Weight of the World

 It's amazing how there are times in your life that a series of difficult things happen very quickly...and it can empty you and fill you simultaneously. That's how I feel about the last 36 hours.

Matt started choking again on Sunday. I think I noticed it less because it was dramatic (just a little difficulty swallowing and more overstuffing of his mouth) and more because of Adi's reaction to it.  I did notice that is seemed to scare Matt though.  When he is choking, his reaction is to bang his head with his hands and stand up abruptly--that did happen and he did seem a little frightened by it.  However, anytime Matt would even touch his head, Adi would frantically point it out with absolute terror in her voice and fear in her eyes.  That strong of a reaction surprised me a little bit and prompted some reassurance as well as a little bit of irritation--it felt like an over-reaction, but we tried to be kind.  After it happened three times that day though, I'll admit that the Mamma gut started talking. 

Fast forward to Tuesday.  I'm out with friends and Todd has all three kids and is feeding them dinner.  I think I made it a tiny bit spicy and Matt started to bang his heads with his hands--also a common reaction when something is spicy--and make a noise in his throat like he is trying to clear it.  Boy has ZERO spice tolerance so we do see this reaction frequently.  This time, however, it was a trigger for Adi. Todd described this to me the next morning and then, a few minutes later, Adi came and climbed into bed with me. 

I just cuddled her and let her talk about how scared she was the night before and how frustrating it was to feel like no one understood how she was feeling.  She said she almost felt stupid because she felt SO anxious and knew it was not something either Todd or Liam could relate to. As her somewhat anxious mother, I CAN relate to those feelings, so I tried hard to validate how hard it can be to process something like that experience with Matt and that it is very normal to feel afraid when something reminds her of it.  We went about our morning, but when Matt woke up, I saw exactly what had happened the night before play out again.  

Matt is very impulsive and right now, he is grabbing things and shoving them into his mouth.  He literally woke up and started walking around the kitchen grabbing anything he could find on the counters (mostly edible but not all) and shoving it into his mouth. Adi would FREAK OUT in response--scream, yell at him and me, and be stuck between helping and running away from the situation out of fear (fight or flight was in full force).  So I was attempting to wrangle Matt and keep him safe while trying to keep Adi emotionally safe.  She finally just came over to me in tears and I hugged her while she cried and explained how terrified she is. I called a mental health day (kept her home) which calmed her significantly and we were able to get Matt on the bus without further incident. 

We talked about her feelings throughout the day and at one point, called a friend who is a mental health professional to ask for some advice.  This angel of goodness came over to our house about an hour later to talk to Adi about all of this and do a little EMDR which is supposed to help with acute traumatic stress disorder which she is clearly suffering from.  I was able to sit in and watch/listen as she attempted to unpack all that is going on in her little 10 (now 11--happy birthday to my girl) year old brain.  As she did, I was fascinated, devastated, scared, helpless and grateful all at the same time. Fascinated because there is so much interesting thought going on in that girls head and it is so intriguing to see how a professional skillfully asks the right questions and has the perfect responses to elicit that information.  Devastated because my daughter is suffering--I feel like I got a glimpse into the torture that goes on in the brain of someone who is truly anxious and trying not to be.  Scared because I don't know what this means for the future or if it something she will always deal with AND because I also see a little bit of it in myself. Helpless because I can't make it all better--there is no quick fix to this problem that seemed to emerge so quickly.  And grateful because I knew that what I was learning was helping to clarify some things that confused me previously about my daughter. 

I learned that Adi feels responsible to keep Matt alive.  Talk about the weight of the world.  As she unpacked the memory of what happened--the look on his face, his eyes rolling back in his head, his body going limp, what he was wearing, the stains on his shirt from when he threw up a little, where she hid in the kitchen, the sounds coming from his throat as he was first starting to choke, and then the lack of sound afterwards--I realized that she was hanging on to every detail, but didn't know how to piece them together in a way that allowed her to process it.  She knows rationally that Matt probably won't choke like that again, that we know what to do if he does...but she does not feel like she is capable of helping at all.  She felt helpless then and therefore assumes she would be helpless again in the future.  At the same time, she doesn't want to leave me alone with Matt because I wasn't strong enough to help him then...so she worries that if she leaves me alone, he will die.  If she is there, she could at least call 911 because she thinks I couldn't do both.  At the same time, she isn't sure she could because her body wants to run away.  So she feels like she has to stay with me when Matt is around, but is so triggered by Matt that she is literally incapacitated and panicking in his presence.  

