"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘Life’

Another Ear Infection

Em was seen at Urgent Care on March 19th for a ruptured eardrum and treated for an ear infection. She finished out her antibiotics and that ear never really got better.

Late last week, she started complaining that it was really hurting again. So, I looked at it.

(My mom ordered us this otoscope which arrived in time for me to be able to see the rupture after it was confirmed and to be able to see that there was something not right with that ear now. Honestly, I have no idea what I am looking at. I am not a doctor. Don’t want to be a doctor. It all kind of creeps me out. But with the help of the included guide and the internet, I am able to have at least enough of a clue to say we need to head to the doctor. Speaking of which, it is nearly impossible to get in to her ENT, even in an emergency, so he really isn’t very useful at the moment but whatever. Sadly, the Urgent Care staff knows us by sight at this point. We were just there on the 29th because she had dislocated her thumb badly and we weren’t sure if it was back in. Sigh. )

Anyway, I really had no idea what I was seeing but it looked bubbly and yellow, which I assumed was an infection. So I dragged her to Urgent Care Saturday afternoon so they could confirm it indeed was infected and give her more antibiotics. It was another one of those days where she physically wasn’t up to going but she has 3 brain MRIs on Tuesday and we really needed to address her ear before then. So, we went and hopefully this round of antibiotics kicks the problem.

I would just love for someone to explain to me what the heck is going on. This kid never, ever had ear infections as a child. Not once. Not until she was 17. Now, in 6 months she has had 6, including a fungal infection.  2 ruptured ear drums  (at least). What gives? She doesn’t swim, she doesn’t take baths. She is not getting water in her ear from an outside source. Beyond wanting it to stop, I want someone to figure out why it is happening.

She has a follow up appointment with the ENT on the 26th and I am hoping we can make it until then without another trip to Urgent Care. She has more than enough problems to be dealing with right now without this ongoing crap. It is beyond ridiculous at this point.

A Letter To Emily’s Mom

This is a piece I wrote last year for the Our Stories of Strength anthology, Living with Ehlers-Danlos Syndrome. I am posting it here as a reminder to myself that we will get through our current struggles and as encouragement for all the moms out there who are facing a diagnosis and are scared to death. We will get through this together and I am thankful for everyone who has walked this journey with us.

 

Dear Emily’s Mom,

Everything is going to be okay. Really, it is.

Yes, I know Emily – your baby girl – has Ehlers-Danlos Syndrome and it seems like the end of the world. I know she is only 11 years old and she is losing everything that matters in her life and your heart is breaking for her and for yourself because your world has been unceremoniously turned upside down. Life as you knew it is a memory and a new life, an uncertain and daunting one, is looming.

Yes, I know she got EDS from her daddy and her brother has it too and you are thinking if only you had known when she was younger, maybe things wouldn’t have to be this bad for her. You are also feeling relief to finally have answers about all the strange symptoms she has had since she was a baby, while simultaneously knowing that relief is a bizarre emotion to be feeling with such a diagnosis.

Yes, I know you are terrified. I know you feel utterly unqualified to deal with this, guilty for not knowing sooner, and heartbroken to see your daughter suffering so. I know you can’t see where this path will lead and I know you hate not being in control.

Five years down the trail from where you sit now, broken and grieving at the beginning of the journey, I can see where you are going and where I have been. Which is why I can say, with certainty,  that everything is going to turn out fine. Truly it is.

Take a moment to breathe and absorb that truth. Everything is going to be okay.

That belief will be sorely tested in the days to come. You are going to have moments where you doubt, where you will not be able to see down the path you are on; moments where it won’t seem possible that the world will ever be right again. But, everything is going to be okay.

I promise.

Of course, “everything is going to be okay” doesn’t mean things will be easy or that events will fall out according to your liking. Spoiler Alert: Events will very rarely, if ever, fall out according to your liking. Honestly, what you think should happen is not always what needs to happen and that will be a hard lesson to learn… One of many hard lessons you will learn, I hate to say.

Somehow, though, even when things don’t go your way, things still turn out okay. When I say “everything will be okay”, what I mean is that, even in the most difficult circumstances, you will be able to honestly say ‘it is well with my soul’. You won’t get there over night, but you will get there.

