"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘family’

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)

 

 

 

 

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Everything else that we are dealing with…

So much has happened in such a short time, I can hardly remember what I have posted about and what I put off for later. In addition to the lumbar puncture, the blood patch, the ongoing high pressure issues and the likely CSF leaks, Em has been dealing with a concussion and that injured rotator cuff and, of course, what we presume to be CRPS.

Shoulder Injury

PT dismissed her because she was struggling intensely with the most basic exercises she was given. At the time, we were suspecting that her neck had become unstable and that was a big concern – for some reason people get a little jumpy when you mention her neck is unstable! Fortunately, a lot of the issues that we assumed were down to instability eased up when they did the lumbar puncture, easing the high pressure.

So, the plan was, talk to the specialists at Cinci and wait and see. In the meantime, her neck is better and  she has been able to gain a lot more use of her shoulder and is out of the sling. At this point, we will just carry on and hope the shoulder doesn’t get reinjured. In a perfect world, we would be able to focus our energy on her shoulder but, as we are far from a perfect world, there are too many other things to worry about. Sadly, since it seems to be improving, her shoulder is low on the list of priorities at the moment. I am just glad she has use and motion back and has less pain.

Concussion

She is doing better, but still not well. I think I mentioned that she fell and hit her head (again) on the 9th, which worsened the memory loss and balance problems. That was a little scary, to be honest but the doctor felt like the second injury should not have been enough to cause any damage and waiting it out was the thing to do. We have just made it a priority to protect her head as much as possible and keep her safe until she is steady again. Some of our precautions she doesn’t particularly appreciate, but protecting her brain is non-negotiable.

Her balance has improved from what it was after bumping her head that second time, but it is still not great. She is using her wheelchair when we are out in public. That is frustrating for her, but, I can tell you that I am so grateful we have that wheelchair in times like this.

She has started speech therapy to help rehab her brain. She had her second visit yesterday and will go again tomorrow. Her memory loss is better – she is able to recall details much better than before – but she is still incredibly frustrated when she is searching for a word and just can’t pull it up. And she is bemused at what her brain does recall and at how odd it feels to not know she knows something until she suddenly remembers.

Right now, we are still being guided by her symptoms – she can do the speech exercises in varying chunks of time before she starts hurting. Sometimes she can go straight through for a considerable length of time before her head starts hurting and other times she hits the wall sooner. This week she is going to write answers on a worksheet with various questions and we will see how that goes. She had a disconcerting time a couple days after the second bump when she realized that her brain was sort of disconnected to the actual process of writing. She said it felt like a reflex but that her brain wasn’t really doing it.

We go back to the concussion doctor on the 5th and she will have neuropsych testing done. I think she is definitely better  and continuing to improve: we are all happy with the progress she is making, but this is all new ground for us and it will be good to have knowledgeable eyes on her.

She did sit in her room and play her guitar a couple days ago and that was a wonderful sound. It has been a while and she is just now getting to the point of being able to remember the cords and lyrics that once came so easily to her. Music is such a part of her life – being able to play again is a huge morale boost.

CRPS

Way back at the beginning of December, we saw the pain doctor and emphatically expressed our need for help. (Sort of a comin’ to Jesus type event.) Bless him, he spent an hour with us on a day we weren’t even scheduled to see him and his waiting room was packed.

Anyway, I had taken in a referral form for a doctor I wanted him to send us to – a neurologist specializing in neuromuscular diseases at OSU medical center. I had filled the form out as fully as I could (and told them what to put in the lines they needed to fill out) in the hopes that there would be no excuse to not promptly refer us. It did take a polite reminder but they did eventually get us referred. Honestly, I wasn’t even sure if this doctor would see Em since she is 17 so it was a shot in the dark. His office called to ask some questions and clarify the situation and to inform us that he normally wouldn’t see anyone under 18 but that he would consider it.

Thankfully, he is willing to see her and we see him on the 15th of March. I am cautiously optimistic that he will be helpful in giving her a diagnosis and figuring all of this out. Recently, her lab results got a little more complicated and it is doubly good that we are going to him – I will get to that issue in a just a minute. I hear he is very smart and very kind so I believe we are on the right track and I am beyond grateful he is willing to see her.

