Awareness

My oh my what an exciting week we have had. First let’s start with some medical updates…Malachi somehow managed to avoid my sickness! This in of itself is a big deal as his immune system is still so poor.

Malachi had 9 appointments this week so we were on the go nearly every day. Tuesday was our busiest day as we headed to the hospital to meet with his neurologist/epileptologist for a routine checkup. Malachi’s seizures lately have been down to only two a day, and those are relatively small! We are thrilled with how stable he has been!

While the appointment part went well, my mood had soured as we had been forgotten in the waiting room yet again. It takes a lot to offend me, but this gets me every time! By the time we were taken back to see the doctor I realized that there was no way we were going to make our next appointment across town. We have to plan our day hour by hour to work around medications, feeds, and appointment times. One snafu in the plans sends our whole day out of whack!

I loaded him into the car, hopeful that maybe we could avoid being more than 30 minutes late. As I sped across town I looked in my rear view mirror to see Malachi licking his car seat. Yes, you read that right. And as I did the math in my head I realized that due to the delay he was already an hour past his mealtime. I took a deep breath and decided that feeding him was priority number one.

While we are working very hard to get Malachi on table foods, his primary nutrition is still smoothies in a bottle. Feeding him is still very much an a rigorous process that requires a semi-comfy chair and environment. If it is nice out, we find a Cracker Barrel and feed him on the front porch. Unfortunately the day was a little chilly so we settled for the first decent fast food place we could find…Chick-Fil-A.

As a special needs mom, you desperately cling to places that help make your outing a bit easier. Publix grocery store pushes your cart out for you and loads the groceries into your car! Places like Chick-Fil-A will carry my tray to my table for me. When you have two hands on a wheelchair, this is exceptional. As we found a quiet corner to settle into I experienced the same thing that happens every time we enter someplace new…the staring. But this time was a little different as it was accompanied by the voice of a young boy.

This week I wrote a Facebook post about it, and I think it will best summarize the encounter:

To the mom of three at Chick-Fil-A: I sensed your panic when your five year old son pointed at my son in his wheelchair and shouted “Mom look at THAT boy!” You leaned forward and quietly told him and his three year old brother that we don’t say things like that and they shouldn’t point or stare. But as in most cases, these suggestions are futile with young, curious minds and they continued to stare and loudly ask questions about my son’s differences. When you realized your whispers weren’t working I saw the panic disappear and you took a deep breath and took a step of courage. You brought your boys over to Malachi and said “I bet he would like to know your names!”. As they said their names my little Malachi started grinning from ear to ear and jabbering back to them. The joy on his face brought tears to my eyes- he loves kids his age but so many are fearful to come and speak to him. Your boys continued to ask questions about his foot braces, his wheelchair, why his legs don’t work, why he holds his mouth open like that. You took the time to educate your sons in that moment and help them understand that different is okay. Different is not something to fear. And that it was okay to ask questions! Thank you for giving my son a chance to meet your kids. Thank you for being the type of mom who educates your children instead of frantically trying to silence them. Special needs moms have to develop tough skin- we get used to stares, comments, and whispers. Please know it takes a lot to offend us, particularly when the comments are coming from young children. Give your kids the same grace we give them and use the opportunity to teach them about differences. So Chick-Fil-A mom, thank you for raising your children to embrace children like Malachi. And thank you for giving my son something to smile about.

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These sweet boys walked right up to Malachi and looked at him as they said their names. This is such a rare thing- so many times when people come to talk to Malachi they bypass him and talk to me, assuming that he won’t understand them. Malachi’s little face lit up with joy as they spoke, and I felt my heart warm. I didn’t get the mother’s name, and to be completely honest I didn’t even get a good look at her face as I was doing everything I could to keep the tears in my eyes from falling.

The conversation was as cute as could be. The boys told Malachi how old they were and seemed to elated that he was in between their ages! They asked several questions about his legs and his fancy wheels, which I did my best to answer. It really was a touching few minutes and Malachi continued to listen to them talk from a few feet away for the remainder of the meal. He was captivated by his new buddies.

The mom was one of the most caring individuals I have ever encountered. She had her hands full with three small children 5 and under, yet she came by to ask if I needed help with anything, or if she could get anything for me. Her kindness was too much for my heart and my emotions almost tipped me over the edge into a sobbing mess.

We finished our meals and headed out the door. I continued to ponder the situation and came home and told Jake about what happened. Thursday morning I was thinking back on the encounter, and wishing that I had had the words to thank this mother in person and tell her how much I admired the way she handled things.

