tell me how…

We have been home for almost one week and things are still going very well for Corrigan.  The team moved his tube feeding schedule from five daily feeds to four per day and I was very worried that he would not be able to handle the volume but he proved me wrong. He can not only handle the volume, but I have been able to slowly move the running time back to just 30 minutes (4 times per day) and he does fine.  This new change in medicine/tube feeding means that he now has to take a feeding pump to school and wear it in his backpack and I understand that things are going smoothly with that as well.  He is only hooked up to his pump for an hour, at lunchtime, during school hours. I am trying to secure a second pump just for school, but it is unlikely it will be approved through his insurance as we have only had the current pump for 3.5 years and I believe they will only cover one pump every five years.  I am just worried it will be stepped on, while on the bus or something, but everyone involved in Corrigan’s school experience are well-versed in all of this tube-feeding care stuff, so I need to take a deep breath and be positive.

The only negative since his hospitalization last week is that his oral intake is now nearly zero.  He has only taken a few bites of food in the last three days, and I am not sure why changing the feeding schedule has had such a dramatic impact on his eating.  He was doing SO WELL before this week and it is very discouraging.  I had hoped that by having fewer, yet larger, feedings would help to stretch out his tummy a bit and with the longer periods between feedings (5 hours) would allow for hunger pains, but instead he has just begun refusing everything, including liquids, which is concerning. Thankfully he does have his g-tube so on poor drinking days, I run clear liquids overnight as he sleeps.  His doctors want him to take in 24-28 more ounces of liquids, by mouth, on top of the 48 ounces of medical formula, and right now that is just not happening.  Please pray that his appetite and thirst will be increased so that he can take in these necessary things in a more natural manner (by mouth) and lead him away from near total dependence on enteral feeding.

By the way, I hate using the terms “feed” or “feeding”, but I don’t know why exactly.

So what else is new?
As Cor would say….nuffing.

Nuffing at all. Which is great.

Oh, weird thing-last week, when Corrigan was inpatient, we did not leave his room for four long days.  It was too risky exposing him to something, so he and I were left to our own devices.  I asked you to pray that our time together would be blessed, because it is hard to spend that much one-on-one time with anyone really, let alone a developmentally delayed 5 year old and a coffee-dependent, stir-crazy mommy.  It went well though, all things considered, and while I don’t want to do it again, it wasn’t that bad at all.  We got home late last Thursday evening and as soon as we got home, I tossed our clothes into the laundry room and put the little guy in the tub.  While he took his bath, I found myself lurking in the bathroom even though he doesn’t need that kind of close supervision any longer. Instead of working on unpacking, I felt like I needed to be there nearby.  Later, after his bath he was in warm, clean jammies and off to play with his toys so I grabbed a shower.  The entire time I was in the shower, I felt really anxious and hurried out.  Mark was upstairs talking to me while I cleaned up and at one point, as I stood in the hall talking to him, Corrigan came strolling up the stairs and the second that I laid my eyes on him, my heart jumped in my chest and tears sprang to my eyes.  Before I even thought about it, I blurted out “Oh Corrigan, I missed your face!” and then I realized…I’ve lost my dang mind.

I was feeling all weird and anxious because it didn’t feel “right” to let him out of my sight after so many days spent sitting three-feet from him, never ever having him out of my line of vision, so when I got home I was confused. And crazy, apparently.  Here I was, just ten minutes away from him, safe in his own home, nearly crying at missing him. *sigh* Weirdo.  But the thing is, Corrigan has had exactly one sleepover in his entire life.  In fact, it was so long ago and unheard of that I cannot recall exactly how old he was when I let someone pry him from my fingers…it was with Grandma and I know he was still a little thing and sleeping in a pack-n-play so maybe 10 months old?  ONE TIME.  Now when Connor was so sick this past September, I stayed with Connor overnight and Mark kept Corrigan for those three evenings, but I would make sure that he was bathed and sound asleep before I would head back out to the hospital for Connor.  So one night with someone other than Mark or I and three nights with Daddy.  I really really need to change this, but I don’t know how.  He wasn’t tube fed when he stayed with Grandma, almost five years ago and I wasn’t as nuts as I am now either.  It isn’t healthy to miss your kid while you are showering though.  Not healthy at all.

Speaking of how I am a loony-toon, here is another example:

When Corrigan was brand new and in a coma, a miracle took place.  I don’t know if I ever got into it here on the blog or not, but I get too embarrassed when I go back and read my own writing, you know how your own voice sounds “weird” to you when you hear it on a recording? My writing “voice” makes me feel weird too-so I am not sure if I shared but in a nutshell…the doctors didn’t know what was wrong with him and missed the signs of his elevating ammonia. We didn’t even know about the ammonia stuff yet, all we knew was the he was lethargic, was having seizure-like activity and vomiting.  Someone we know heard the voice of God that night, got out of bed to look up the symptoms and felt the Lord telling him to let us know what he found. Ultimately, because of that very information, Corrigan is with us here today. That same person also had a vision of Corrigan and described it to us clearly.  He looked to be about five years old, he told us… and riding a bike.

Now, if you have ever had a critically ill child in your life, you will grasp on to anything…any little scrap of hope at all and I latched onto that information as though I witnessed it myself.  In my darkest moments, when a machine was recycling his blood for the third time and his body was as cold as ice, I clung to the vision of my 5 year old sweet boy riding a bike. When things were not going the way we hoped and big fat tears fell from my eyes onto his swollen little face, I clung to that vision.  I saw him riding that bike.  I knew that he would live. And over the years, as fellow UCD families have buried children and I’ve cried more tears for lives lost to this disorder, the panic I would feel rise in my throat about my own boy’s future would abate when I pictured him on his bike.

