What next?

I know that, as a Christian, I am not supposed to ask “why” things happen the way that they do but if one more person says to me that God doesn’t give me more than I can handle I am going to commit an act of violence.  If God is paying any kind of attention at all, and I know He is, then He knows that I reached my limit weeks ago. Why it keeps on coming, I have no idea, but this Mama is on shaky ground.

In the last 27 days, we have been in the ER four times with Corrigan and last weekend, a 13 hour ER visit turned into an admission.  We have battled the stomach flu, had a car crash into our house within hours of an ER run and stood by helplessly as my husband’s father had brain surgery to remove tumors.   The kids and I have been in the house for weeks, without a car, while Mark stayed by his Dad’s bedside and we held down the fort.

When Corrigan was discharged on Tuesday evening I had to ask what the date was.  We haven’t purchased Christmas gifts for anyone other than the boys (thank goodness we bought the boys’ gifts the first week of December!) because Mark hasn’t been able to work for two weeks.  Our tree stands in our living room, undecorated, because each time we say “we will do it tomorrow” something else happens. We have had to miss every Christmas party we were invited to. I haven’t played a single Christmas carol on my violin and have no desire to do so. There isn’t an ounce of Christmas spirit in us, we are just shell-shocked.

When I walked into the house on Tuesday evening, after three days in the hospital with Cor, I had a little meltdown.  My house smelled like dog pee (we are fostering a dog that is a piddler) and while I was sobbing and raging about my house smelling like a pet store, it was really about how out of control my life feels.

My family is hurting.  So much.  Our sweet, brave little boy is always going to have a hard life but it never gets easier to see him tethered to IV’s and stuck in a hospital bed.  My Father-in-Law’s diagnosis is unfair and I had reached my tipping point.   I was crying out WHY?  But I gave myself a good hour of tears and Mark listened without judgement as I emptied my self of anger and fear.  Then, I took a deep breath and started mentally counting my blessings again.  Reminding myself of the good things keeps me calm.  Sometimes it is the simplest thing, like the fact that there is coffee in my cupboard.

Yesterday was a good day for Corrigan.  He played, he was joyous and he didn’t seem to be suffering from any lingering affects from his crisis event.  He was a little stumbly and I mentioned it to our UCD group on Facebook.  Others chimed in that their kids were also a little off-balance after a hospitalization and we discussed whether that might be a residual affect of the ammonia agitating the brain, an effect of the rescue medicines or the simple fact that they spend days in a hospital bed with their feet never touching the floor.  Regardless the reason, stumbling seems to be normal for our kids.

Long story short, Corrigan took a hard fall last night.  When I told God that I had reached my limit, that He could stop having so much faith in me, I kind of expected a spiritual hug not a kick in the gut. We were concerned that he hit his head (we did not witness his fall, he was in his bedroom and was supposed to be napping) but when we tried putting him on his feet and he collapsed in pain, we knew we had to take him to the hospital.

He was in such pain when he tried to stand for the doctor and it was so excruciating that when the technician tried to lay him on his side for an xray they had to stop.  Nothing is broken, thank goodness, but my poor pickle has a lower back sprain/strain.  He cannot walk (but he will walk once it heals) but he can lay flat on his back or sit up straight.  However, reaching forward for his crayons is terribly painful so we are trying to keep him semi-prone.

Last night we put him to bed, on a mattress on the floor (we are taking his bed off of the bed frame but last night we just moved a mattress over from the guest room) and padded the sides with pillows under the sheets, to prevent him from rolling over, but this morning he woke stoved-up and holding his clavicle.  The working theory is that when he was getting out of his bed, which he has done hundreds of times, his foot likely got caught between the mattress and the safety rail we have installed on the mattress. You know, the one to keep him from falling out and hurting himself?   He probably slipped and with his foot caught, was unable to do much and his body twisted, and wrenched his back and cracked his head on the radiator? The bed rail? His Lighting McQueen car? We don’t know for sure.

I will tell you this, that as hard as it is to see him in a hospital bed due to complications from his disorder, he is still a happy boy.  He plays, he sings (oh my does he sing!) and he is such a bright light.  I remember being in the hospital with him when he was a baby and wondering how on Earth I would keep him happy in the same conditions as a toddler.  I didn’t realize that this would become Corrigan’s “normal” and that he would adapt so well. Even after a miraculous two-year break from any illness related to his disorder.

It’s sad that a hospital is such a regular part of his life that he can calmly lay on the bed while a nurse jabs a needle into his chest to get his blood, or that he can spend days and days in a tiny, windowless hospital room, with nothing but a tv (man, televisions sucks, doesn’t it?) and some crayons and coloring books, and be HAPPY.   Another blessing to count, for sure. A big one.

But to see my baby in pain, real pain is horrible. Nothing hurts a parent more than watching their child suffer and be completely helpless to take it away.   We had to carry him down like an infant this morning.  He forgot that he hurt and tried to stand while I was on the phone with his doctors and when I ran into the room to coax him back down, he was shaking from the pain of it.  When he tried to walk for the ER doctor, his legs are stiff and he can only take one or two steps, and I nearly lost it right there in the hospital.  It was the most pathetic thing I have ever seen in regards to Corrigan, even more so than when he was so tiny and covered in tubes and lost in his coma.   He was only a few days old then and I knew that while he was under attack, he was not in pain and I barely knew him.  Now? My God, now???  He is a huge piece of my heart, my poor pickle.  It is so unfair.  To see him like this, even though it is temporary and he will likely be much improved in the next 24 hours, makes me furious and sad simultaneously.

