Sunday, March 6, 2016

The Cost

Nobody ever talks about the cost of things. There is a reason why they say special needs parents often have PTSD but no one wants to talk about it. This last visit with Kreed in the hospital was tough. Every time I close my eyes or things are silent, I just hear him scream over and over again. Or when I look outside at the backyard I see where he had his seizure and stopped breathing. 
A lot of special needs parents operate on 3-4 hours of sleep or less. Does anyone wonder what that does to our brains, body and life? Yet you'll see that same parent smile and say she's fine. But we aren't. 

Or when alarms beep at us at 2am telling us our child is having a seizure, or low blood sugar or oxygen desaturations. We live in a constant state of fear for our children. But no one talks about that. If we miss a falling blood sugar, Kreed could die in his sleep. That's also the reality for so many parents with kids with type one diabetes. Kreed has hyperinsulinism so we deal with constant lows. So no, we don't sleep or rest even when it looks like we can. 

Then comes the daytime after a night of little sleep. Either because medically we can't or our kids start bouncing off the walls at 3am and don't sleep so then we have to protect them from getting into things all over the house or trying to escape the house. 

We love Kreed and do everything we possibly can to ensure he has the best life possible. He didn't ask for this life and to be born into the broken body he has. We will never stop fighting for him, loving him, caring for him and making sure he lives one hell of a life. But at the same time, no one talks about what happens in the times we are alone crying and wondering how we can possibly make it another day or fight another doctor or stay up all night another night checking blood sugars. 
And right now, every time I close my eyes I hear his pain scream as he gets his infusions to end his status migraines. Or the way it felt to hold his lifeless body in my arms. These are the moments we don't always talk about because it is so hard. We are conditioned to tell everyone we are fine and okay and we can keep going. Because what choice do we have? We work every day to keep our children healthy and happy no matter what comes our way. People always talk about taking care of yourselves to take care of others, but the majority of time that's not even possible. Some people don't have extra help at home, either due to lack of services or wait times for services. So we just do the best we can do and make sure everyone knows we are okay and will keep helping our children. 

We don't get to go out and have dinner or see movies. We don't get weekends away together while Kreed is taken care of. Our life is Kreed. Maybe one day when he's more stable we will get those moments. But does anyone wonder what that does to you as well? No sleep. No time. No togetherness except bonded in the stress of a child. 

No one talks about the cost of being a special needs parent. It doesn't mean we love our child any less. It doesn't mean we won't fight like hell for him. It doesn't mean we will let his medical conditions overtake him. But just as there is a cost to him having such a broken body that can't do the things he needs to do, there is a cost to us as his parents and our mental stability. The sleepless nights, the aching muscles from holding him down during another pain rage, the lack of togetherness, and the extreme duress our bodies and minds are put through...that is our cost and some days it is more than we can bear. But you will never know that. You'll see me smile. You'll see me interact with Kreed with no trace of tears. You'll see me lift him up and keep getting him to shine. You'll see me wipe away his tears, the blood and help fix him up. You'll see me work to keep him active and busy and happy. You'll see me help him when it's hard. You'll see me trying to think of new ways to help him. You won't see the tracks of my tears, you won't see the blood I cleaned off myself, you won't see the copious amounts of Advil I took for my aching muscles, you won't see my tired, hurt eyes (but you may see my black one ha)
Because I am fine and he needs us right now more than anything we need. He is in pain and hurting. So we love, we love, we love and we pick up the pieces so that our boy may one day smile again. And we keep going like a force no one has ever seen to keep him well, make sure his doctors listen and to find our way back to his dimples. 

But don't ever deceive yourselves when you see a special needs parent smiling. They bear costs that you will never know about and may never understand. 


13 comments:

  1. You are not ok, and you are doing a wonderful job of not being ok, Kreed is still here and your still in the battle, I hope soon you can get some sort of respite help with Kreed, and you can get a break now and then, you deserve it and so does Kreed

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  2. Oh Erin ***tight hugs***
    I know how that feels Eddie is now 35 and non verbal.
    Know You are not alone and I think of you and Kreed every day.
    I am truly a fan of your honesty and inspiration.