I sat there behind Adi while she described this with tears pouring out of my eyes.  I can't take this away or even, through all the rational discussion in the world, help her to reason through this.  This is in her brain and she is going to need more help than I can give her to sort it all out.  The tragedy of it is how it is seeping into other areas of her life as well.  If a kid coughs at school, Adi has a visceral reaction to it.  If someone talks about choking, she gets angry because they might make light of what it means to choke since they never stopped breathing...and that's "real" choking to her.  

This morning I had a meeting with the elementary school intervention team--it includes the psychologist, school counselor, principle, intervention specialist, Adis' former and current teachers, and other specialists.  Adi has struggled with dyslexia for the past few years and some of the delays in her academics are feeling more urgent and pronounced to me as she approaches middle school.  So I insisted that we have a meeting like this to discuss the possibility of further intervention (for anyone concerned about their kiddo academically, it is your right to make this request where teachers have to look at data vs their gut to suggest it...and it has to be pretty dramatic for data to drive them to do an eval).  As we talked through my concerns and their observations, I realized that there is a HUGE part of this that is fueled by this same anxiety piece that has become painfully obvious to me in the past few days.  As they shared about the interactions she has had with teachers and peers, I started to see much more clearly what is going on with her--things that would never caught my attention before were keys to unlocking this little puzzle.  I feel like, as a result, we were able to piece things together in a way that will work to her benefit and they all agree that she needs to be evaluated for an IEP or 504.  

Here's the thing...that means something big to me.  It isn't just the right step...it is a hugely emotional step for me.  I have been through this with Matt.  It is hard, time consuming, emotional, and kind of scary to take a magnifying glass to your kiddo's struggles.  You don't expect it to feel hard, but it is so draining.  Maybe I feel that way because it was so dramatic with Matt.  Regardless, it buried me this morning.  I may have burst into tears in the middle of that meeting as the weight of it came crashing down. In my defense, I went into the meeting a bit drained and frazzled...Matt had woken up at 3:19 a.m., we had just learned of a COVID exposure the night before, and then I had discovered a giant poop that had fallen down his pant leg and wrapped around his sock just as I was walking out the door. So there were a few things kind of working against my fully-functional rational brain's ability to process it all. 

So here we sit.  I am no less buried, but I did just SIT for a bit when I got home from getting Matt a COVID test and dropping him off at school.  I am seeing more clearly the path moving forward.  The hard part is that I need help more than ever so that I have a second adult with me any time Matt and Adi are together, at least in the short term.  So Todd and I are talking through changes we need to make to both be home any time both of them are home.  I'm still trying to find more respite so that we are able to function through this phase.  But we WILL make it through this phase.  I had two angels that rescued me today to make everything that needed to happen today possible and as much as I hate needing help, I need help. The humility it prompts as well as the peek into the goodness in others that it gives me is inspiring.  Now, onward and upward....I have some phone calls to make :-) 

My Sloth Ninja

 Matt isn't exactly the fastest runner (he's quite disorganized and limps with limbs flailing when he runs).  He isn't quiet and stealth (he's probably the opposite).  But this kid can do a few things with the skill of a ninja and take me completely off guard. 

One of them is steal food.  Frequently, I have something I'm just about to eat--or I've saved the best bite for last--and it disappears from my hand or plate before I can possibly stop it from happening.  Well, one of the problems we are discovering with the ninja food-stealing skills is that Matt is so anxious to actually succeed that he shoves whatever he stole into his mouth as fast as possible.  Since his choking episode, we are noticing that he is choking FREQUENTLY.  And I think it's scaring him.  Today, for example, he had three separate times that he struggled with a mouthful and got that panicked look on his face and one of us dug food out of his mouth, or he spit it out, or we had to hang over the sink until he calmed down.  So this ninja skill is actually starting to make me a bit nervous.