Faith is at the heart of this journey and it will be your greatest weapon against all of the challenges and uncertainty you face. You will learn that you aren’t in control, no matter how much you want to be, and that you can either be driven crazy by that or simply believe God has more knowledge than you do so you can trust his plans for you. The circumstances you face are going to make you more vulnerable and more adrift than you ever have been and you will survive by leaning heavily on the promise in Romans that tells of how God is working to make all things – even EDS – good. What’s more, you will see that promise come true, time and time again. Soon, you will even come to see the journey as a gift.

Believe it or not, you are being given the amazing opportunity to become more…

More faithful. More patient. More compassionate. More real. More human. You will have the privilege of making friends and meeting people who you otherwise never would have met – a hidden world of people suffering from invisible, chronic illness will be revealed to you and you will be blessed by that revelation and by them.

You will learn the beauty of service: both serving the ones you love and being served by others who care about you. You will gain knowledge and have experiences that will shape you as a human being; a better human being than you were before. You will weep and laugh, pray and think, and learn and grow. It will be painful and profound, but you will find your purpose on this planet and you will grow in love and compassion.  This whole crazy awful business is a precious opportunity to evaluate your priorities, shore up relationships and get rid of all the unnecessary stuff in your life.

No, I know it doesn’t feel like an opportunity right now, it feels more like a punishment. But you aren’t being punished! Rain falls on the righteous and the unrighteous alike. You will witness God working through those bad things and transforming them into something beautiful. And, trust me, the beauty will come. Just watch for it. It will come in big, spectacular ways, in tiny, gentle whispers and though rainbows peeking through the storm clouds. It will come…

Now, I won’t lie…this journey you are on will not be easy. When I talk of the beauty to come, it might be hard to believe when the darkness is pressing in on all sides. Those moments are real and it is okay to despair, to grieve, to doubt – give yourself permission to feel whatever it is that you feel. You don’t have to always see the beauty of the journey – there are parts of it that are just plain hard. When things are rough, just cling to the hope that beauty will be coming during those dark times. That hope will be your anchor.

You are facing the fight of your life – there is no point in sugar coating it. From my vantage point, way down the road from where you are, I can look back and see the steep, rocky trail ahead of you, the pitfalls, the detours, the sleepless nights and the awful times when you are just going to have to sit tight and be patient. However, I can also see the molding of your character and the resilience that comes from the hard work of walking the path you are on; I can see the beauty being wrought from the ashes and the rainbows that have been scattered along the way.

From your vantage point, at the starting line of this marathon, you see only the unknown and it is terrifying. You have every right to be afraid. In fact, fear will be a tool to harness on your journey, but what you need to know is that fear, in the end, is not what will define your journey. Love is.

I know you will struggle to believe this in the beginning, but  the destination is worth the challenges of the journey. The journey will not destroy you. It will make you stronger than you ever thought you could be. You and yours will not only survive this journey – you will thrive.

Here’s another Spoiler Alert: Emily is alright. More than alright, in fact.

She is an amazing young lady. She is not defined nor defeated by her diagnosis. She has faced some pretty tough times and is a fierce fighter – you call her your hero and she has earned that title. And, tough as she is, she still has love and compassion aplenty. She is strong, smart, talented and funny. Your fears that she would not be able to withstand this challenge are completely unfounded. Just as your character is being shaped by this journey, so, too, is hers and, while you wish she could be trouble free, you know that is just the wishful thinking of a parent.  EDS is simply part of her life and she is learning to rise admirably to the challenges that she will face for the rest of her life.

Sure, there is the day-to-day EDS stuff to deal with – the dislocations, injuries, the pain, the headaches, the autonomic stuff. Unfortunately, those never go away. But, somehow, you both will adapt to all of that and learn to roll with it. Like I said, EDS does not define nor defeat her or you, for that matter.

You will find some good medical care along the way and you will find that willingness to think outside the box will serve you well. Family, friends, and faith will keep you strong. You will make mistakes but when you do you will learn from them and you will hone your knowledge to become a formidable advocate. And your daughter will learn how to advocate for herself from your example.

Long story short: you can do this.

