This past week was a rare one as ALL of Malachi’s therapies and appointment were cancelled for spring break. Aside from Malachi’s music class on Tuesday we had no other pressing commitments in Malachi land, and what a refreshing feeling that was!
Years ago when I envisioned being a mom I thought about all the fun activities I would plan for my little crew (which was going to consist of four boys haha). We would not be a stay-in-the-house type family, but rather we would stay busy with impromptu hikes, splashing in the creek, play dates with buddies, and lots of fun! I had planned on being supermom.
Never in that vision did I imagine that my son would not be able to hike. I never imagined that play dates would cause painful pangs of jealousy in me as I watched children do things that my son would never be able to do. Never did I thinkthat I would need a large whiteboard calendar on the wall to keep track of medical appointments…a list that literally never “ends”. At the end of every appointment a new one is scheduled so the list never shrinks.
So when a week like this one rolls around I find myself a little lost as to how to fill the free time. By the time Wednesday rolled around we were absolutely loving the freedom and I was able to be the “awesome special needs mom” that I really want to be.
What does that term “awesome special needs mom” mean, you may ask? It means a mom that does all the homework assignments the therapists and doctors give me weekly to do. Spending time in his medical equipment that helps with weight bearing, taking feeds by mouth, stretches, practicing independent play, working with switches, haircuts, baths, focused teeth brushing…all those weekly activities I usually have to cram in between appointments were able to be tackled. And it felt amazing.
Not only was I able to focus more on Malachi, but I even had a chance to focus on me! Instead of grabbing quick meals on the run I was able to prepare healthy salads for lunch. I even had enough time in our day to run to the local gym with Malachi and run on the treadmill a bit. It sounds silly but I feel like I got a bit of my identity back.
We have a wonderful friend at church that has always cut Malachi’s hair for us for next to nothing, and as you can see in the picture above it was time! Unfortunately our church friend has been incredibly busy so we attempted to try a public place for this go around. I called ahead and asked if anyone working that morning would be comfortable cutting the hair on a special needs kid and explained that he was usually pretty calm during the process. The lady on the phone said “I am sure someone here will do it.” So we headed that way.
As I drove over I found myself getting increasingly anxious about the situation. I wasn’t worried about Malachi’s hair or safety, but more worried about having to expose ourselves to rejection. What if I went in and when they saw Malachi decided that they couldn’t accommodate him? Or what if when I told them about the shunt in his scalp, they got grossed out and said they weren’t comfortable? I kept envisioning all the possible scenarios in which I might be turned away and my heartbeat wouldn’t calm down.
The odd thing is that this is one of the first times this feeling overwhelmed me. Jake and I keep Malachi in a safe bubble world and try not to pursue things that could lead to rejection. We never want Malachi to feel ostracized so if it could lead to that we just pass. But alas his hair was blocking his vision and something needed to be done.
The young girl that cut Malachi’s hair was very kindhearted and cut his hair like a champ. While she was clearly nervous about his shunt and his head control issues, she did not shy away from the task and I was very grateful. Afterwards I felt silly for having such strong emotions, but it reminded me that this is still a relatively new world for us. The older Malachi gets, the more obvious his differences are and we are learning how to live in a world that doesn’t always embrace those differences.
One of our biggest focus point this week was eating table foods. With extra time at home I was able to prepare meals specifically with Malachi in mind, and boy oh boy did we make some progress! Every day this week Malachi ate one significant “meal” with us. He ate chicken casserole, a sweet potato with brown sugar and butter (yay for extra calories), soup, a very mild form of chicken enchiladas, queso cheese, lemon pudding, and lots more!
We are so proud of his eagerness to eat, and when it is something that he really likes he is downright demanding! He will swing his hand to hit my arm so I know he wants more. When it is something that really intrigues him his grow as wide as saucers and he will “baby bird” us by opening his mouth and begging for more.
We are getting more adventurous with textures and consistencies and he is rising to the challenge. LOTS of progress this week!
On Saturday the three of us went to see the high school perform “Beauty and the Beast”. Malachi was so fun to watch during the performance, jumping when the best roared, smiling when the singing started- even singing along to the ones I frequently belt out at home. He had the attention span of a four year old and was ready to roll after an hour, but it was a fun experience with him.
Jake and I filed our taxes this week, and as she typed in our information I spotted the column for employer next to each of our names. Next to Jake’s name read TEACHER and next to mine it said HOMEMAKER. I smiled to myself as I read this, thinking about how we were bold face lying to the IRS.
If you were to require me to list a career right now, homemaker would not come to mind. Our home is a conglomerate of chaos and always tends to smell like poop. When you are carrying a 35 pound toddler with no head and body control, things tend to get set down in places and never fully put away. The “to be ironed” stack grows hilariously large until Jake is down to only swim trunks left in the closet to wear to work and I have to tackle the stack.
So being a Homemaker- someone who manages the home- is definitely far from the truth, but listing “Special Needs Mom” in it’s place wouldn’t quite work either. We will stick with homemaker for now!
This coming week is Jake’s spring break and our busy days are about to start back in full bloom. Tomorrow we start appointments at 9am and finish around 4:30pm but having Jake there to help makes the task feel more manageable. Tuesday we will be meeting with the neurosurgeon to check on his shunt, but I don’t foresee any major issues.
We are tentatively planning a tiny getaway for Thursday and Friday, but I think I will wait to let you in on the fun. But if it works out as planned Malachi will be one happy boy!
As far as a devotional thought this week, I want to borrow someone else’s words to share with you. I took the youth group to a rally this Wednesday and the group that led the music sang a song that I have heard several times before. But as I listened to the words this time I got the chills, thinking about the significance of Jesus’ death on the cross. Here are the lyrics to the song “Forever” by Kari Jobe; I will also post a link to a music video if you feel like learning an amazing new song:
The moon and stars they wept
The morning sun was dead
The Savior of the world was fallen
His body on the cross
His blood poured out for us
The weight of every curse upon Him
One final breathe He gave
As heaven looked away
The Son of God was laid in darkness
A battle in the grave
The war on death was waged
The power of hell forever broken
The ground began to shake
The stone was rolled away
His perfect love could not be overcome
Now death where is your sting
Our resurrected King
Has rendered you defeated
Forever He is glorified
Forever He is lifted high
Forever He is risen
He is alive, He is alive
We sing Hallelujah, we sing Hallelujah
We sing Hallelujah, the Lamb has overcome
As we get closer and closer to Easter Sunday I can’t help but find my mind wandering to the power of Christ’s death. This song uses the phrase “As heaven looked away” and that has captured my attention. I have been wondering what the tone in heaven was that day. I wonder if the earthly sadness of Christ’s death was drowned out by a joyful rejoicing in heaven as the heavenly realm watched God’s perfect plan falling into place….knowing that Christ’s suffering was leading to something so great and magnificent.
What a beautiful love story we have been privileged enough to be a part of. John 3:16 “For God so loved the world that He have His only begotten son, that whosoever believes in Him should not perish but have everlasting life.”
Just something to ponder this week!
Jake, Leah, and Malachi