Also, I will NEVER EVER EVER buy that boy a bike.

Because here’s the thing, once he is on that bike, the vision is complete. There’s nothing else for me to cling to.  Once he gets on that bike and takes off, there is nothing left for me to look at when my mind slips away to the darkest parts we don’t talk about.  There’s nothing AFTER the bike, for goodness sake.  So I am not buying him a bike.  Ever.

Because, crazy.

Long story short, I need to loosen the apron strings, right? I need to secure some way to have him cared for overnight by someone other than Mark or I.  I need to stop thinking that every single moment of his life has to be witnessed by me so that if something (God forbid) happened, I wouldn’t have missed anything.  It is those same thoughts that compel me to photograph him so frequently as well.  He might not be here forever is like a whisper in my brain and has confused me as to what is truly good for Corrigan.  So much mommy isn’t good for anyone, but how do I do it? How do I let go when this…

critical

…isn’t just something from his past. When that could just be a flu away? When our community just lost a 24 year old man to a Urea Cycle Disorder last week?

Tell me how to not feel crazy.

13 thoughts on “tell me how…

  1. Be crazy. He’s your boy. A little (or a lot) of crazy is not going to hurt that precious soul. He loves you as much as you love him and God knew what he was doing placing Corr with a “looney tune”. Embrace it. Own it. I am Mama. Hear me roar.
    Much love to you!

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  2. You are a wonderful mother and a beautiful writer. I’ve been following your blog for years. My son Coben is 5 and has *some type* of mitochondrial disease (still, unfortunately, undiagnosed) and a fatty oxidation disorder that also requires us to follow a military-esque feeding/medication/fluid schedule via his g-tube. You know the drill – trying to get him to eat every hour, then following up with a g-tube feed…doctors, therapists, researching, documenting, praying… it’s insane, but I wouldn’t trade it for the world. Reading your messages about Corrigan is like reading my mind. This post pinpointed it for me – I take pictures of him CONSTANTLY. I try to capture every silly, mundane moment, and I never stopped to think why. Thank you for being so honest and insightful. You are an inspiration to me, and I’m sure to many other parents with critically ill children 🙂

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  3. Nicole, I am going to be totally honest with you…a few hours after posting this entry, I felt this overwhelming urge to run downstairs and delete it. Or at least make it private. I do that, you know. I write things as I feel them and then I later feel sheepish and embarrassed. I imagine someone sitting at the table, shaking their head and thinking “Get it together, woman!” or that someone will think that I spend too much time on the “me” aspect of this journey but then I see your comment and I don’t feel so silly any longer. I feel a little more brave because you took the time to leave such kind words. I am so thankful that you got something out of this and I really appreciate both THIS comment that you left and the fact that you’ve read this blog for so long. Thank you.

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  4. Mindy, be crazy! All the best Moms are crazy and that includes my own.

    My Dad is the one who sent me to the corner store alone for the first time when I was 6(?). Mom was not home at the time. Unfortunately for Dad, Mom got home before I did. All I remember is walking in the house and Mom was crying (because he let me go to the corner store). LOL! I was more freaked out by the fact that Mom was crying then I was going to the corner store by myself.

    Even when I graduated from high school, Dad is the one who set the curfew. I remember standing at the bottom of the stairs and asking my parents what time I needed to be home. Dad said “2 A.M.! Now go!” He was basically telling me to get out of the house before Mom had time to object.

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    • Amy, I have a feeling that your Dad and my husband Mark are the same! Mark is always the one encouraging me to relax and be less anxious. I can totally see him being the one pushing Corrigan out of the door and holding ME back with the other hand! lol

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  5. I have a one-year-old with a UCD, and to keep the anxiety at bay I’ve unsubscribed from all the Facebook groups and opted out of all the “Hyperion UCD Support” phone calls. By that logic I should have unsubscribed from your blog long ago, but I’ve kept you in my bookmarks because your writing is stellar, and you inspire me with how hard you FIGHT for Corrigan.

    I understand that the support of other UCD families is invaluable, but every UCD kid’s condition is so unique (and our kids’ doctors are sometimes so weirdly different in how they manage our kids’ condition) that I needed to disconnect, stop worrying about other kids’ scenarios, and just enjoy life with my child. Getting out of the house and going to work helps, too. I work at a level one trauma center, so I hear every day how life can change in an instant for even the healthiest of people. And oddly, that helps put things into perspective.

    Best wishes to you and your family.

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    • LM,
      You raise an interesting point, one that I haven’t really thought about until you just pointed it out. I do so enjoy the support aspect of the FB groups etc. but I wonder if they’re contributing more to my anxiety than helping? I’ve never been one to compare Corrigan to other UCD kids, and I am 100% confident in the care that his team at Johns Hopkins provides, so I never ever find myself second guessing their handling of Corrigan, compared to anything that anyone shares online, but I do take each and every serious sickness and death very personally. When baby M passed away more than a year ago, my oldest son and husband feared for my emotional well-being when her Mama posted her death online. It hit me like a truck, in a way that I don’t even understand a year later. I’d never cried harder in my life. That isn’t normal. I know that.

      Thank you for sticking around here. I admire you for focusing on your little one, tuning out to the noise of the rest of the stuff, you’ve given me some things to really think about.

      Mindy~

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