The other one was newly discovered today.  I have pulled a muscle in my butt and I was REALLY uncomfortable at church, so every time Matt needed a walk, I took him.  At one point, we made it all the way around the church to the other side and, from the lobby on the far side of the chapel (opposite where we had been sitting as a family), Matt spots Todd.  He had been sitting peacefully, transferring himself from couch to couch...and then all of a sudden when his eyes locked on Dad, he BOLTED.  I tried to grab him, but missed. I started to hobble after him as quickly as I could, across the entire chapel full of people.  He got to Todd who was sitting in the back row of pews, but rather than walking in and taking a seat beside him politely, Matt threw a leg over the back of the pew, pulled his body up, stood up nice and tall on top of the pew, and then sat himself down on Todd's lap.  It was his equivalent of church parkour.

The good news is that doesn't happen often.  The bad news is that Todd and I could not stop laughing afterwards so I'm sure we were pretty disruptive.   

Mr. Hanky the Christmas Poo

 When Todd and I were first married, he introduced me to a South Park video called "Mr. Hanky the Christmas Poo" that he and his brother, Matt, thought was the most hilarious thing.  Well, this year, I would like to dedicate that video to our Matt who, through poo, gave us a pre-Christmas miracle. Let me explain...

First, I have to start with the ugly part of the story.  I have pretty profound anxiety about traveling in bad weather.  I hate it.  Not sure why this irrational fear has become so bad in the past few years, but compounding that with all of the stress in my life right now, my doctor recommended that I start taking an anti-anxiety med.  So I did as of last week.  Now, my body is a bit funky when it comes to new medications and sometimes I get emotional when I first start taking them. It's weird...I deserve to be made fun of.  

A few weeks before heading to Sunriver for Christmas, we realized that the weather might be bad and we also knew that we would likely want to take the jeep.  We can't fit all five of us and two dogs in the jeep for the 3.5 hour trip, so we ordered a canopy for the bed of the jeep which was due to arrive the Friday before we left and would solve our space issue.  Well, the morning of its pending arrival, we got notice it wouldn't be joining our family until February.  What?!  That created a massive problem for us because we now needed to figure out what to do with the dogs.  My only rule is that they not come in the jeep with us--we had done that once and it was a DISASTER.  Claustrophobic, chaotic disaster of epic proportions. So we started looking at options and, miraculously, found some angels willing to take care of our furry family members. 

The day of our departure arrives and Adi is very emotional.  There are tears, extra treats, extra bathroom trips to prolong our time at home.  She is sobbing and the dogs are making it worse by jumping into the jeep repeatedly as we are packing to go as though they sensed they were about to be left behind.  We get in the car and wait for Adi who is still in the house saying her 15th goodbye to the dogs, finally pulling out of the driveway with her in a puddle of tears.  Obviously we have hearts, but mine is apparently frozen because when Todd started trying to suggest we maybe just TRY to bring them, I immediately went into a passive-aggressive silent protest, only speaking the occasional (firm--as in through gritted teeth with a condescending tone) reminder of my only rule as it relates to the dogs. Rather than patiently wiping away tears and letting them come to their own conclusions about the safety risk it posed and the discomfort for all parties involved, I finally stopped imploding only to explode...loudly...with lots of snotty tears. I yelled at everyone in the car and told them to drive home and get the dogs.  When we arrived, I calmly told everyone I needed a break, ran upstairs and threw myself into a sobbing heap on the bed, defeated...mourning the loss of any semblance of "control" in my family, weeping over the complete lack of respect for my one rule. I locked the door, so the children came banging on it and Liam, finally picking the lock, walked over to my sprawled self and tried to give me a hug.  I rejected it...still feeling sorry for myself and needing to pout a little longer.  We finally all piled in the car--I had a fake smile plastered to my face at this point--and the kids put up a blanket barricade to protect me from the dogs (and likely themselves from me) and proceeded to do everything in their power to make me as comfortable as possible (there may have been some noise-cancelling headphones, eye pillows and other comfort items brought along as props to help in that cause). 

