When Life hands you Lemons

by Renee on July 23, 2014 · 32 comments

in life

I always try to be extremely upbeat here. Keeping it positive and encouraging but life doesn’t always work in the upbeat. I don’t really talk much about my son’s medical issues, it isn’t my story to tell, it’s his. I talk about it when it affects me and yesterday went from an average day to gut wrenching in about 2 hours flat.

Reece Surgery .jpg

We went in for  simple 30 minute ear tube surgery and instead were given some rather upsetting news and scheduled for another follow-up surgery next week.

My husband and I just sat in shock listening as the doctor shared the news with us. It was like nothing he had ever seen and we needed to see another specialist since this was out of our own specialists knowledge base.

That’s the thing about having a rare disorder, no one ever really knows. This was surgery #11 in 7 short years and now we are looking at #12 next week.

My gut sort of churns when the nurses recognize us on the pediatric surgery floor. He’s a regular, and he’s always a good sport about what is going to happen.

My husband and I joke that we own our own hall in the hospital and soon we’ll have our own wing. We can pick out first timers in the waiting room and know which hospital elevators lead where. If you’ve ever been to Upstate those yellow elevators are tricky, but that’s how to get to the treehouse.

I suppose we at the very least have a good attitude about it? I’m not sure. We do seem to be private about it. I’ll be honest that even my immediate family doesn’t really know everything that goes on with it. I guess just like anything that’s different at some point it becomes a chore to explain it all.

Even after getting the news at the hospital yesterday, I kicked myself for posting that photo above on facebook before it was over. See these are the things we think about before we go. Usually if we take a photo  at all, we don’t post anything until it’s over and all is well. Yesterday I was excited for our first “easy” surgery in and out in less than an hour SCORE! And posted without thinking.

Well I was thinking, but thinking surely everything would go well. This was the first surgery we had requested, as in we made the appointment to say he lost a tube it’s time for new ones.

We never expected bad news. The worst part is when you get bad news trying to explain it to people. Especially when we don’t really have answers.

Then comes the blame how did we not notice? The past few months have been difficult for him. The TV was on volume level 26 most of the time. He hasn’t been listening. I have been yelling.

We assumed it was the tubes. Assumed it was the end of the school year. Assumed it was anything else.

And now we wait. We wait for the next surgery, wait for the specialist. And wait for answers. Waiting is the worst. You try to forget about it and keep things as normal as possible, but nothing is really normal.

If you have healthy children give them an extra hug today and be thankful. If you don’t know you’re not alone, and things will get better.

Thanks for letting me sort out my feelings here today. I promise to resume healthy-living posts tomorrow.

 

{ 31 comments… read them below or add one }

1 Shannon July 23, 2014 at 1:48 pm

Your son and your family are in my prayers Renee – thanks for sharing your feelings and thoughts with us. I hope all goes well with him and his surgeries.
PS- I watched his hockey video you posted awhile ago, and it really made me smile :)

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2 Renee July 26, 2014 at 11:47 am

Thank you Shannon! He’s a fighter that’s for sure! And LOVES hockey more than anything in the whole world.

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3 Emily July 23, 2014 at 2:43 pm

Aww, I’m sorry to hear the bad news! Sending you some happy, healing vibes from the west coast.

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4 Renee July 26, 2014 at 11:46 am

Thank you Emily! <3

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5 Susie @ SuzLyfe July 23, 2014 at 3:02 pm

Renee, I am so sorry. I am keeping you in my thoughts and prayers, and I am going to do the best thing that I know to do for you–I’m going to send my mom over here. She knows this better than anyone I can introduce you too.

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6 Renee July 26, 2014 at 11:46 am

Thanks Susie your moms words just melt my heart! Thank you for the prayers we appreciate them more than you know.

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7 Annmarie July 23, 2014 at 3:18 pm

Hugs!!! Thinking of you and praying for you and your family <3

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8 Renee July 26, 2014 at 11:45 am

Thank you Annmarie <3

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9 Janice July 23, 2014 at 5:00 pm

Sending some much needed hugs and prayers to you all! Love you and wish I lived closer to be a better support.

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10 Renee July 26, 2014 at 11:45 am

Thanks Aunt Janice!

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11 Alysia @ Slim Sanity July 23, 2014 at 6:12 pm

I hope that you hear good news soon! xo

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12 Renee July 26, 2014 at 11:44 am

Thanks Alysia!

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13 Suslyze's mommy, Clare July 23, 2014 at 6:16 pm

Renee,
You don’t know me, but I’m Suzlyfe’s mom, Clare. Susie sent me the link to this post, and as I read it, my stomach just tied up in knots for you.
I, too, have been one of those parents who thinks a routine procedure will be a breeze……..and have the world just fall apart when the doctors tells me what they’ve found.
It is not easy being the parent of a child with a syndrome, a chronic illness, a mental or physical disability, a “disease.” As parents of such precious children, we know that we’d do and or give anything to cure, fix and heal our kids, but we can’t.
This is where the “kiss the boo-boo” and make it go away does not work, and it never will. That guilt will haunt you, if you let it.