On a whim, I opened Facebook and typed up my post. I never dreamed it would reach her, but thought that I could express my feelings to my Facebook friends to encourage them to do the same when they encounter children like Malachi. Never in my wildest dreams did I imagine it would be received so well by so many people around the world.

We continued on with our day and as I checked Facebook later I noticed that several of my friends had asked if they could “share” or put the post on their wall.

As of this post it has been “liked” almost 180,000 times and shared to over 50,000 walls. The post has been talked about on the radio, submitted to the Ellen show, picked up by a New York group called “Love What Matters”, and we have received thousands of personal messages.

My first reaction was panic! Jake and I are not spotlight people. We don’t crave to be famous or known. We just want to live our simple life with our sweet boy. And now I was being messaged by thousands of strangers.

And while I would love to tell you that everyone’s reaction was positive, there are always a few bad apples in the bunch. Luckily I have the ability to delete negative comments, and did so several times this weekend.

But as I read through some of these messages my heart was touched. There were so many other special needs moms who explained how they needed to hear this story. There were women writing explaining how reading through Malachi’s stories on Facebook had brought them closer to God. There were NICU nurse practitioners and doctors sharing with me that seeing Malachi and his story gave them so much perspective that they hadn’t considered before. There were moms in hospitals with their recently diagnosed children telling me that Malachi’s story was giving them hope for their children’s future.

My heart began to burst with each and every positive message. And I am in complete awe at the way God has used Malachi to teach a lesson about kindness.

This week I had the opportunity to share Malachi’s story with a group of women at a local church. As I pulled out my notes from the last time I shared his story, I focused in on a section in which I had talked about how our prayers for Malachi have changed so much over the last four years. In the NICU our prayers were for a complete and total healing. While we continue that prayer now, we have edited it a bit and added in that in the meantime God will use Malachi to bring people closer to Him.

So as much as I cringe at the thought of our privacy having disappeared slightly, I have to rejoice and give thanks to God that He is answering our prayers. As people visit our Facebook page they are seeing so many posts that quote scripture and talk about God’s presence in Malachi’s life. If even one person comes to know Christ through that post then it was completely worthwhile.

By the way, the Chick-Fil-A mom did find the post! Her husband saw it on a friend’s page and after reading it realized it sounded oddly familiar to the story his wife had told him a few days back about a boy and his mom at the Chick-Fil-A. We have been in contact, and she is as blown away as I am!

We are also planning another Chick-Fil-A playdate in the future.

Malachi’s sleeping schedule is still pretty wacky these days. We were up a few nights ago and I was telling him about all the nice things people were saying about his picture online. How they loved his bowtie and how “dapper” he looked. The more we talked the more tickled Malachi got and he couldn’t stop giggling. I pulled out my camera and managed to catch his sweet voice saying “I love them” (a new phrase for him!), “hi”, and “bye”. We were absolutely thrilled!

Here is the clip:

 

I am guessing all this Facebook chaos will slow down over the next few days and life will return back to normal for us, which we will welcome. These last few days have blessed me as I have had so many people reminding me of honored we are to have such a sweet and loving boy. And they are absolutely right! Malachi’s heart is pure. He loves unconditionally, and looks for joy in every situation. He brings us so much happiness, and getting to share him with others has been a blessing.

One final thought before I go…

Philippians 4:8  “Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.”

When we focus on the things that are worthy of praise, there is not room for negativity! May we always choose to live a life of contentment, looking for things that are worthy of praise.

God bless,

Jake, Leah, and Malachi

 

 

3 thoughts on “Awareness

  1. Your family has been an inspiration to me. Not just your days of joy when their has been breakthroughs in Malachi’s progress, but how you face insurmountable task, day after day, and with human resources and God’s help you maintain a live with family, friends, church, work, play and never give up. You experience life as well all do, but you shine brightly, as a beacon in a dark word. There has been dark days as not only I face live without Al, but he’s not beside me fighting for the custody of Emma. She cannot be who God wants her to be in the godless and hostile environment she’s forced to live in. But God will do what’s best for His child, I know.

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    • Linda, my heart aches for you. Not a day goes by that we don’t talk about Al in our home. What a legacy he has left behind. We will be praying specifically for your situation with Emma. Praise the Lord for His providence and no matter the outcome His will prevails!

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  2. I am about crying tears of happiness because I was thinking – – before I saw you had written it – – that others would come closer to Jesus because of your blog posts! Your family has been chosen for a hard time physically and emotionally many days but it thrills me to hear you tell how you have encountered God’s love and encouragement and MIRACLES along the journey. You all are precious and it is a blessing to know you! Also, you don’t realize how you have been “iron sharpening iron” to me at times – – – convicting me to continue to go deeper in my faith and not rest in what I have gained all these years. Thank you!

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