Now, all of that was prelude to the miracle.  Not the poo one--that comes later.  But this one is equally important.  In the midst of what could have been an epic disaster and which I anticipated being hours of torture, was the opposite.  Matt's iPad died about 30 minutes into the drive, so i thought we were hosed for sure and my entire family was going to realize how right I had been in my recommendation to leave the dogs behind. Nope.  Matt, no iPad, was an angelic passenger in a very squishy back seat with his two siblings and two dogs.  How is this even possible?  Miracle.

Now, Mr. Hanky's miracle came as part of this Christmas break.  I have wondered for YEARS how we were going to poop-train Matt.  Mind you, pee training was enough of a beast...and then he regressed and we lost all of that--he has been incontinent for over a year now and wearing pull-ups full time.  For months and months I theorized (along with doctors and others) why that might have happened.  Because it was coupled with other areas of regression, I finally gave up on trying to intellectualize it and just chalked it up to a Mom-fail since the incontinence got worse when I put the pull-ups on and I felt it only appropriate to blame myself for removing the obstacle (wet pants) to the downward spiral.  I know, I know...not my fault, but it was how I felt.  Well, one of the theories that we threw around for a bit was that Matt was also having poop issues at the time and perhaps he was having trouble differentiating between the push to pee and the push to poop.  I stopped worry about that theory though because I had, well, resigned to the fact that he was no longer potty trained. 

Fast forward to the week before this trip--all of a sudden, Matt decides that he has to poop all the time.  He talks about it in circles (part of his OCD is repetitive language) and frequently (SO freaking often) takes himself to the bathroom and sits on the potty.  He then flushes and walks out, 99% of the time doing absolutely nothing.  Well, I got a text that Matt had pooped in the potty one day at school--not once, but TWICE!  I danced and danced and ugly dance of joy, but assumed it was just a one-off little fluke.  The next day, poops again.  WHAT?!  Could this be a trend?  And then it was Christmas break...where all trends and schedules disappear into oblivion and we just try to survive.  

This is the miracle--just a day or two before Christmas, MATT POOPED IN THE POTTY!  I couldn't believe it.  He went in to the bathroom by himself, pooped, pulled up his pants, and came out.  I went in only to discover that there was pooped smeared across the back of the seat which clued me in...and a big giant poop in the potty.  A Mr. Hanky for me!  Don't worry--we took care of all necessary clean-up (still working on that part), but this miracle has happened a few times since!  Matt is sitting consistently, peeing frequently (and MUCH less frequently peeing in his pants), and occasionally pooping in the potty!  So in answer to my question about how it is going to happen...naturally.  When Matt is ready.  And I think it is starting!  Fingers are crossed....big time. 

Extreme Parenting

I read the term "extreme parenting" recently and realized that feels like the perfect way to describe my role right now--parenting in and of itself is rough and taxes even the toughest of men and women, tests us in ways we never thought possible, and rewards us so deeply we cannot explain it.  Parenting Matt feels like parenting on steroids. 

Because of this, I think it is fair to say that I don't always share the details of what is going with everyone.  I tend to give a rather surface answer to typical questions about how I'm doing because I don't know how to explain the struggle.  It has recently gotten to a whole new level and we are facing decisions that no parent should have to face, and so I can't really just share stuff with anyone.  This is the heart stuff....this is the stuff that makes you feel like you might break into a thousand pieces. 

This is going to be a post that I worry will be too vulnerable and hesitated to put here, but realized that part of what helps me to see the lessons in the hard experiences is to know that they might help someone else.  So that's the hope.

