One Bathroom Please

When we were first looking to buy a house one of my main wish list items was 2 bathrooms.  It was ok if one was full and the other was half.  We just really felt with a growing family we needed 2 bathrooms.  And I have to tell you over the years of being here we wish for that 2nd bathroom often!  But of course that has never been a high priority item to add.  So we deal, and I mutter (sometimes) until now!  For the past few months I have had some amazing ladies come and clean our bathroom.  It has helped me so much because the up and down motion of cleaning makes me very ill.  I have wiped up the bathroom and cleaned different parts of it, but not scrubbed the floor.  I let them do this.  I was feeling really bad about this...I mean I should be able to scrub my own bathroom floor by now!  So on Saturday I did.  It was not a pretty site.  I managed to get it all scrubbed (which our bath is pretty tiny so that is not saying much). I felt this horrible whish in my head and blackness.  I knew I was going to faint.  I laid down right there on my clean bathroom floor.  The smell of vinegar making me even more ill.  As I lay there I prayed, "Thank you Lord for one bathroom!"

I have to be honest over the past few years we have thanked God for some pretty odd things.  We have also learned to be grateful where we are, and the little moments.  Oh I know I still grumble when I shouldn't, but the grumble quickly fades as I see little beauties all around me.  Where I still struggle a bit on my walk is with trust.  I still have this burning desire to control everything in my life.  It is hard for me to release my firm grip on this area of life.  I want to know tomorrow I can pay that pesky bill, I can buy diaps and groceries, we can put gas in the tank, and I will not have to cancel another doc appointment for lack of funds.  I want to be able to wake up with no horrible pain coursing through my body.  And my kids to wake up feeling good and healthy.  I want to know my hubby is secure in his job, and that today will not be the day the wall in the basement comes crumbling in.  But nothing is an assurance.  And just like yesterday and today, tomorrow will come and I will face it.  And once again God will remind me He has it covered.  I just need to sit back and learn to love the moments.

A few prayer request....I have been spiraling a bit with pain.  My neck and head give me fits most days of the week.  And my poor joints feel as if they are on fire.  I am so hoping to get some answers when we head to New York in June.  Poor Aidan is plagued by headaches daily.  He is also having trouble with his hip and shoulder popping out of joint.  For a 9 year old boy, he has the aches and pains of an 80 year old.  Please pray that he has some relief, and I remain patient as he works through how to deal.  Our sweet bug is horrible again.  We are not sure what is going on but her headaches are back with a vengeance   She cries almost every night.  She is also spiking fevers lately. Probably just viral but still make me nervous.  Sadly our little Chan is complaining of headaches.  I would think it was because he heard everyone around him complain but he cries and normally just needs to be held until he falls asleep.  So I know something is going on.  My heart breaks and I do not even know how to handle the possibility of a 3rd child with Chiari or EDS.  And if you could pray for my wonderful hubby!  This amazing man carries the weight of supporting not a normal fam, but a very sick fam on his shoulders.  He never complains, but I see sadness sometimes in his eyes.  I want to help...fix it but most days my strength is reserved for the basics of life.  I know God chose him for us perfectly.  Not to many guys could handle the heart ache he endures daily seeing his family suffer.

People praying is what makes my heart happy!  When people tell me they pray for us, it reminds me we are not alone and I do have the strength to keep fighting this fight!  So thank you!

Living with Ehlors Danlos

This morning I read this post a friend had put on facebook. It is a letter a person wrote about living Ehlors Danlos Syndrome(EDS).  Aidan and I both suffer from this condition.  The letter explains so well my life.  The true author of the letter is unknown.  But I read it here.  I wanted to post it on my blog to give others an understanding of this daily battle.  Please as you read find compassion for those with chronic illness.  Sometimes we have to sit out from life, and one of the hardest parts is others becoming upset with us for that.  I really can't word it any better....

Open Letter to Those Without Ehlers-Danlos Syndrome;

Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...

... These are the things that I would like you to understand about me before you judge me...

I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.

Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (EDS is genetic, this means I have had it since birth (even if I was only diagnosed recently, I have been suffering from this since I was born)). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS (and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

I want you to know that the pain and instability etc from EDS moves around. Please don't attack me when I'm worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to EVERYTHING that I do.Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it then, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. EDS does not forgive its victims easily.