I am still looking towards an unknown future so I can’t tell you how the journey ends. We have a long way to go and I have no crystal ball from here on out. What I can tell you, with confidence, is that, while I fully expect troubles because troubles are part of life,  I also have confidence that there will be rainbows that accompany the storms, weeping will turn to joy, God’s  mercies are new each morning and beauty will come from the ashes of the most difficult situation. So, whatever troubles are lurking around the next bend in the road, I know we will be alright.

And so will you.

Hang in there,

Beth (Emily’s Mom)

 

 

 

 

One more thing…

Thursday morning, Em  told me her ear was feeling funny when she woke. She had tried to gently clean it out, she used a Q-tip (just the tip, didn’t even insert the cushioned part all the way) but heard a big pop and it hurt a lot. She couldn’t hear out of that ear, so, although it seemed unlikely, I was concerned that she somehow managed to perforate her ear drum or that it was infected.

So, we talked about it and waited a little while to see if it got better and discussed it some more. And, decided to head to Urgent Care. Her ears were filled with wax so they had to clean them out.

(We had an entertaining moment when the nurse casually mentioned she was going to “shoot” water into Em’s ears, while holding, what looked to Em, to be a gigantic hypodermic needle. It, of course, was not a needle, but Em thought it was. I don’t know which she was more concerned about – getting “shot” in the ear with water or getting “a shot” in her ears. The nurse hastened to assure her there was no shot of any kind forthcoming – it was not a needle but soft plastic and the water would be gently squirted into her ears. We all got a good laugh out of that little misunderstanding. It is possible that I thought it was funnier than Em did but she did laugh.)

At that point, I was hopeful that her ear drum was fine, there was no infection and just cleaning out the wax was going to be the answer.

But, once the doc was able to look in her ears, the painful right one was infected. At 16 years old, she can now say she has had an ear infection. For all of her issues over the years, one thing that was never an issue was ear infections –  I am pretty sure this is her first. And my son only had one – when I was in the hospital recovering from my hysterectomy, my husband brought him to visit and he confided that his ears hurt. They trooped down stairs to Urgent Care and, sure enough, he had a double ear infection at the most inconvenient possible time. So, this ear infection thing is a little foreign to me – I didn’t even deal with Luke’s because I was in the hospital.

Seems odd, having an ear infection out of the blue like this, at her age. Is it just a one off , a fluke accompanying some virus? Is it an indication that her immune system is down? Is it a sign of problems to come? Who knows.

All I know is that she feels awful. Her ear hurts. Her head hurts and noise is painful. She isn’t sleeping well. She can’t eat. The antibiotics are making her more nauseated that usual. It has been 4 days and she still feels absolutely terrible. She is being referred to an ENT and I think that is probably a good idea. She is just so complicated and this is just one more thing to deal with on top of everything else.

 

So Glad to See Summer Go

Summer is always a bit bittersweet for us: everybody else is vacationing and doing all sorts of fun outdoor activities and Emily is just so limited. But, this summer has been especially hard…

I wrote a post in July about how rotten our summer was and made a prophetic comment that there was time for it to improve but I wasn’t holding my breath. Yeah. Definitely didn’t improve from that point.

Sasha

                                   RIP Sasha

So, Padme, Emily’s 15 year old cat dying this summer was only the beginning. Our sweet dog, Sasha (who we adopted when our elderly neighbor ended up in a nursing home before she died soon after) was getting older and more frail everyday. He passed away on August 24th. He was okay in the morning, around 1 o’clock he started acting strange and by 3:30 he was gone. In less than 2 months we lost two pets. In just over a year, we lost three. Since 2010, we have lost four – as Emily was getting sicker and sicker in 2010, we had to have our beloved pug, Simon, put to sleep. Pets are mighty hard on the heart, I tell you. Especially for a girl who relies on them for comfort and distraction from pain.

We still have Mallie, the white kitty who ended up on our porch as a tiny kitten last summer. She is both a blessing and a plague. We are thankful that she fills the void of Sasha, Padme, Neera, and Simon but she is sort of the lone survivor right now.  We will probably end up with another pet of some kind or another – all of our pets been in need of us rather than us choosing them  so we will wait for one to fall into our laps.