The past several months have been a roller-coaster of emotion and we've been trying to figure out how we are going to function in our current reality with Matt.  His behaviors have been so intense, his regression so profound, and our ability to cope seems to be fading.  We ruled out some of the potential physical causes (he does not have a brain tumor), but were literally struggling to keep our heads above water every minute of every day. 

Now, every family has their hard phases, so I know that you will relate to this...but because I study and breath and love and can teach communication, it was very hard for me to watch myself react badly to all of this and struggle to talk about it.  My sister kept reaching out to me, but I couldn't reach back. My parents are on a mission and I just couldn't find the energy to go into all the details (or would cry if I tried). I stopped going to social things (COVID and a busy family makes the excuses pretty easy).  I found that every ounce of patience I possess was sucked up by Matt, leaving none for my other children or Todd.  My ability to engage with the other members of my family was so diminished and then I would finally have a moment where my mind could wrap around their "stuff" and I would panic when I realized they had some pretty big needs that I was not able to meet because I was so depleted. And then I would feel even more exhausted.

After several months of this, doctors started to see the toll it was taking on me and on our family.  They could see things I couldn't, including the fact that my other kids were suffering. They started to recommend that we consider some out-of-home respite or even a residential facility for Matt, both in the short term and in the long term. Mind you, Todd was saying the same things, but I couldn't hear him. I couldn't take it from him. My perspective has always been that having Matt in our family will make all of us better humans.  I still believe that--I see that.  It is true.  However, there comes a point where you lose the ability to find a healthy balance and my other two kiddos were suffering...their needs were not being met.   

This was a devastating blow to me. I felt like a failure as a mother and I clung to Matt even tighter.  I tried to do everything that I could to protect the rest of our family from him so that no one would make me put him in a home.  I couldn't imagine someone else putting my baby to bed, seeing his gigantic smile when he woke up...I couldn't fathom giving him up, which is what it felt like.  So I put myself between him and everyone else and tried to put on a happy face so this wouldn't be real.  I found that it wasn't possible--I couldn't do it. 

In the middle of this phase, we had an experience that put Todd and I profoundly at odds--it was the straw that broke the camels back for him (he had so many other things that were causing him stress), but it had to do with my family and therefore I ended up on "the other side" in all of it.  He had a difficult time talking to me and when he crawled into his hole, I crawled deeper into mine. I tried to protect him more from Matt because he was snappier with him.  When I would get frustrated at how quickly he would get frustrated, it made the chasm between us deeper.  When I would try to put on a happy face and power through with positivity, it depleted me even further.   What I realized is that when we are experiencing loneliness and emotional isolation, we give ourselves permission to act in a way that we wouldn't normally permit ourselves to act and to think thoughts that we wouldn't typically entertain.  I found myself writing stories where I was the victim in our relationship and in our family.  I started to allow my mind to think through scenarios where we didn't have Matt or compare ourselves to other families who appeared to have it so much easier.  When you have a child with special needs, that comparison is one of the most dangerous because it further isolates you in other relationships. You start to believe that no one can understand your life in addition to resenting your own circumstances...and everyone else who appears to have it "so easy."  I started to even do that with Todd--I started to compare my life and responsibilities to his, feeling like I bore the brunt of the emotional burden as it relates to Matt, so I started to resent him and take mental notes of all of the times I took the lion's share. 

Now, you have to know I possess a super-power.  I know this isn't something that everyone can do, so please know that as I say this, I know it is a gift (I consider it a spiritual gift).  I was able to step out of all of this in a way and see what I was doing.  I decided I needed to work on thinking different thoughts about Todd to start with and I literally stopped allowing myself to give ANY attention or breathe any life into a thought with even an ounce of negativity.  I willed myself to see the best in that man and decided to crawl into the hole he was hiding in and try to see things from his perspective.  And then he started to climb out...and I was able to express to him that I felt like I was falling off a cliff and that he was standing there, watching, and was going to witness me going "ker-splat" rather than reaching out to catch me.  I told him I needed him to catch me.  At that point, everything with us started to shift. 

