I am praying for all of you guys as you love each other with all of your hearts! It’s tiring but it’s the way we were intended to live anyway…Thank you for your encouraging words. I know I really know you guys, but you are all in my thoughts and prayers…Aunties, Uncles, brothers, grandparents, cousins…everybody.
Thanks Adrienne for the response. I was in awe reading your posts (stayed up a bit too late) and was left wondering. I am glad you shared your story (and I feel your love for Noah) and I am going to squeeze my little one extra tight.
When I saw her post of them in DL…melt my heart alive!!!! I don’t guess I realized that you got to visit them!!! What a blessing! I can’t recall if you mentioned that on your last blog post about their family or not- but I read on Chelsea’s blog that she got to meet you 🙂
Isn’t in beautiful… the grace and strength that God can pour into your heart when you are facing a storm that you have no idea how to make it through.
Thank you so much for sharing about Trek! You have been such an inspiration to me and how I live my life since I started reading your blog when Noah was in the hospital. I am not even sure I can put it into words how much it changed me.
I am so happy you got to meet Chelsea. Isn’t she amazing? Even more beautiful on the inside than she is on the outside. Thank you again.
I have been reading your blog for five years. I am now reading Trek’s and praying for them all the time. God wakes me often in the midst of the night with his sweet face and his loving family on my heart. It is an honor to pray for those who are in the midst of a valley. I have always loved your blog. Thank you for bringing other who are in need of our prayers to the forefront!
I love you. And I miss you. That is all.