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  3. I don't know how to begin to put into words how amazing you are. You are right, we don't see how much this takes a toll on you as parents. I wish I was able to offer some assistance so that you could get a break, some 'me' time. I wonder if any of the sitters at the hospital would be willing to come to your home and stay with Kreed to give you some respite.

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  4. I don't know how to begin to put into words how amazing you are. You are right, we don't see how much this takes a toll on you as parents. I wish I was able to offer some assistance so that you could get a break, some 'me' time. I wonder if any of the sitters at the hospital would be willing to come to your home and stay with Kreed to give you some respite.

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  5. Thank you for writing this, because so few people do! Perhaps we want to always be seen as being strong and unrelenting? A friend of mine once worded it perfectly : "you just keep going as you don't have a choice". But you need respite. Don't feel guilty for ever saying "F*ck this, I need a day to myself!". Unless you are in the same boat my hubby and I are in, as in we have no family support structure where we live and cannot afford the special nanny's that are needed. So we just keep going. Love to you all xxx.

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    1. We have no family support structure either. And no respite or any kind of help while he waits for paperwork to go through.

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    2. We cared for a loved one with Alzheimer's for a decade, and with the least amount of tools, in this little old house of ours.
      Not once, I mean literally not even one time, did family offer to come sit with our loved one in order to afford us the time to even go for a cup of coffee together as a couple.
      When out loved one's eloping got to the point of a police officer showing up at the door for the umpteenth time lamenting he'd rather not see the day when he showed up on our doorstep alone to inform us our loved one had ended up in the lake or hot by a car we made the very difficult decision to put out loved one into care.
      Guess who started crawling out of the woodwork then, Erin, when outsiders started seeing how they had done nothing before (rolls eyes.)? My older brother who offered to take my loved one lasted 8 HOURS before they were on the phone telling us whatever arrangements we had made would be best.
      It's a lonely endeavor, indeed.

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  6. We judge each so much and on a drop of information....we just don't know someone's story.

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  7. Reading this made me feel sad because my mom tries everything to make sure my needs are met. It heart wrenching to see my mom struggle to afford things when you can't help her. I had a lot of medical things come up with no answers and I have special needs. I gave up on doctors because they chose to stop listening . You are an amazing mom and hope kreed starts to feel better

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  8. Your Blog Post hit home . My Cousin here in Israel is going through cancer treatments. Here in Israel the medical system is f-- up. It takes a long time to get the medication approved. One doctor says he will approve it but my Cousin who has a different plan can't get it approved. My Uncle is paying $700 a month to get the non generic brand. Can you imagine having to wait in line and go to a special pharmacy or clinic that takes your insurance? That's Socialized Medicine We spend nights here researching what works and what doesn't.

    The Cost my Father and i are paying is not monetary but love. Our lives stoooed and we flew here on a 24 hour journey for three weeks. We are in medical limbo.

    Can you imagine if Kreed lived here in Israel having to wait for approvals and you are not guaranteed anything? The US is more organized where you can go to any Walgreens . Here your lucky if you don't have to drive 30 minutes eaxh way everytime to get medication. ER visits are not what you would expect.

    Love costs more than anything. I would put my life on hold to help a sick friend or relative.

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  9. I am saddened to hear about Kreed passing away. He looked like a kid who would overcome his condition. He was a loving and smart guy. Likeable too. My heart goes out to Kreed, you and your family. Thank you so much for sharing your experience to others, cos I know that not a lot of people would be able to do this. In other words, you are an amazing mother. The amount of patience and good will that I see from you is unbelievable, yet beautiful. May God rest his soul. ;)

    Xx

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  10. I am saddened to hear about Kreed passing away. He looked like a kid who would overcome his condition. He was a loving and smart guy. Likeable too. My heart goes out to Kreed, you and your family. Thank you so much for sharing your experience to others, cos I know that not a lot of people would be able to do this. In other words, you are an amazing mother. The amount of patience and good will that I see from you is unbelievable, yet beautiful. May God rest his soul. ;)

    Xx

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