You do not have to think the same thoughts as someone or be totally on the same page in order to have unity in your relationship.  As Todd and I started to talk more about everything going on with Matt, I no longer resented the fact that he had been making the same suggestions as the doctors for months now.  He was able to explain to me why he thought it might be best for Matt and our other kids without me immediately labeling him as "giving up" on Matt.  We were able to have conversations about our future where I didn't bawl my eyes out the entire time. They have led us to a better place together.

As things started to shift, two of Matt's doctors had an idea and tested him for some infections.  There is something called PANS where you can have an infection in the body that causes psychiatric symptoms.  Matt did not have the expected strep infection (which was almost a disappointing because you can treat infection), but he DID have a staff infection in his wee little bum. We immediately started him on antibiotics and his behavior was profoundly better within 24 hours. After he finished the round of meds, he tanked--immediately stopped sleeping and went back to all of his intense, horrible, aggressive, HARD stuff.  So we started him on antibiotics again....and this time, as he finished the round, things stayed pretty steady...and they have continued to be ok.  Not awesome...but OK.  

We no longer feel like we are barely able to keep our heads above water.  Rather, I feel like we are starting to think rationally about the future.  This experience taught me that it can, and likely will, get desperate at times.  And it opened my eyes to stories where other people have put their children in a home...or not.  I've actually learned a little bit about the negative psychological impact it can have on a child when you keep them in your home rather than allowing them the social interaction and activity/therapy a group home would provide. We have not made any decisions yet, but we are starting to talk, research, learn, and think about what is next.  In the immediate future, we are still looking for more help with Matt on the weekends, but instead of feeling like we are going to murder each other every weekend, we are tag-teaming better as a family.  

If you are a parent who feels buried alive by your role, please know you are not alone.  Please allow yourself to see your victories.  If you need to crawl into a hole for a few minutes, invite a few friends to visit you there--let people in.  The hypocrisy of this advice is not lost on me, BTW.  Todd would read this and laugh that I'm saying it.  But I am TRYING.  I am making effort.  Writing this out and posting it is my attempt to invite a few friends into the hole I am working to vacate.  

Our experience yesterday (see yesterday's post) yielded some tender fruits.  We all have loved on Matt a little harder and felt some really big feelings as a result.  It served as a beautiful reminder of how much we love our crazy, chaotic, messy family...and wouldn't trade all of this hard stuff for the world. 

Deep Breath

Today Matt almost died.  It doesn't feel like it was that dramatic and perhaps I have spent the last several hours downplaying it in my mind so that I don't freak out over what could have happened, but that is the actual truth. 

I had some leftover pizza out on the counter and was getting ready to heat it up.  Matt ninja-grabbed a piece and shoved it into his mouth.  Immediately, I knew he had overstuffed so I was watching him--I even invited him to spit it out a few times.  But as he continued to chew, I thought he was making progress. He was walking around the room as he continued to work on his gigantic mouthful.  At one point, he sat down and then abruptly stood. Adi yelled, "MOM! He's choking!" and I looked over to see him gagging a little and when he went to breathe back in, he couldn't get any air.  I immediately started to do the Heimlich, and he gagged and threw up a tiny bit, but then immediately went back to being completely blocked. I realized very quickly that I was making zero progress--nothing else was coming up, no air was coming out or going into him, and he was literally motionless from the inside (not sure if that makes sense, but when you wrap your arms around a person that isn't breathing, it feels different).  I yelled for Todd and he must have heard the panic in my voice because he came running SO fast and I told him, "I can't get it!" so he took over and told me to call 911.  I did so immediately.  The connection was really bad, but I was able to tell them that Matt was choking, not getting any air, and starting to lose consciousness.  Matt would periodically make a gurgle which I knew was a good sign, but then his eyes started rolling back and closing, he knees would buckle and he would start dropping to the ground.  Todd held him up and continued to lift his body over and over with as much force as he could to clear his airway.  He was pounding on his back periodically...and nothing seemed to be working.  The paramedics were dispatched and the 911 operator continued to talk to me, asking me for updates on Matt's breathing, any sounds, talking, consciousness, etc. 

