Today is Mother’s Day, a special day that I always seem to have such a hard time with! Truth be told, most days I feel like I wear so many hats, and the “mother” hat doesn’t strike me as the most frequent one that I have to put on…
Bodyguard Malachi is still a medically fragile child. He doesn’t have the muscle strength needed to get out of dangerous situations, and tends to put himself in those dangerous situations with his frequent seizures (we are down to 3-4 a day). Because of this Malachi must be watched 24 hours a day 7 days a week. Even when he is sleeping we keep a camera monitor zoomed in on his face and body to watch for seizure activity.
Fecal Matter Detective Malachi’s brain is also still his own worst enemy as it doesn’t communicate with the many working parts of his body. While there are obvious ones like his body tone and head control issues, there are also ones you may not think about, like his intestines. His brain is not communicating well with his gut and so it doesn’t accurately alert him when he needs to empty his bowels. Because of this, we have to highly monitor his bowel movements and assist frequently (yup…it is as gross as it sounds haha). Constipation leads to even more seizures so we can’t allow that to happen.
Nurse Malachi is on a strict medication schedule throughout the day which we have whittled down to just six doses a day; at one point we were at 32 so we are thrilled! We are also on guard for aspiration when he eats and making sure that we have rescue medication on hand in case of a severe epileptic episode.
Teacher Malachi is a very smart little boy, but does require repetitive teaching and an insane amount of patience. His response time to commands has improved by leaps and bounds over the last few months. This progress depends largely on how much time I am able to work with him on a new concept. So truthfully this is one of the most overwhelming roles I find myself in because I never feel like I am teaching enough.
Therapist Yes, Malachi is involved in several therapies throughout the week, but those activities that he does there are meant to be repeated daily at home. If we are being completely honest here I will admit that I am not good at this one. There never seems to be enough time in the day to accomplish all that needs to be done, and when I see his tone worsen it sends guilt pangs through me, wondering if I could have prevented this by stretching him more.
And then there is the role of Mom
While I do not get to simply be mom much of the time, there are so many glimpses throughout our day where I think “This is how it is supposed to be.” Those moments where I get to relax and smile about something silly Malachi did bring me so much joy and happiness. Unfortunately all the other roles tend to take over in those moment, wondering if that yell of joy I heard in the car was truly happiness or the end of another seizure that I didn’t see.
Last night I crawled into bed with Malachi (not our typical routine, but more on that in a minute). He was sleeping so soundly and his little chubby hand was just begging to be held. I held that little hand and watched him peacefully sleep and I just started uncontrollably crying tears of joy.
This is how it is supposed to be. A day full of these little moments that imprint themselves onto your heart. These stress free and wonderful snapshots of a boy who is moving mountains but still needs those moments of rest.
As I looked at Malachi I was tempted in my heart to go there….to go to the dark pity side of special needs parenting. Let me tell you, it is a daily field trip that begs to be taken. It is a daily struggle to push those thoughts out of my mind.
So I took a mind-clearing breath and my pity turned into pride. This is MY boy. Challenges and all. And whether he means to or not, he is changing my world…our world…for the better with every challenge he overcomes.
What an honor it is to be Malachi’s mother. Every child is special, and it would be ignorant of me to think my child is more important or special than yours. I hope that each of you mothers can feel what an honor it is to be given such wonderful children.
Life has gotten a little chaotic for our little trio this week. We found out last week about some health needs of a family member that required us traveling to Ohio. Jake’s schedule wouldn’t allow him leaving right away, but Malachi and I were able to move some appointments around and leave on Thursday morning. I have attempted trips to Vanderbilt alone with Malachi but those were 3 hours there and 3 hours home. Ohio is a 6 hour drive each way and Malachi has a history of not enjoying the trip (and being vocal about it).
Jake was able to join us for the weekend but had to return earlier this afternoon. “Single momming” it with Malachi is a challenge, and the bigger he gets the more difficult it becomes. My father very graciously gave up his master bedroom on the first floor so I could avoid going up and down the stairs with my 40 pound little chunky monkey. Malachi is thoroughly enjoying getting to be in the bed with mommy each night and loves wiggling over to be face to face with me. Sweet little boy.
I can’t even begin to describe to you how much has happened over the past week in regards to our Facebook post. What was meant as a simple thank you to a mom I didn’t know has managed to pique the interest of thousands of people all over the world. If you want to see what I am talking about take a second and google “chick fil a mom special needs”. Unbelievable.
Our story was talked about on several radio stations throughout the country, including CNN radio. Articles about our Chick-Fil-A encounter were posted on the people.com website, Fox news website, ABC affiliates, and literally hundreds of other websites. I started getting thousands (not exaggerating) personal messages from people all over the world. We were contacted and/or interviewed via email by over 25 news reporters…United Kingdom, Argentina, Australia, Belgium, the Netherlands, and my personal favorite…ISRAEL. Yes, our story made the news in Israel.
Now let’s have a moment of honesty here. The post wasn’t THAT good. There is nothing in that post that should have made it go viral. It took me two minutes to type and post. So what in the world is happening?
My only conclusion is that God is working in some pretty mysterious ways.
If you are new to the blog you need to know that I am a Christian. I believe with all of my soul that God is very real and is at work in my life.
When Malachi was born I remember praying to God one night, begging that He spare Malachi’s life. I remember saying to God: “If you allow Him to live, I will share his story with anyone who will listen and tell them about the great things you have done in his life.” Our prayer for Malachi is that God will use him to bring others into a closer relationship with God.
As I read my viral Facebook post last week I was so disappointed in myself. I try to point to God in almost every Malachi post I write on Facebook- because God is the only one who should get the glory for the great things happening in Malachi’s life. And the one time I didn’t mention God it spread like wild fire.
As I prayed about this and expressed this to God I suddenly realized that maybe God was using this story to plant seeds…seeds that would not have been gladly distributed by the media had it mentioned Christ.
This feeling was affirmed when I read the Fox news article. Guess what source it cited and linked to the article? THIS BLOG.
One of my prayers for this blog is that others will be encouraged in their faith through Malachi’s story. In just three days the blog had nearly 15,000 hits. And if just one person read or saw something that pricked their spirit then praise be to God.
So as I have processed this week I am reminded of this scripture from Isaiah 55:8-9:
“For My thoughts are not your thoughts, nor are your ways My ways,” declares the Lord. For as the heavens are higher than the earth,so are My ways higher than your ways and My thoughts than your thoughts.”
While I would love to take credit for my viral post, I think that I had very little to do with its popularity. And I am so incredibly content with simply being a mouthpiece for God. May He continually use his precious little Malachi to remind our world of His power.
On a very human side note- I have been blessed tremendously this week with an outpouring of support from strangers. As I read message after message of love from people whom I had never met, I felt strengthened and encouraged in this tough walk. God has used many of you this week to breath some life back into my mothering. Thank you.
I had so many other things I wanted to share, but it is getting close to midnight and this temporary “single momma” is eyeing a spot next to a sweet sleeping boy.
Thank you for continuing to join us in prayer for Malachi. This journey is a tough one, but knowing I have people willing to join me on it brings me joy.
God bless you,
Jake, Leah, and Malachi
P.S. If you are new to the blog you also need to know that I type without editing, as my mind is usually mush by late Sunday night haha. Please forgive any poor wording or nonsense!