New Diagnoses

Em has had a ton of labs done – between the CSF testing from the lumbar puncture and the blood work that has been done – we have at least been able to look at a lot of things that can be ruled out or addressed. We saw the neurologist last week and I was not surprised to hear him say Em is beyond him and needs someone with more knowledge than he has. He has absolutely done right by her for 4 years, so that was a little emotional. He will be available if we need him, but we need to get somewhere with more knowledge.

He was concerned – not overly but said it needs to be looked at – with one of her labs. The one test shows some markers for MS. She has three bands and four indicate MS. Now, he doesn’t think she has MS and I don’t think she has MS. I just think her entire nervous system is on fire and there is nothing at all conclusive about that test in regards to an MS diagnosis. However, she needs to be evaluated by someone who can handle all of her complexities. Fortunately, we already have an appointment with a doctor specializing in neuromuscular disease. That is exactly where we need to be and I doubt we would be able to get a sooner appointment anywhere. So, it all seems a bit Providential when I look at it.

Also, the doctor ordered an additional blood test which has come back elevated, indicating Sarcadosis. Am I surprised that at this point she is showing signs of an autoimmune issue? Not at all. Truly, I am just surprised she hasn’t shown any autoimmune signs previously. Again, and almost as always, she has enough symptoms that sort of tick the boxes for one thing but that also overlap with about a dozen other things. So, who knows. She also had a lung x-ray and we are being referred to a pulmonologist. Again,  I am not getting too worked up about this – if it is sarcadosis, it is treatable. If it isn’t, the symptoms (which, if they exist, are being masked by everything else that is going on) are certainly explained by everything else she is dealing with.

ER Complaints

We have taken our complaints about the whole lumbar puncture/ blood patch/ ER/ latex exposure debacle to administration and we are, fortunately, being taken seriously. So far, profuse apologies and some ideas on how to make sure this never happens again – not to us or anyone else – have been offered. I am not going into details right now, because this is, after all, my husband’s employer, and I want to tread lightly but suffice it to say they are doing right by us and I think we will be satisfied by the time it is all done. I am very hopeful that this will be an opportunity to share awareness about Emily’s rare conditions and help foster an atmosphere that better understands how to treat complex, chronic illness. Which, in the end, is what matters to us.

One Last Thing

Finally, I would like to ask for your prayers for my mom. She has been diagnosed with breast cancer and will be having a mastectomy in the near future. But, she has great doctors and her prognosis is good, so, even though this is a blow, we have faith that this is all going to be ok.

 

So those are the highlights from our crazy life right now. If it all sounds exhausting, it is! But, we are hanging in there and trying to keeping our sanity intact.

 

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.

Complex Child Article

I have been quiet on here but our life is not at the moment. If that sounds slightly ominous, that is because it pretty much is. *Sigh* I will go into detail soon…

I have several posts I need to write and get up in the near future, but I want to take a few minutes and share this exciting (to me at least) information now. I recently wrote an article for the Complex Child E Magazine that was published in this month’s edition. The September edition is Bone, Muscles and Joints and that seemed a perfect opportunity to share info about EDS and raise some awareness. The article is basic information about EDS and explains why early diagnosis is so important. My goal was to pack as much detail about EDS in as possible so anyone who was not familiar with it would come away informed and more likely to connect the dots.

I had never heard of this website previously, but I am glad I have and I am happy to share it here as a useful resource. I think it is a great resource for parents of medically complex kids – there are many articles there by parents and even by kids themselves. Lots of great information  and I encourage you to take a look at the many helpful articles there. And, I would also encourage you to consider writing your own article and submitting for inclusion in a future edition. (The editor, Susan, was a pleasure to work with so don’t be intimidated!)

So, please go have a look at my article: Living with Ehlers Danlos Syndrome but do make sure you read the whole edition as well and check out their archives of previous articles.

I hope you enjoy it and I feel fortunate to have had the opportunity to have educated others about EDS! If you want to come back and leave a comment with feedback about the article, that would be awesome!

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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