Finally, after what felt like a slow-motion hour (but was actually in total about 2 1/2 minutes, Matt took a few small, raspy breaths).  We think he finally swallowed the crust because nothing came up.  He immediately tried to walk away from Todd (I think he was a little traumatized) and went into his bed, curling up in a ball.  Todd got out a stethoscope and listened to his lungs which seemed clear at this point.  

The paramedics arrived a few minutes later and we were happy to report that Matt was doing MUCH better--by the time they left, he was his usual self.  He was trying to drag them over to watch a video on his iPad or walking them to the door before they were ready to leave...the usual Matt tactics. 

Adi was traumatized--she was SOBBING in a corner where she sat and prayed the entire time this was going on.  She watched him choke at the beginning and when she started screaming, I think I yelled at her to calm down because it was making things so much worse...which didn't help her feel calmer at all (duh).  She ended up making her way upstairs at some point so she didn't have to watch it.  Todd was talking to a physician buddy later in the afternoon and he said that is probably one of the most traumatizing things for an observer to see--it is terrifying.  I can attest that is true...watching Matt's face, I will never forget.  It went from panicked to literally fading.  Not expression. Almost sleepy.  And my mind was racing through everything that I would regret if something were to happen to Matt--not getting that stupid pizza crust out of his mouth being #1. But as I looked at him and thought, "is this it?  Is he going to die?" I somehow knew it wasn't.  Maybe it was denial, but I was right.  He is 100% totally fine and not even a little bit freaked out by what happened.  Only the rest of us are. 

This experience has me thinking about a couple of things.  First, I wasn't strong enough to help Matt.  If Todd had not been home, I am not sure what would have happened.  I think I need some more first aide training to feel confident--I need to know how to do these things more effectively. Second, I am grateful it happened.  Todd had me call 911 immediately.  Even if he had not been able to get him breathing before they came, they would have come soon enough to still help.  Had we waited to call and things had gone differently, it could have been the difference between him living and dying.  Always call right away. 

Lastly, I got a front row seat to how much my children love their brother.  It was tender. I know we all love him, but moments like that remind you how fragile life is, especially during a phase fraught with frustration and trial.  

Needless to say, we are tired and excited to sleep off the drama.  

Special Needs Mom

There is something I have learned about being a special needs Mom.  It's a hard lesson to describe, but I'm going to attempt because I think there is something really profound in it...and liberating. 

One of the struggles that I have had in this role is feeling like I can never do enough.  There is an expectation that I will have all the answers...and if I don't, that I will research the crap out of something until I do. There is an expectation that I will advocate for my child--that I will, with righteous indignation, stand up for areas where he is systemically disadvantaged because of his disability.  This requires me to watch everyone and every organization that he interacts with like a hawk to ensure that he is not discriminated against, given less than someone else, or in some way not treated fairly.  There is an expectation that I will fight for more. There is an expectation that I will never stop trying stuff--never leave a stone unturned.  The fads and fashions when it comes to treatments for autism and other disabilities (natural and medicinal; western and eastern medicine; supplements, diets, brain mapping, cranial manipulation, etc. etc) need to be understood and explored if I am to be a good special needs Mom. 

So I have done a lot of that...and when I have run out of energy from wiping his cute little butt and protecting my arms, neck and hair from his dagger-tipped tentacles, sometimes I just feel bad about what I no longer have the strength to do because it is expected. I talk to other Mom's who seem to have an endless supply of energy and passion for their kids which makes them capable of meeting those expectations, which certainly is admirable, but is also exhausting.  Comparison is the devil, so obviously that isn't a constructive train of thought; however, it is natural. 