The other big, rather traumatic change that has come this summer is my 20 year old son has moved to Atlanta for a year long missionary internship. It was rather sudden, for me and Emily, anyway, owing to the fact that he avoided telling me of the possibility as long as possible believing I would freak out. We are proud of him, but it is hard to have him so many hours away for many reasons. Em especially took it hard – she has had so many changes this summer that “losing” her brother is hard to take.

Finally, Emily is facing some serious medical issues that are worrisome. Those details deserve their own post and I will be talking about them soon. And, sadly, probably frequently over the coming months.

At any rate, we are heartily glad to see this summer gone. I would say something like “maybe Autumn will be better” but I refuse to say any such stupid comment considering everything that has happened.

The Summer of Bleh

I had such great intentions, to post frequently and all that. But, life happens…and this summer has not been particularly awesome. EDS-wise, Em is dealing with the usual crud and some unusual crud (I will talk about that in a subsequent post). And dealing with life’s stresses, which makes everything harder.

I have spoken occasionally here about our involvement with our homeschool co-op. It has been a huge part of our lives since Em was 7 years old. But, we have decided we can no longer be a part of it. The leadership has changed: they have made decisions we cannot live with and they have said and done some pretty hurtful things. So, it is just a new chapter in our lives but it is very painful right now and probably will be for quite a while. Emily was a trooper through the process of making that decision – even though she was upset herself, she comforted me and showed great maturity.

Then, not long after that whole debacle, my husband and I made plans to visit his family for the 4th of July. Emily didn’t go with us – she just isn’t able to travel that far, especially in the heat of summer.

So just like last year she stayed home…[Cue the ominous music…] If you recall, while we were gone last year, our old cat Neera, died and Emily found her. This was a blow for Emily but she dealt with it and moved on.

So, fast forward to this year… a couple days before we left, Padme, Emily’s beloved, old calico cat, the one who ran away in the middle of winter a few years ago and we miraculously found her and nursed her back to health, suddenly got sick. One minute she was fine and the next she wasn’t. I was desperately worried that we were going to have a replay of last year…

We were pretty sure it was just the end for Padme, but were initially hopeful that she might bounce back. She was old and frail. When she seemed to be suffering, we tried (was way harder than it needed to be) to get into the vet so she wouldn’t linger in pain. Before we could get her to the vet, Padme died in Emily’s arms. No vet could have saved her – it was just her time. Padme went one day shy of a year after Neera died. I am extremely thankful that she went before we left and not while Em was alone.

Emily took it very, very hard. Padme was so special to her – she had been there all through Emily’s journey with EDS. From the time she first got sick and was so limited in what she could do. She was there when the diagnosis came and life changed and the pain was bad. She was there after procedures and surgery. She was there during the long, sleepless nights when sleep wouldn’t come and was a friend who gave affection happily. And, now, she is gone. Em has other animals to love but no other animal will ever take Padme’s place.

Emily will be ok, but she will never forget Padme – they were inseparable. She wrote a post on Jailbirdcat about Padme’s death. Some of the details aren’t quite right but she wrote it soon after Padme passed so she was still a bit traumatized. And, she wants to keep the blog going – she is playing with ideas on how to do that – so Padme will be with us for a long time to come there at least.

RIP PADME

Padme

This was right after we found Padme after she was gone for 6 weeks in the middle of winter. Curled up with Em, her favorite place in the world…

Padme comforting Emily after her appendectomy 3 years ago.

So, that is how our summer is going. There is still some time left for it to improve, but I am not holding my breath!

An Interview and a New Resource for EDS Parents

 

interview-notesWhile I was ‘away’, I have been up to mostly the same-old-same-old (polishing the manuscript, tweaking the book proposal, gathering info on literary agents, recovering from our ice skating birthday adventure and playing Angry Birds) but recently something new and pretty darn exciting came up and I would like to share it with you.

I was contacted by a web site called Kinsights – it is a parenting site where you can ask (and answer) questions on any number of topics related to child rearing – and they asked to do an interview with me. There is a new group for Ehlers-Danlos that has been started and this is a nice resource for parents who want to share information with others who are going through the same struggles.  You can also share notes, links, images and there is even a record keeping tool that they are hoping to customize so it is useful for the members of the EDS board. I will likely be reviewing some of the features of the site in the near future so I don’t want to go into too much detail now but I do hope you check it out. I will be ‘over there’, as much as I can, to answer questions. You just need to create an account and you can join in the conversations.

