This week I have been thinking long and hard about the blog and how it has changed over the last 8 years. When I go back and read the entries from Malachi’s birth I see such transparency and openness. But when I read current ones I can see and hear my hesitations in what I write. That change happened without me intentionally doing it, and it has got me really thinking about the purpose of the blog.
My number one purpose in the blog has always been to point people toward Jesus. I am not confident that each entry has done that, but that is always on the forefront of my brain when I sit down to write each week.
Another purpose is showing you the joy that special needs families have. When you choose contentment, even the hardest moments can breed joy.
Another purpose is awareness. I want to help educate the world on how to treat children with special needs. I also want to share as many medical terms and diagnoses as possible on the chance that other parents are just starting their medical journeys and need some support!
Another purpose I started focusing on several years into our journey with Malachi is always being honest, even about the hard things. This is the one that I seem to be having the most trouble with. When I post hard moments and hard emotions I have found that people treat me differently. I get eyes of pity and lots of “How are you doing today? I know it has been a hard week.” And while those comments come from a kind place they do more damage than good for my heart. I spend more energy than I should keeping my emotions in check and avoiding breakdowns throughout the hard days, and the looks of pity inch me closer to the floodgates and pity parties.
It has simply become easier to smile and nod. When people ask “How are the boys?” It is much easier to say “They’re doing great” then to spend time telling them about the 4 minute seizure Malachi just had or the g-tube scare with Levi. And I have come to recognize that most people want the response to be “They’re doing great” as it makes them less uncomfortable than the alternative.
And finally, I have been more reserved writing lately for fear of judgment. Covid and its social complexities seems to have empowered many people to want to educate others, myself included. One of the most hurtful things is when people question my parenting decisions or choices with the boys, so it has been easier to keep the details of our life quiet to avoid judgment. After a few personal messages from readers I clamped down on our privacy a bit.
But in doing so I have strayed far from what this blog was meant to be.
All of that to say, I am going to work hard to write without reservation, still allowing myself to be guided by God. There may be weeks that I post the ugly side of our special needs world, and I am asking that you allow me to do so and respect this special bubble that I put those thoughts in.
Oh boy, what a long intro that turned out to be!
Jake was off this week for his spring break and we had the most pleasant week together. The boys were so happy to have him home, and I needed the respite more than I realized. We are able to get into a groove with caretaking when he is home and each get the chance to catch up on much needed sleep. Even the small things, like Jake taking a medication session with the boys is a special treat. The monotony of our schedule can mentally get to me some times. And with the time change added in, getting the boys into a feasible routine for meds has been difficult.
We spent pretty much every day outside in the sunshine. This time of year is our prime time for Malachi to be outside since the temperatures are still tolerable. When summer temps hit he shuts down outside.
We do have a special announcement we have been keeping under wraps for a few weeks, although we have hinted at it several times. In May we will be bringing home two black Labrador puppies, Tuck and Shiloh. In true God fashion we were given a very special opportunity to get these two special dogs for Malachi and Levi. They are 11 weeks old now, and are being fully trained before they join our home.
We visit them often and get educated on how to command and we have been absolutely astounded by how well trained they already are with basic things like potty training, gentle, and simple commands. They will not be “mobility assistance trained” but we intend to continue to pursue that route once they get a bit older. The trainer is working with them now on basic things but will also be implementing some special skills in there. Our end goal would be that they could re-position Malachi’s head specifically when he has a seizure and cuts off his air supply with his head turn. This has been happening a lot more recently so we are always on alert and keep him in our sight 24/7.
Malachi chose the names for the dogs using his yes/no signs and worked it down from a list of 9 to Tuck and Shiloh. He was VERY firm on the name Shiloh and oddly enough that is the one that seems to have attached himself to Malachi; he is the one closest to the camera. He is a big, lazy puppy that loves to snuggle…perfect for Malachi. Tuck is a bit more adventurous but very well mannered and intelligent.
Here is a video that will let you see their patience training:
We are all very excited about the puppies and they are a daily topic of conversation. Jake and I each had black labs growing up and have been waiting for the right time to add dogs back into our mix.
We had a super special treat this week and got an invitation to an egg hunt with some amazing people. Throughout our medical journeys we have connected with hundreds of nurses, therapists, doctors, and various medical providers. With both of the boys having complexities we have become “frequent flyers” at our local children’s hospital and tend to be remembered (I think that is a good thing haha?) We have favorite anesthesiologists, x-ray techs, emergency rooms doctors, respiratory therapists, and nurses. We even used to have a favorite parking attendant and would bring her candy on the days we knew she was working.
During those long ICU stays the only company I had was medical staff, and I was able to form bonds with many of them. It was these special people that cared about keeping my son alive as much as I did, and I have always admired their hearts and dedication to such a challenging career full of ups and downs. They are also the only ones that truly understood the battles we were facing. Many of them have stayed connected after we were discharged and have become special friends to me.
One of those friends invited us over for an egg hunt this week with several NICU nurses and respiratory therapists. I giggled a bit at the irony of being such a regular that we get to party with them on their days off too haha, but in all honesty the day meant so much to Jake and I. These people saw/see us at our absolute worst and the love they have for my boys is something too unique to put into words.
One of my blog rules is that I try hard to respect the privacy of the people we spend time with, but I don’t think he would mind…
This is our favorite respiratory therapist, Ryan. He is almost always in the Emergency Room when we have had late night emergencies and Malachi knows his voice well. He always speaks to Malachi in a way that acknowledges his understanding, and that always goes a long way with Malachi (and mom too). I zoomed in on this photo because it touched my heart so much. You can see Malachi sneaking a glance at Ryan, who is not often in Malachi’s tiny range of vision and the smile on his face says it all.
