There are weeks that seem to zoom by, acting as one giant day instead of accumulation of seven. This has most definitely been one of those weeks.
Something has been slightly off with Malachi and we have been dealing with some pretty terrible tummy aches at night only. These set off his seizures and I spend most of the evening trying to bring him some relief trying every trick in the book until he passes out, usually between 4-6am. When he has these episodes his heart rate goes up and his breathing changes into a very shallow breathing. He will projectile vomit and this drama causes his body temperature to increase for just a few short minutes. It is like his system is going haywire. During the daytimes he has been his happy, chipper self although he definitely is much more sleepy than normal.
I spoke with his Gastroenterologist this week and we have scheduled an ultrasound to see if there are any obvious spots of concern, like hidden kidney stones or something of that nature. We couldn’t get on the schedule until April 16 so I am hoping whatever the source of pain is for him that we can figure it out between now and then.
When we go through rounds of unknowns like these it takes a toll on all of us. We already don’t get a whole lot of sleep in our house, but running on 2-3 hours a day takes it toll mentally on me. It also is starting to really affect my body physically which is a new challenge to deal with. Without a few hours break each day from holding and maneuvering Malachi my body is yelling at me that it is being overworked. My wrists, back, and neck are so painfully sore from supporting his body, like I have overworked those muscles. The physical nature of caring for Malachi is something I didn’t realize would be so significant at this stage…it worries me about what is to come.
But I also feel so guilty talking about my aches and pains when clearly he is the one truly going through the misery!
We did have some fun this week with friends and family! And Malachi’s mean old front tooth finally popped through this weekend, praise the Lord!
We both have siblings that have also moved to Tennessee and enjoy getting together with them during the holidays. My brother and his family came over to play on Friday and the kids got to do another egg hunt.
We tied balloons to Malachi’s eggs so he could grab them more easily and he loved the adventure.
Levi is a terrible egg hunter, but fun to watch.
The boys each had an appointment this week with GI and we did weight ad height checks. Both of the kids still have a “failure to thrive” diagnosis which seems laughable at this point. Malachi is weighing in at 36 pounds and 3 ft 3in. Levi is 34 pounds and 3ft 1in. They are almost exactly the same weight and height which makes me laugh a bit. But they are both healthy boys and the doctor seemed pleased with their progress.
We spent some time training with our puppies again this week. We will be bringing the first one home on May 1 and the second one home on May 8 and are all very excited! Levi has been fascinated with the training process and likes that he can boss the dogs around.
The boys received a very special gift this week from some of our sweet friends. Levi has been riding it all weekend and Malachi sits up so tall when we help him sit on it! Look at how tall he is getting!!
Today is Easter Sunday and we were so happy to be able to worship together at church. Easter has been a significant holiday in my memories over the last 8 years as we haven’t always been able to attend services together due to hospitalizations. You learn not to take things for granted when there are years you have to do without!
I tried to piece together Easter outfits for us late last night, something I usually look forward to doing but with the lack of sleep I just allowed it move to the bottom of the priority list. I rummaged through a box of hand me downs and we made it work. We don’t do “dress shoes” in our house as there isn’t room for braces and inserts in most of them…and Jesus cares way more about the inside of our hearts than what we wear so we let those ideals go.
Levi grew restless during the service so I took him outside and he got to run around with one of his best friends. They were so sweet together so we snapped some photos.
We are still trying to avoid crowded places, something we did pre-Covid pandemic as well, so after lunch we drove up the river to a local barbecue place for some brisket. It is usually too busy for our comfort level so we get an order to go, but today it was quiet enough for us to take the boys in for a special Easter lunch.
The owners were so incredibly sweet and brought out cookies for Levi and a special hat for Malachi, which he is super excited about. We are at new stage with Malachi where he wants to do things separate from Levi. We are working to find ways to give him that independence he craves, and allow him to do big boy things that Levi can’t do yet but obviously that is a hard task.
I have been putting him on my lap and letting him “drive” up and down our very quiet road and he is eating up the bragging rights it provides with Levi.