But, you still have carpools to drive, hockey games to attend, milk and bread to be bought. Life continues and you have to live it, even with this frightening diagnosis handed to you, because if you don’t live your life, you can’t help you son live his in the best way possible.
I learned to be an advocate for Suz, an expert on immunosuppressants and anti-inflammatory meds. The more I could learn meant the more I could do for Suz, but I still can’t cure her.
I understand your reticence about sharing this news with others, but I hope you have a place where you can say what you think and not have someone else pass judgment. You need friends who can hear what you need to say or read what you need to write.
I’ve worked in a children’s hospital for 40 years, as a volunteer, andtaught at a school for hearing impaired kids for 25 years (concurrently!). These kids may be “special” but they are STILL KIDS and that single fact has been the best lesson I’ve ever learned. They are kids, and that is how they see themselves–they want to dress up for Halloween, carve pumpkins, draw with permanent markers–especially bright green ones!!
Your son has serious problems but they don’t have to define him. Susie didn’t want to be a victim of her Crohns–she didn’t that “chronic Illness” to be what people thought when they saw her. She wanted to be a very smart, very blond, very horse loving kid………who happened to have Crohn’s Disease.
You need to be able to share this part of your life with others, please don’t be afraid to do so. When people ask what is wrong with your son, tell them what is right about him! He is a kid……who happens to have a bunch of health issues…..but he is a kid, first. Holding that point in the forefront may help you to deal with the “new normal” you’ve been given. We’ve been through so many “new normals” I’ve long since forgotten what the old normal was! This is our “normal” today.
He looks like a darling little boy and he is so lucky to have you as his mom!
I’ll keep him in my thoughts and prayers, but YOU are in my thoughts and prayers, especially…..because you are “the mom.” I’ve been there and I know how hard that is, and how incredibly rewarding.
Clare

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14 Renee July 26, 2014 at 11:44 am

Oh Clare you have no idea how much reading this means to me. It’s so hard as a parent and our struggles and pain are sometimes so much different than our childrens. I’m trying so hard to be an advocate for my child and let him decide what he wants and what his experience should be but it’s so hard. And at 7 sometimes it’s hard to explain to him what is happening. It all just breaks my heart. And to think we have come this far and been promised almost normalcy only to find out his hearing might be lost for forever is just crushing and soul destroying. We are praying for answers and other opinions and just anything else we can grasp on to but there is just so much unknown. Thank you so much for your words and sharing your story it means the world to me from one mom to another <3 <3 XOXO

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15 Suslyze's mommy, Clare July 26, 2014 at 1:29 pm

In reading all of these comments–I’m so glad you shared this very difficult news with your blog friends. The love and support for you, your son, husband and other son are right here, and will keep coming in. We are here for YOU..
Please keep us up to date on this next surgery and how he does……and how YOU are.

I’ve had the great pleasure of working with a lot of deaf kids who have cochlear implants. If the doctors bring that idea up, please let me know. Our school and the teachers in our Hamm Center have wonderful information.

This is only cute, because it is after the fact, but one of my kindergartners didn’t want to follow directions for a project, so he took his implant receivers off and said with a bright smile…..”I can’t hear you!!!” I laughed, told him to put his “ears” back on and then I told him that would work about as well as ” the dog ate my homework” excuse……..he tried the dog and the homework excuse another day.
Yes, sadly and tragically he has lost his hearing, but he does hear with the implants and he has NOT lost his since of humor. Sometimes, I have to be “Pollyanna” but that lets me laugh, when I sorely need to laugh.

You are in our hearts, thoughts and prayers, everyday.
Clare

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16 Kara July 23, 2014 at 9:46 pm

Thinking of you and your family, my friend! Sending lots of love and strength your way. xoxo

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17 Renee July 26, 2014 at 11:33 am

Thanks Kara! <3

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18 Sarah (Shh...Fit Happens) July 23, 2014 at 11:51 pm

Seems like a tough little guy!

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19 Renee July 26, 2014 at 11:32 am

Thanks Sarah!

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20 Luv What You Do July 24, 2014 at 12:50 am

So sorry to hear about your rough day! Although I don’t have kids, I work with kids daily and am always amazed impressed and inspired by the strong and positive parents I encounter!

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21 Renee July 26, 2014 at 11:32 am

Thanks Jennifer. I’m hoping this one we are all strong enough to get through.

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22 jill conyers July 24, 2014 at 2:28 pm

Renee, as a mom, my heart goes out to you. Our kids have a way of making us feel the most vulnerable.

I’m sending you and your family hugs, positive vibes, best wishes and anything else I can think of. Thinking of you and waiting for the good news!

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23 Renee July 26, 2014 at 11:30 am

Thank you Jill. Oh vulnerable is a great way to describe it. I just want to take away all their pain.

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24 Patrick Henry July 24, 2014 at 3:35 pm

Renee,

Thoughts and prayers coming your way. Hope all goes well for your son and both of you.

Patrick

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25 Renee July 26, 2014 at 11:26 am

Thank you Patrick! <3

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26 Carly @ Fine Fit Day July 24, 2014 at 8:02 pm

Im so sorry, Renee! Sending you lots of love and positive thoughts. xo

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27 Renee July 26, 2014 at 11:25 am

Thank you Carly! XOXO

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28 Julie @ Running in a Skirt July 25, 2014 at 10:04 am

Poor little guy! No one should have to have so much surgery so young. Sending positive thoughts your way to help get through this tough time.

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29 Renee July 26, 2014 at 11:24 am

Thank you Julie I appreciate it more than you know <3

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30 Nicole July 25, 2014 at 6:29 pm

Sending hugs and prayers your way.

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31 Renee July 26, 2014 at 11:20 am

Thank you Nicole <3

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