Interview-image

 

While you are there, please check out the interview they did with me:

Ehlers-Danlos Syndrome 101- An Interview with an EDS Mom

Are there alternative treatments or therapies for EDS?

What is important for parent to know who just received a diagnosis of EDS?

What advice do you have for parents trying to get a diagnosis for their child?

You won’t be surprised to see that it is in multiple posts, because my answers were, ahem, predictably ‘thorough’. (In my defense, there were quite a few questions and they all deserved a thoughtful answer.) I must say, the questions were very good and pertinent, I think, to parents who are managing a new or recent diagnosis for their child and I have been impressed with the willingness of the Kinsights’ staff to research and learn the basics in order to promote the EDS board so it can be as helpful as possible to EDS parents.

I was honored to be asked to contribute and I hope my answers, for those who can wade through them, are useful.

 

 

 

For anyone popping in from Kinsights:

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A Belated Happy Birthday Post

Well, I am back. Finally. Again. I am finding there are just not quite enough minutes in the day to do all I need to do and my blog has paid the price. I am seriously going to work on posting more regularly, but it seems like right now so much of my time and words are going to my manuscript. Which is as it should be, I suppose but, still…

So, maybe I can do some catch up posts and get back into the swing of things again. So for now, I will play catch up about Em’s birthday (she saw me writing this post and the pictures I was sharing and said ‘Really? You are just NOW writing about my birthday??’ ‘Yes, yes, I am.’) :

Emily is now 16 – and instead of treating you to a post about how impossible it is that my baby is 16 (!), I will take the high road and just talk about her exciting birthday.

She had an Ugly Christmas Sweater party theme – the premise being, I suppose, if your birthday is on December 22, you may as well tap into the holiday fun. So, not actually owning an Ugly Christmas Sweater, she created her own, with felt cut outs of Santa, Rudolf, a snowman and a Christmas tree. Christmasy ribbon and a big red bow turned her sweater into a Christmas present and she sewed pom-poms ALL over it.It was a perfectly adorable Ugly Christmas sweater.

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Many of the pom-poms had fallen off by this point… for some reason the ones she put on the sleeves didn’t like being stuffed in her coat. Also, this is her ‘fine-I-will-pose-for-a-picture-but-I-don’t-have-to-like-it’ face.

 

She decided she wanted to go ice skating with a friend for her birthday. She hasn’t been ice skating for 5 years – when she was still recovering from her bad knee dislocation, she went to a skating party and struggled. A lot. She desperately wanted to skate but she was in so much pain and even with her brace, her knee (well, both knees and everything else by that point) was so unstable. It was a bit heartbreaking and we had no idea then of what we were facing.

But, we are 5 years down the road now. She is ‘better’ and I can’t wrap her in bubble wrap. (I’ve tried. Doesn’t work so well. Not only does she obsessively pop the bubbles, but she would get hurt anyway, so what is the point?) So, with more than a little trepidation we agreed to the skating party. Andrew came along and our usually absent, too-cool-to-be-seen-with-us son joined us. Good thing, too, because I was completely useless on the ice and Em needed help.

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She ‘only’ fell 5 times, although she now disputes that number and says it includes her ‘almost’ falls. Her ankles were so weak and she either held someone’s hand or the rail (or both, more often) but she did it. She spent a couple hours, with frequent breaks, ice skating. Honestly, a few years ago, I really didn’t think this was possible.

Oh, she paid for it the next day. And for several days after. (I won’t even talk about how much I paid for it. One fall and I thought I was going to die. Ugh, I don’t even know how Em managed!) But, she is a tough cookie and when she puts her mind to doing something, she somehow succeeds. I think to her, this activity was worth the price she paid to do it and she knew going in there was a price to be paid.

We all had a good time, well…I did until I got up close and personal with the ice. Em and her friend definitely had a blast skating – she has missed out on so much over the past 5 years: skating and hanging out with friends and birthday parties, so it was sort of amazing to have her able to do this. I definitely had my reservations about letting her skate, but, in retrospect, I am glad we did. To forbid such things, when she wants to do them and believes she can, would be to remove not only the chance to determine her own boundaries and limitations but it would also take away some very basic part of life that she should be allowed to experience while she can.

 

 

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