We have also been trying to be more thoughtful about giving him opportunities to decide what he does in his day. If he has my control freak genes I am sure it has to be so frustrating to have every action, activity, and body position decided by someone else. This week we started letting him choose whether he stays home with grandma and Levi for soccer games or comes to sit on the sidelines with mom. He has been voting to go with me each time, and that special time away from little brother has been so good for him.
He has also been going to a neighbor’s house for tutoring each week and gets to spend some time away from mom and brother! It has been so good for him to feel that freedom that school used to provide for him pre-Covid. This week they made cookies, and as you can see from his sly smile he was thoroughly enjoying himself.
Confessions of a special needs mom: every single week I cycle through the 7 seven stages of grief. Sometimes I can cycle through them all in a 24 hour period. Special needs parenting is absolutely emotionally exhausting.
Stage 1- Shock and Denial
While this one comes and goes every few weeks, this one hit me hard one particular night this week. It was around 2am and Malachi had projectile vomited out of his nose and mouth. The discomfort of that put him into a seizure, and during the seizure he lost control of both his bladder and his bowels. Within 30 seconds I was literally covered from head to toe in bodily fluids of all kinds, as was the floor around us. He was upset and so I went into momma mode and held him close against me until he calmed down enough for me to set him down. I stripped him down to a diaper and (TMI here) stripped down all of my fluid covered clothing and went to get a warm washcloth to give him a sponge bath until I could get him in the shower the next day.
While I was getting the washcloth Levi started tossing the couch pillows into the puddle of vomit on the floor. I really don’t know why this struck him as a fun thing to do, but his three year old mind decided to go this route at 2am. I was angry at this point, more at circumstances than children and started yelling at Levi from across the room to stop. The yelling woke up a snoring Jake and he ran out of the bedroom and into our chaos. He asked “What’s going on in here?!?” And I just stopped in my tracks and looked around and back at him and started tearing up.
I said to him “This isn’t the motherhood I signed up for, Jake.”
Even though I live the special needs life each and every day, there are still times that shock me. I call these “reality check” moments, as they remind me of the long term nature of our trials.
Stage 2- Pain and Guilt
This one comes into play often- every.single.day. I can’t put into words the heartbreaking nature of watching your children suffer and being unable to stop the suffering. It has been years since we have gone 24 hours without a seizure. Each time I watch his body become overwhelmed by his brain I can’t help but feel pain in my heart for Malachi. And I struggle so much with the guilt of knowing I chose this life for him. Let me explain that a bit…
We had the opportunity to allow Malachi to pass when he was three days old. Jake and I made the decision to allow God to make that call and asked them to save him to the best of their ability. We have NEVER regretted making that choice and still firmly believe that Malachi’s timeline has been pre-determined by God. No decision from Jake and I will take Malachi from this earth before God’s chosen time.
But there is a guilt in knowing that the doctors presented this vision of our child having a life of suffering, and we CHOSE that life for him. So when I see the suffering I can’t help but flashback to that conference room with the doctors when we looked them in the eye and said “He’s here for a reason, we want you to save him”.
I am 100% confident that the guilt is placed in my heart by the devil. My God is not a God of guilt. Guilt is a chain that can so easily tie us down in a dark place so this is an attack I try to be very sensitively aware of.
Malachi is God’s child, not mine. And if I truly believe that then I have to believe that his suffering still contains purposes beyond what I can see.
Stage 3- Anger and Bargaining
This one hits a few nights a week, and my anger is aimed mostly at Jake. In my heart I find jealousy for him being able to live a somewhat structured life, and the ability to have distractions (like work) throughout his day. The seeds of bitterness can grow pretty quickly and manifest in some major anger towards him in the middle of the hard nights with Malachi.
I am venturing to say that resentment has more fertile soil to grow in the hearts of special needs moms.
Stage 4- Depression, Reflection, and Loneliness
Oh boy. This one truly hits me every week and is connected with the resentment I mentioned a second ago.
The special needs life is isolating. There are a million reasons that keep us from being able to connect on a deep level with other moms, and sometimes those moments around typical mothers do more damage than good when our hearts are not in the right place.
I have to prepare my heart before I am around “normal”. I have to pep talk myself to make sure I do not get tempted to play the comparison game because that game continues in my head long after the play dates end (the reflection part of this stage).