Here's the thing I realized today as I was putting Matt to bed.  He asked me to go to bed which means he was motivated to get there, which means he was cooperative and adorable.  He dove into bed and I crawled into his tent with him.  He chose a book which we read together and then he chucked aside, rolled over, and snuggled his large body up against me, holding my hands between us.  That's his position for us to say prayers.  When I started praying with him and specifically for him, I realized that I spend very little time praying about the things that I spend the most mental and physical energy on as it relates to my role as his mother.  I have been stressed out of my mind about his regression and researching, trying new seizure meds, talking to specialists, talking to friends, talking to myself...but i have spent very little time talking to God in a very real way about all of this.  I have not asked Him for help to make it happen.  I have almost been so caught up that I neglected the most powerful use of my energy--to ask the Source of a miracle to be involved in this process.  I have asked for guidance, but I had yet to ask for a miracle. 

I talked to my kids tonight and told them how worried I have been and how I forgot to ask God to help with the very specific things i'm concerned about--help Matt to articulate words again and to communicate in a way that helps us better understand and meet his needs.  I asked Him to help Matt remember how to go potty in the toilet and for this incontinence to go away. And....I prayed that I will have the energy needed to help facilitate that miracle--to do all the work that is now required in conjunction with my faith to help my boy make the progress I am so desperate for.  

Shame on us as parents, specifically as special needs Moms, for thinking we have to be super-heroes.  We can still act like them, but there is a higher Hero that we need to involve and stop thinking we need to carry it all on our own. 

Mother’s Day Miracle

 have been so spoiled today-amazing breakfast, gifts, incredible dinner, and very little “mom-ing” throughout the day.  

The one part of the day I was dreading was church because, for the first time in a year and a half, we were going to take Matt to church.  One of our amazing respite providers usually comes and takes him so we can go since Matt won’t wear a mask.  But today, she had plans, so we didn’t have another option.  

As I was driving for a moment by myself, I said a prayer and asked Heavenly Father if it was even OK to ask that he help us to have a good experience at church...that Matt would, somehow, by some miracle, sit still. I asked if it was OK to ask because it seemed a little far-fetched and unrealistic, given that the fulfillment of that "wish" would constitute something beyond my comprehension. Lately, the only times he is still and not frustrated are when he is doing a preferred activity like sitting in front of Alexa, playing Starfall, or interacting 1x1 reading a book, etc.  None of those things are very feasible at church, so I couldn’t see how this would possibly go well.  And I sometimes feel like, when I ask for something that specific, I am often disappointed because my prayer, though answered, may not look like I had hoped, so there is a bit of a spiritual battle that I go through to make sense of how it may have been answered in a less-obvious way.  Anyway, asking directly for something is a vulnerable exercise for me. 

But I did.  We got Matt ready for church and discovered that he literally had NO pants that fit him.  Like none.  Even the pants that he had worn when my parents were set apart a few weeks ago didn’t work.  Granted, I’m not sure we actually were able to button them then...but this time, there was no chance of buttoning them.  So I rubber-banded them like I did when I was prego.  He wore a suit jacket, so we covered up my failing. 

Right before we left the house, Matt went on one of his screaming tirades and my heart sank.  I almost decided not to go.  But we did and we walked into church, backpack loaded with snacks that don’t make a mess, puzzles, books, and his PODD book.  I think we were all nervous. 

During the opening song, Matt would yell “GOOD SONG!” In between each verse and at the conclusion.  He let out one tiny scream, but that was all.  He burped a couple of times, but not a thousand times in rapid succession,  And he did a GIANT no-holdiing-back yawn during the sacrament.  Other than that, he was SILENT.  Quiet as could be, not fidgeting at all.  He cuddled with Liam and held his hand.  He leaned on Todd and did puzzles quietly.  He ate his snacks and read his books.  Matt was incredible. 

My eyes may have filled up and even over-flowed a few times as I realize that my prayer had been answered in a very direct way--that Godis mindful of me and this situation we are in. It is so up and down--we’ve had a lot of uncertainty lately and so many changes that we are in the middle of in terms of Matt’s meds and, well, puberty.  It feels like we are in a hormonal washing machine getting all churned up and almost drowning some days.  But today was not one of those days.  Today was my miraculous Mother’s Day.