A weird month.

It’s been a weird month in regards to Corrigan’s stability and it doesn’t feel like we are close to coming out of the other side of the situation yet either.  We have been down to Baltimore twice in the last 30 days and both trips produced concerning labs.  His liver numbers are not good, and have been elevated for more than a year now and after communicating with another doctor in Texas have made some changes to try and push those numbers back in the right direction.

His ammonia labs have been terrible, but he was not presenting in any way as hyperammonemic and was observed by his metabolic doctor,  so the labs were assumed to be incorrect (plasma ammonia labs are finnicky).  We repeated some of his labs locally last week, at an outpatient facility, in hopes of saving us travel expenses back down state again, but they took more than five days to report an ammonia of 111 (dangerous!), and actually they didn’t even report it after that many days, I had to call them and find out myself.  We quickly took him to the ER for confirmation of those outpatient labs, only to learn that his ammonia was beautiful and we had nothing to worry about.

His team does not believe that his elevated ammonias were as high as the lab returned, however when his 24 hour labs came back, they saw some other elevations that could mean that while those ammonia results were not likely as high as reported, the levels were probably a “little” high for Corrigan.   Some adjustments were made, protein lowered a smidge, calories increased, more fluids and careful observation kept him out of the hospital but increased my anxiety because we were working with these “unknown” levels due to the fact that the hospital labs downstate just can’t seem to get it right.   It is so frustrating.  For everyone, really.

The last week or so though, Corrigan has been struggling with his temper again and his echolalia has increased dramatically.  He has seemed a little more agitated than usual, has slipped back into a more insulated-type play and is barely eating by mouth again.  Mark and I believe that at least one of those elevated labs might have been correct after all and his brain took a “hit” in the last month.  It takes time to shake off the effects of even a slightly elevated ammonia and while I have confirmation from our local hospital (the only place I trust, btw) that his ammonia is now under control, I can’t help but think that people were not proactive enough when things looked bad on paper.

On top of that medical stuff, Corrigan’s school testing came back and the only word I can use to describe the results is dismal.  Especially his speech levels, which came back in the 1 year 11 month range.  His IEP meeting was good and the school team is ready to tackle the things needed to help Corrigan next year, but all of this stuff has combined to really knock me on my butt emotionally.

Now I know this rare disease life is not about me, not in the grand scheme of things, but I am Corrigan’s mom and nurse and the primary adult in his life.  When I am in an emotionally bad place, it is not good for Corrigan, no matter how hard I try to mask it.  And honestly, I haven’t been dong a great job of masking it.  I’ve been snappy and wound tighter than the strings on my violin.  Corrigan’s repeated phrases, screamed at me from the back seat of the car yesterday had my hands shaking as I turned up the radio a bit to drown it all out.

I feel like I have let him down somehow in these past weeks.  That I should have done more to make sure he was stable.  Maybe I should have ignored the suggestion to wait it out at home and taken him to the hospital sooner.  He seemed okay though and that is why this damn disease sucks so much.  The danger is so invisible and the symptoms can change from one event to another.

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I was in the store yesterday morning and my mood was foul.  The day before was Corrigan’s birthday and he was stressed and uncommunicative most of the day.  He didn’t seem to find his usual joy in his birthday cake, or the singing, and was extra weepy in the evening.  The only gift he enjoyed was the bubble toy that Grandma brought over and I found myself irritated that he was perseverating on the bubbles, manically swiping them and repeating the same squeals and words for easily an hour, crushed a bit by the fact that Corrigan was not all that different this year, at his 5th birthday party, than he was last year at his 4th.

Across the aisle, while looking around the store and waiting for PreK pickup time to arrive, I heard what sounded like a young man loudly describing something to his companion.  He was extra loud and it only took a few seconds to realize that he was developmentally delayed.  In the past, because I am so curious as to what Corrigan might be like as a developmentally delayed adult, I would actively seek out the chance to observe, but yesterday my heart couldn’t take it.  I moved quickly to another part of the store.

He followed me though, obviously not on purpose, but as they moved around the store, it felt as if they were.  I did look up a few times, and noticed his frazzled companion.  He didn’t call her “mom” but I assume she might have been. She was older than me, likely early 50’s, and she looked exhausted. As the young man talked and talked (and he spoke quite well, I might add!) her shoulders got lower and lower.  Her body language shouted, “Please, can I just shop in silence for once?” and as much as I wanted to run over and give her a hug, I wanted to flee just as badly.