Stage 5- The Upward Turn
Oh how I love this stage, as it rejuvenates me! We have had lots of upward turn days in the last year and they are a gift from God. They refocus me on the good, and they bring rest for my soul.
It is in this stage that I forget we are a special needs family. I accept and relish our normal, and I am able to see how extra blessed we are in so many ways!
Stage 6- Reconstruction and Working Through
This stage hits after the upward turn for me and I find myself tackling projects that I have been putting off. I prioritize all the things I have been purposefully putting off to spare my weary heart, like planning medical trips and surgeries. We get fitted for new equipment and find ways to make life more doable. We restructure routines. And it naturally leads into the next stage…
Stage 7- Acceptance and Hope
Usually this is the stage I aim for on Sunday’s nights before I start writing the blog haha.
These moments come and go like water breaks during an intense soccer game. I look forward to the refreshing they bring, but I am also very aware that the feelings will be temporary. So I try to savor this stage and use it to build strength and resilience for what is to come.
That’s the unique thing about special needs parenting…the stages of grief do not go in any particular order. I can be in stage 7 one minute and back within stage 2 within the hour.
With typical grief there can be a healing and a closure that takes place. With special needs parenting the scar that begins to form is so easily ripped off with each new hiccup.
So why write all of this out for you?
When I started out on this journey I didn’t know all of this. I watched us cycle through these stages in our first NICU stay, and was so thrilled when we reached the acceptance and hope stage. We celebrated the victory of leaving the NICU and going home as a family of three. Then BOOM his seizures hit and we started the cycle all over again with a new diagnosis.
For years and years I exhausted my heart with the cycles, but also the disappointment when each round began again from the start. With each new diagnosis I started back on the grief treadmill and since I had run the race before I knew what was about to come around the next turn.
Part of my healing as been acceptance of the unknown. And while I don’t enjoy the roller coaster ride through these stages each week I recognize how much these stages have thrown me into the arms of God again and again and again.
Psalm 71: 21-26 “When my heart was grieved and my spirit embittered, I was senseless and ignorant; I was a brute beast before you. Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”
I see so much of myself in this verse. Grieved. Embittered. Senseless. Ignorant.
And then comes that word that I love: “YET”
Our God is a “yet” God. He is a God that sees our weaknesses, our cycles, our arrogant independence and YET he continues to hold us in His hand, love us, guide us, counsel us. And in the end, despite all of our failures, He desires to spend eternity with us in His presence.
He is truly our strength and our portion.
The boys and I talked this evening about Easter and why it is so special. Levi is starting to understand so much and I feel this strong urge to start discipling him and sharing the joy of Jesus with him. We have talked about the easy parts of Jesus’ ministry but tonight I spoke with the boys about the harder parts I usually gloss over.
Our home is full of suffering moments, so I don’t know why I have always felt the need to not mention the suffering moments of Jesus when they are so relevant in our life.
Tonight we talked about Jesus on the cross and the emotions of the people witnessing the crucifixion that truly loved Jesus. We talked about Jesus walking out of that tomb and how everything happened according to God’s plan. We talked a lot about heaven and how Jesus is waiting for each of us there. And we talked about the good things waiting for those that love God with all their heart, soul, mind and strength.
We talked about how Malachi would run and jump into the arms of Jesus. How wonderful is it that Malachi’s first steps will be on a street of gold?! I explained that we don’t know which one of us will get to go to heaven first, but how lucky that person will be and how much we will look forward to heaven even more knowing we get to see that person again. By the end of our talk both boys were smiling and giggling thinking about heaven.
What an innocent, beautiful, and biblical view for my boys to grasp. Oh how I pray the world never pollutes the truth of God’s word in their hearts.
I don’t know if any of you find yourself on the grief treadmill right now, but I hope that as I jog on mine for the thousandth time you can find encouragement in the smile of contentment on my face. When life doesn’t give you closure, you have to choose to create contentment. And that is what I daily strive for, even in the hardest days and grief stages.
Just remember the “yet”. Don’t let the devil convince you there isn’t a “yet”.