This week we played the game. It sounds like cynical wording but seems to be the only real way to sum up a side of the special needs world that I didn’t know about before having children.
The hours of phone calls and phone tag with nurses, doctors, and pharmacists. The boys are now requiring three separate pharmacies for medications and coordinating all of the refills and recent prescription changes has been more challenging than I had hoped.
With typical children you go to the doctor when they are sick or need an annual physical. But when you have medically complex children you rotate seeing specialists every 3, 6, 9, or 12 months and that is if everything is going well. They are extremely routine appointments where you just touch base and make sure that everyone is on the same page and doing well. When you have TWO medically complex kids it leads to a lot of these ordinary, relatively unnecessary (were it not for protocol) appointments. Now, I completely and totally understand why they require them but they can get very cumbersome.
So we float from specialist to specialist and have the same conversations over again, like it is on some odd repeat button. Let me acknowledge that I am SO incredibly thankful that our conversations are boring, as that hasn’t always been the case. I pray that life continues to stay this boring and mundane!
In addition to seeing several specialists this week for each boy we also went for a fitting for Malachi’s wheelchair and an ultrasound on kidneys, spleen, liver, etc take make sure there isn’t anything specific causing him pain at night. I haven’t heard anything from the doctor which I like to believe is a good sign.
Levi still struggles tremendously with medical PTSD and requires major mental preparation before each appointment day. Even then, the anxiety grabs ahold of him and he was very stressed about Malachi’s ultrasound. I snapped this sweet photo and it made my heart swell. Levi was holding Malachi’s hand, but more to reassure himself than anything. And Malachi was his sweet self, enjoying the special attention.
As I watched their interaction at the appointment I couldn’t help but flash back to our pregnancy announcement from 2017.
Levi has become the most amazing sidekick to Malachi, and seeing how Malachi can help calm Levi’s fears reminds me of how much their relationship is mutually beneficial. In fact, I truly feel with all of my being that anyone that has a friendship with Malachi walks away seeing mutual value in the relationship. Malachi isn’t just a “taker” but is in fact quite a “giver” of such special gifts. He continues to bless others in intangible ways and give us a glimpse of the joy the Bible talks so often about.
Speaking of sidekicks, this weekend we will bring home one of our puppies. We are transitioning them to our home one at a time to help them get settled and trained in our environment. This week during our training session Malachi got to “walk” the dogs, training them where to stand when being tied to his chair.
The timing couldn’t be more fitting as our bears are officially back! One of the benefits to staying up so late at night is catching them in the act of messing with our things. This short and very chubby bear stopped by for a visit- I went on the back deck and yelled at him, but he was clearly not intimidated as he slowly walked toward the tree line.
We spent the majority of our free time outside this week working on a fundraising project for our youth group. The boys loved the playground time and the fresh air.
I received my second Covid vaccine this week, and the process stressed Levi out tremendously. He is leery of anyone in medical gear approaching our car thanks to some previous Covid tests. I plopped him in the front seat with me while we waiting in the line, and it distracted him enough to keep him from full panic mode. I did have some side effects from the second shot if anyone is curious. I had a slight rash at the injection site, some pretty frequent heart palpitations for 3 days, and a few random times of my hands going numb. The day after the injection I was pretty useless, exhausted completely and trying to simply keep the kids alive. But that exhaustion and achy feeling went away after 24 hours.
We are still dealing with some major sensory issues with Levi, and while he is making huge oral motor improvements he still struggles with eating and sensitivity. Since he didn’t get the chance to eat by mouth until later in life he is very easily triggered when things go into his mouth. It has made brushing his teeth quite a challenge so I have been working with his feeding therapist to be able to get him to a point where we can brush his teeth without major fighting and gagging. He is still distrustful of someone else holding the toothbrush but absolutely loves sucking the toothpaste off when he gets a turn.
Confession of a Special Needs Mother: I live with a daily fear that Malachi’s death will be my fault. And the idea of living with that guilt makes me queasy.
Much like a newborn, Malachi lacks the ability to get himself out of dangerous situations. In a single day I save his life at least a half dozen times. With his lack of body control he gets himself into positions where he is unable to breathe. In the bed he turns his head so far and arches in a way that his mouth is stuck up against the mattress requiring me to re-position him. In the car seat he has recently started turning his head to the far right and getting stuck with his mouth against the side of the headrest in the seat. When he has a seizure he tenses so hard one direction that anything next to him becomes a threat to his safe breathing.
Saving him in these moments has become so second nature, as it should be. It is one of those things that I don’t realize I even do anymore, like an instinct, and they no longer rattle me like they used to. But it is because of this that Malachi rarely leaves my side and eyesight. There have been so many close calls when I hear a faint muffled breathing and find him yet again smothering himself unintentionally. At night I sleep within inches of his face so when his head moves it hits mine and I wake up and can reposition him.
But I always worry about “that one time”. That one time I won’t hear the muffled breathing, or that one time that I am in such a deep sleep that Malachi’s movement goes undetected. That one time that I left him with someone that didn’t know to watch him so closely. And the fear of having the acknowledge that his death is something I could have prevented eats at me.
While I acknowledge that fear of imaginary death situations seems so irrational and odd it still consumes my thoughts often.
But this is where I find my faith needing to kick into high gear. If I believe that God is the creator and taker of life, I have to continue to believe fully in His providence and His timeline. Regardless of the circumstances surrounding Malachi’s death, I choose to believe that God will not take Him from this earth before his divinely appointed time.
And while I know this and it brings me comfort, I still circle back to the same exact irrational thinking.
When I reflectively look at my fear in this, I take it a bit further and recognize how hard it is for me to offer grace to others and truthfully to myself. God has modeled what a beautiful and free gift grace is, but for some reason I continue to use it sparingly.
It almost seems as though I have accidentally and unintentionally started to take ownership of grace when in fact it should be a reflection of the Father’s grace that we are offering.
In 2 Corinthians 12 there is a chunk of scripture that has sprouted roots in my heart over the years. If you get time I encourage you to read 2 Corinthians 12:7-10 and ask God to show you what He wants you to grasp from it.
But there is one verse in there that my mind has been focused on: “But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses so that Christ’s power may rest on me.” (Verse 9)
His grace is sufficient for us.
Our grace will never be enough. It is too polluted with ulterior motives and attempts to control. It is His pure and beautiful grace that sustains and covers us in our darkest moments.
Here I am worried about a lack of grace from others and a lack of grace from myself in the darkest strands of my imagination of moments with Malachi. But God is clear that His grace is the only one we need to be concerned about. And if those dark moments ever become a reality, I am to rest in the fact that His grace is sufficient.
His grace is always sufficient.
While I am sure that not many of you can relate with the idea of having to rescue your child from death on a daily basis, there are other areas of your life that you have learned to fear. There are the dark crevices we don’t discuss with others that plant a garden of fear in our hearts and minds that we continue to till and try to harvest from. But the crops of those fields lead to death.
My prayer this week is that we are all able to rest in the knowledge that His grace is sufficient. Grace is built on the premise of us making mistakes and oversights. We were never meant to live sinless, flawless lives. We were meant to have moments of weakness that throw us into the hands of God.
His grace is always sufficient.