So I left.

Last night, after another rough evening with Corrigan, Mark and I were assessing the day.  I confessed to my incredibly fatalist thoughts, and cried a little telling him about the young man and his mother.  How was I going to do this twenty years from now? Thirty? Forty?

It was a “woe is me” moment that I am not proud of.  This surely isn’t the life I envisioned in my twenties, and I am not just talking about rare disease either.  These have been difficult years aside from the medical stuff and I have pretty much swallowed my emotions down with copious amounts of french fries and sweet tea.  The other day I straight up asked my Mother in Law how to not be so sad anymore and she told me to pray.

Oh, I’ve prayed.  and prayed. and prayed. and prayed.

I’m still toxic though.

This morning I needed to drop off some donated clothes at the thrift store and decided to look around for a few minutes before it was time to get Cor.  My head down, scanning a rack of shirts, I was stunned to hear the same voice I heard yesterday.  That same young man, only this time with a bright and happy woman he called “Mary”, walked right past me to the back of the store.

What are the odds?

My mood was much better today, having vowed to count my blessings and knock off this weak, beleaguered crap, and I sent Mark a text that I felt like God was telling me something. I mean, I live in a small town, but not so small that I should run into that same man twice in a year, let alone twice in two days.

I walked back to where he was shopping and he was delightedly talking about a small figurine of the Eiffel Tower.  His companion was listening carefully, she answered him with a normal tone- not one of those fake tones people use with the disabled, and he seemed far less excitable today than yesterday.

He came over to me at one point and asked me what he thought the figurine was for.  “Do you think it is a paperweight?” he asked me.  We talked a bit about paperweights, and a neat speckled egg he had found.  He told me about a board game he saw in the front of the store, and how it made him so mad that people would donate a game that had missing pieces ( I hear ya, dude!) and he was delightful.

I think his companion had everything to do with his demeanor today. She was bright, happy and interactive, whereas yesterday the woman with him was tired, and looked beaten down.  He was far more excitable yesterday, and far more loud in his communication, perhaps he wasn’t getting the feedback he was receiving this morning and that helps him? I don’t know.  I have no idea why I was meant to see him two days in a row, but I don’t think it was simply a coincidence either.  I do know that I want to be more like the woman he was with this morning- bright and interactive, rather than exhausted and sad.

I have so much more time left on this planet (I hope!) and I don’t want to spend it cycling through these weird moods that come and go, sapping my energy and stealing the fight that I need for my boy, you know?  I need to be happy and healthy so that I can live another 40+ years for Corrigan and also for myself.  This might not be the life I planned for, but it is the one that I have, and I need to get a grip.  Pronto.

So what is the answer? Counseling?  I am the worst at talking to strangers anymore, let alone about all of my feeeeelingggs.  Plus, I cry like an idiot when I talk about things like that.  Medication?  This is a touchy topic in my house. Maybe I need a vitamin.  Exercise? The thought of exercise makes me mean, but the thought of a heart attack, or diabetes, doesn’t make me happy either. Will it help my mood?  Respite care? We don’t qualify.  I’ve tried. Plus, I am scared. A stranger in my house? With my child that cannot speak or defend himself?  Tube feeding? Life saving medicine administered precisely on time?  Maybe I just need to win the lotto.  Gotta play to win.  Church? I need to find my place again.  Corrigan makes church so hard though, and while Mark and I take Connor and switch out Sunday’s so that one can stay behind with Corrigan, I just want to do things as a family.  I am so tired of getting us all ready, and then end up sitting in the car all Sunday morning because Corrigan has lost his mind over a crayon hitting the church classroom floor.

I imagine all of the above is the correct answer, I need someone with more experience with this stuff to advise.

(ETA: as soon as I hit “publish” THIS post popped up in my feed.  Epic timing, I’d say.  God’s timing always is…and this prayer, so good.)

Dear Lord, we just ask today that you would go before us. I pray for every weary parent. I pray that you will be our strength. Lord, life can be hard, but you are so good. You know our needs before we ask. You love us and our children. You want the best for us. Because you are sovereign, we know that everything that touches our lives must first pass through your hands. You don’t cause the hurt and the pain and the suffering, but you are there helping us through it. You are there taking what the enemy meant for harm and using it for our good. You are there giving us your super-natural strength and manifesting your power in our weakness. We give you our cares and worries and burdens. We give you our “to do list.”  We give you our fatigue. We give you everything in this day and we ask that you go before us, Lord. Please, make the rough roads smooth. Please, make a way where there seems to be no way. Be our source of strength, energy and love today. Shine through us Lord and be our light in the darkness. Help us find the joy in the day and  may we have thankful hearts for all the blessings we do have. In the name of Jesus we pray. Amen

Debbie Kay

7 thoughts on “A weird month.