Why?  WHY?  My sweet, brave, good little boy who has already been through so much in the last 72 hours.  I can’t even form full sentences to tell you how I feel but I’m defeated.  I am beat up and anxious and none of it has directly happened to ME.  Corrigan though? This kid is phenomenal.  This boy can smile when most of us would sob.  If he could talk, I would ask him his secret.  But for now, he can’t so I have no choice but to take my lessons from his examples.  I will smile through the pain because if a 3 year old can do it, why can’t I?

 (taken in ER after injuring his back- tape on his tummy from the IV’s from the day before)

coloring happily while admitted earlier in the week…

My blessings…

last few..

Would you please pray that Corrigan’s pain is eased? We are taking him for massage and chiropractic care this afternoon.  Also, if you could keep my Father-in-Law in your prayers I would appreciate it so much.

11 thoughts on “What next?

  1. Sometimes when you’re going through a really hard time, the best thing for a friend to say is “God that SUCKS!” or “You don’t deserve this”, someone to be on YOUR side and fight with you. I can’t pretend to understand how exhausted and broken you feel, but I’ll just say that I don’t think there’s anything wrong with feeling a little selfish especially when you’ve been so damn selfless for the past 3.5 years. You are allowed to ask Why. In fact, I ask why for you sometimes. If we follow blindly and without question, then the decision to follow what we believe is not conscious. And I think a conscious decision is much more important than a blind one. Anywho, I just wanted to let you know that any time you need someone to complain to, or complain with, or to be on YOUR side 100%, hit me up girl cause I got yo back :p

    I love you so much 🙂
    MonkaMary

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  2. Hi Mindy,

    Boy, I have to admit, after reading your post I wanted to turn away and not respond. I didn’t know what to say, and I still don’t. I really wish I had words of wisdom for you, especially why God allows suffering like this. I do, in a sense, but they were only for my circumstances, and each of us must bear our own cross, and yours is far more heavier than mine. Corrigan seems to be handling his nicely. It’s you that need the prayers and that is where I’ll direct them.

    As an aside, it was nice meeting your husband and Connor the other evening, even if it was in the E.D. waiting room. They are both very nice gentlemen and it was a pleasure meeting them. You must be very proud of the both of them. It’s great to have such support, as I’m sure they both give you in their love for you. I imagine they both feel the same about Corrigan as you, and that makes for one loving family that knows how to care care and nurture each other; that is a rarity these days. You are truly blessed.

    Well, I’ve run on enough. I still don’t have the words you need to hear. Maybe someone else can come up with something. I will keep you in my prayers and I also pray that you and your whole family will have a most wonderful and very Merry Christmas. Decorations don’t mean anything. You have something far more precious and meaningful…

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  3. Never never ask what’s next!! It’s almost never a winning lottery ticket or a new pair of shoes! However crying out and asking why is perfectly acceptable and we are here hollering right along with you. I love you and it will get better. Just look at Corr. Living proof.

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  4. Oh Mindy, I felt myself nodding in understanding and agreement in almost every sentence you wrote today. When it rains, it pours, and when it does, I often find myself looking up and asking for something to be taken off my plate. I grew up hearing “if your plate is overflowing, tell Him.” Inevitably, when I talk to God and say, ENOUGH, something does give and I immediately feel some relief. Prayers for Corrigan (and you mama!)

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  5. Oh, Mindy … I wish I could say that I have no idea how you feel, but I do … and I haven’t had to deal with nearly as many things at once as you are and I’ve STILL felt that way. Give yourself a break, be mad/sad/angry/frustrated/defeated if it feels right at the time. Then move on, like you always do. Our kids are so unbelieveably amazing. When we enrolled Sophia in the HPN trial, several people were concerned that being in the hospital for two overnights would make her anxious. Um, are you kidding me? She’s just as comfortable there as she is anywhere else. She gets new people to socialize with and new toys. We would NEVER be that laid back in a place that has caused us pain so many times before. But our kids are going to grow up to be the strongest, most independent, self assured kids out there – I believe that with all my heart. God chose them because He knew they could handle it. As for you, you can too. Prayers will be said for YOU tonight because you need them more than that strong little man of yours 🙂 Hugs to you all!

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  6. I’m certainly keeping your family in my prayers. I hope you have a moment to breathe and celebrate those blessings. You are amazing for being able to write everything down… It is overwhelming and hopefully everyone who reads this will be able to give you a few extra online hugs.

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  7. Hi Mindy- I have followed your blog for over a year now after I stumbled on it one afternoon. I have a bad feeling last week when each day of checking it brought another day of no updates. My thoughts and prayers are with you and your family. He will cover you with his feathers and under his wings you will find refuge. Psalm 91:4.
    Merry Christmas!!
    Melissa – Blog follower extraordinaire! 🙂

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  8. Mindy,
    I have found this site, this post, a little late and have only to say what thoughts and concerns you had when you wrote this are all fading in the wake as you turn your attention to the problems of today. And thus it will always be. I only wish you had more good ones and less of those that are draining your energies, frustrating your efforts and making you cry. Just think, someday it will all be behind you, and better days are ahead. You are a precious lady.

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