Levi was way more interested in the babies than the egg hunt.
But Malachi was pumped about the giant chocolate bunny!
I get a lot of social anxiety when we take the boys somewhere. There are so many variables I can’t control and let’s be honest…my kids are quirky. Levi still can’t eat most things but loves to pop food into his mouth, chew it up, then spit it out. Sometimes he is polite and puts it in a napkin, sometimes he isn’t as discreet. He still chokes often on food and when that happens he projectile vomits. I keep a towel in the back of Malachi’s wheelchair when we are going to be inside a building but if we are outside I always am mentally choosing a spot to aim him like a super soaker should the need arise.
Malachi is very unpredictable in unknown environments. Sometimes the extra stimuli sparks his seizures, which we don’t like to draw attention to. But when he has seizures he looses his bowel control and will also pee extremely hard which the diaper can’t always keep up with. Changing him in public is also getting very difficult. Malachi is also cognitively very aware these days, and knows when he isn’t being included. He gets his feelings hurt often and starts crying…like BIG time, crocodile tears. It breaks out hearts when it happens. We have been trying to prepare him for things a bit more, explaining to him that there will be kids doing certain things that he won’t get to do and we can come up with some pretty lame excuses as to why he can’t do them. Like how he is the oldest kid there and ”they are only letting the little kids play over there“. Or we tell him how boring something is, and distract him with something fun we will get to do when we get home. But I worry about the day that those stories will no longer work.
Public outings require a lot of preparation physically and mentally for our crew. But they are also so important in so many ways! So we just have to find ways to make it work. Our egg hunt outing went great with zero seizures and vomits. Levi kept kissing the tops of the other kid’s heads but other than that we weren’t too weird.
I have been reading another blog that has been doing a series of posts called: Confessions of a Special Needs Mom
When I read them it feels like my heart is high-fiving the author. The struggles she talks about are so relatable to me.
I want to start having some of those conversations in these entries but do so with a disclaimer. These are intended to educate and bring awareness to a world that you may not fully understand. I am not writing these for sympathy or self-glorification.
Confession of a Special Needs Mom: I have lost my identity against my will.
I didn’t realize that this could ever actually happen. I always thought it was so crazy that someone could “lose” an idea of who they are.
When I was thrust into the special needs world at Malachi’s birth I still clung to pieces of my pre-mother identity. I had hobbies and goals. I enjoyed doing trivial and meaningless things, like watching Jeopardy and reading an occasional book. I thoroughly enjoyed working out, coaching soccer, and hiking up mountains. Going out with friends sounded like something fun to do, and shopping was an activity that took several hours mostly spent wandering around stores and looking at things for the sake of it.
When Levi was born I spent those first few months in ICU land and those tiny fragments I had clung to disappeared. I came home from Cincinnati and the things that I once loved now seem so time consuming, pointless, and so far down on the list of priorities that I have mentally let them go. While some may say that is sounds like depression, I truly don’t think that is what I am dealing with on this one. It is simply the inability to give of myself to anything or anyone other than my children.
A few weeks ago someone sent me a link to an Enneagram test and for fun I clicked through it one night.
Here are some of the questions:
“I think a lot about what will happen in the future”
”I am a natural caretaker”
“Average people often find me a bit weird”
“I often feel like an outsider”
“I am always up for a new adventure”
“I enjoy caring for others and their needs”
As I clicked through the questions I caught myself pausing, trying to decide if I needed to answer with my natural inclination or my reality. The answers that I would choose differ greatly now that I am a special needs mom.
There are not many things that come naturally to special needs mothers. Watching seizures, changing g-tubes, seeing daily suffering…these are not things that come naturally to me. But they are things I have to accept and learn to become “natural” at.
When you become a special needs mom you are required to trade pieces of your identity for pieces you would never voluntarily pick from a list. There are days that I resent that. The lack of choice and control I have over my own life is hard for me some days. I resent that when I do get a free hour all I want to do is sleep, trying to catch up from countless nights of insufficient rest. I resent that I can’t work out and look like I want to, can’t coach soccer like I used to, can’t wander around TJ Max aimlessly looking at cute clothes I might wear on my next girl’s night out. That is a life I an longer living.
But then I remember that I am not put on this earth to be the person I want to be. I am here to be the person God is calling me to be.
Ephesians 2:10 “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”
A huge part of walking with Christ is surrendering to His will for our lives, trusting that He knows us a whole lot more than we know ourselves. Read that verse again.
I am not completely convinced that clinging to my “identity” is God approved. It sounds a whole lot more like the world to my ears. The world convinces us that we deserve ______ and we earned ________. But that’s not how a life with God in charge looks.
Life with God is acknowledging that we have been chosen by God, our Creator, for very specific tasks for our time on earth.
Oh, how ashamed I am to see how my mind has selfishly turned these God given tasks into chores.
When our identity is rooted in Christ it cannot ever be lost, as it is not ours to lose.
I feel like typing all that out was therapeutic for me haha. Maybe tonight’s leading from God was for my heart and not yours. Or maybe He knew we all needed a reminder that we can’t pretend to be a silver spoon when the Creator designed us to be a salt shaker.
May we all be challenged this week to allow God to shape our identity instead of our own ideals.
P.S. I had to laugh last week at the amount of typos and errors in the entry I posted, especially adding a j to my name. We have been having technical issues and I am typing them on Malachi’s iPad, clearly something I have not mastered. I thought about blaming Levi, but that just didn’t feel right.