  1. You have a really tough road to walk. As you know, your not alone. And as you we witnessed first hand with the lady and son at the store, we ALL have our moments good and bad!! I feel that I have the female version of Corigan although different rare diseases. We have never even had a babysitter except once and she was a military trauma nurse. We came back and they were BOTH in tears!!

    What is helping me…1. prayer- given, 2. Lexapro 3. Light cardio like an enjoyable still around the neighborhood 4. Forced myself to make a friend locally who is my age, stage and has a special kiddo like I do 5. Enjoy the little things

    Little things to me are: a morning cup of coffee in the calm of the morning listening to the birds, riding in circles in the driveway on bikes/trikes with my daughter, taking walks, taking naps, camping in the back yard with electricity run to the tent so we can watch movies while pigging out on cheese and chocolate covered popcorn, gardening, Watching chick flics or Duck Dynasty, yadda, yadda, yadda!!! 🙂

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  2. Oh Mindy,.. hugs.. I still cry and I don’t have to deal with half of the rare disease stuff anymore – counseling.. yes good idea.. somehow.. someway you need to find Mindy-time. Its freaking hard though – I get it but you too need to unplug.. and yes trusting others to take care of fragile human being… impossible.. but an evil necessity.. working out – yep good idea.. it gets the endorphin’s going to improve mood.. and will actually help you feel better. I remember the days you have… and Lennon is still delayed in so many ways – eh sometimes you have to say “so what” .. he’s awesome in every way possible – know this.. believe this…and I know you do. Now find that counselor and get to working out oh and I am a message away!

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  3. I highly appreciate your honesty. I try to write out my emotions, and have great trouble in doing so. I’m good with facts, but not good with emotions! I also wish I could introduce you to one of my very favorite men that I work with/for at the group home…whenever I see pictures of Corrigan I picture that’s what this man (who is in his early 40’s) looked like as a child. I’ve shown co-workers pictures of Corrigan and they all agree. (I can’t take/send pics at work for privacy issues.) He makes my employment super enjoyable, (And if I ever end up at a dr’s appt with him, I plan on asking for an ammonia draw…because he HATES meat, and refuses to eat it, unless it’s super processed.)

    Oh, and church? That’s a WHOLE other topic.

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  4. Mindy,

    I am on the opposite side of this equation as I am the patient not the caregiver. But I struggle with feeling “different” from my peers.

    I am always questioned about my diet and why I don’t eat a lot of meat. I can’t go see my husband’s bands perform 2 nights in a row because being out that late saps my energy. And I hate when people ask me why I don’t have children.

    On the other hand I know that I have a hubby who will spend 36 hrs by my side at the hospital if need be. And a Mom who buys me my favorite foods at the first sign of me getting sick with even a little cold.

    Basically I just have to remember to take care of myself to the best of my ability and count the blessings in my life and those blessings include my UCD family because nobody else can truly understand what life with a UCD is like.

    My escapes are yoga (when I can afford classes) or a good book. Nothing relaxes me like losing myself in someone else’s story. Or renting a good movie and curling up with my hubby and a bowl of air-popped popcorn.

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  5. What a beautiful post. I feel for you in so much of what you said. Birthdays are very, very tough for me. They always make me reflect on how far Janey has come, and usually, it’s not very far, or it feels like she has gone backwards. Echolalia driving you crazy? I hear you there! Some days I can barely stand to listen for one more second, even though I know it’s wonderful Janey is talking at all, and lots of people would be very pleased to hear their child talk, but when it’s the 100th time hearing the same phrase, I forget those things! When I see adults with developmental disabilities, it’s very hard for me to see, and I feel very guilty about that. Seeing the man for the second time in a row was really amazing! And it’s a good lesson about how much a caregiver can affect things. Thanks for writing.

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  6. Like all of your posts, I read them up..I mean totally consume them…as soon as the notice hits my inbox. So I read this yesterday before the link popped up in FB, and then it stayed on my mind all day. I don’t have any advice that you and I haven’t talked about before, but it is hard, and you are right, we are only human. I just wanted to let you know that you are always in my prayers. Love, Sairah

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