Please understand that I can't spend all of my energy trying to get well from EDS; it is incurable (and genetic, so unless I can change my gene’s I cannot change my disease/disorder). With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.

As you can see EDS really sucks...

Finally, please remember that I am the same person I was before I was diagnosed with (started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

But most importantly, I need you to understand me.

Written by Michael"

Let's Give Peace a Try

As I read the news reports telling us the last suspect in the terrorist attack on Boston was apprehended, I breathe a sigh of relief.  But honestly as many others are feeling, I am still sad. I struggle to understand how a heart can become so wicked.  How two young men could harbor such hate.  Did they need more love, more understanding, someone to reach out to them?  It makes me sad to think any human would feel taking another human life is valid, ok.  My mind trails off to other things that have happened over the past months.  Friends comments about the world becoming more evil.  People saying "How could this happen?"  And then I am reminded these things happen every day!  Every day there is heart ache and sadness.

I think for many we struggle with the attacks that have happened recently because they hit close to home.  It shakes us to think: "It could have been me!  It could have been my child!"  We wrestle with the idea our world may not be as safe as we thought.  Part of us want to shelter our children, hide away.  Some of us may use social media as a way to express our feelings.  Many may be outraged their was an attack on the USA. When I find myself thinking this way I want to slap my own face!  I want to knock some sense back into my mind.  Yes it is awful...but any less awful than the mom screaming as her child steps on a land mine? Any less awful than the 11 year old who is forced into the sex trade?  Any more awful than the cozy little babe growing in their mama and then being ripped out?  Any more awful than the homeless man who served our country and now lays shivering on a street corner?  Any more awful than living in a country where every day you have fear to walk out your front door?  That mama cradling her baby in the mine field is as much my sister as anyone. How can we forget they need us too? My heart aches....every moment of every day another soul is being tormented.

Now I know life should not be about dwelling on all the bad.  But shouldn't it be a little more on how we can lift others up?  Should we not be reminded this freedom we enjoy is a blessing?  I mean seriously taking a walk with your children should be a right for everyone.  Every child should feel love and warmth.  Children should be able to play ball without fear of losing a limb, or worse a life.  Young boys and girls should never ever have to live the hell of being a sex slave.  No babe should be called a babe by one mama and a mass of tissue by another.  Does this not make anyone else angry?  I hope so!  I pray so!  We are to have Hope, Joy, and Love.  But it should be something we share...spread...not hold on to for ourselves.  When I doubt this, when my heart longs comfort, I just look to all those who have denied it.  They are the ones who live life to the fullest along with those they comfort.

I pray this post makes people think...pause.  How can you help?  How can you bring hope, joy, and love to others?  Can you feed a hungry soldier?  Can you wipe the tears of a scared pregnant mama?  Can you pray desperately for war torn countries and their beautiful citizens?  Can you sponsor a child half way around the world?  Can you fight against human trafficking?  Can you be the light in the dark?  I hope as the headlines die down over Boston, Texas, and so many other tragedies  our hearts still burn for change. We can do something...we can remember.  We can find something we are passionate about and fight for it.  I pray we can deny ourselves to help our neighbor live.

Community

I truly believe in the saying "It takes a village to raise a child."  I also strongly believe in community.  This week we saw our little community in action!  Tim was admitted to the hospital late Wednesday night.  He had a raging headache, lots of pain and swelling in his face, and was having trouble walking.  We had no idea what was wrong, and neither did the docs.  They thought it might be an abscess on his tooth that had spread to his sinuses and possibly brain.  Of course we were very nervous about this.  They started him on 3 heavy antibiotics and pain meds right away. Thursday was miserable for him.  But thankfully by Friday he was turning around.  They released him on Saturday.  Even as they were releasing him no one knew what was wrong.  The Dental Surgeon said it was not an abscess and the Neurologist felt his brain was fine.

What blows my mind is how our little community made our 3 days in the hospital easier!  My parents, as always,were amazing!  They took the kids without a second thought.  They ran and put money in our bank account because they know we are literally pay check to pay check.  I had lunch delivered by an amazing friend who should have been home resting in her own bed!  She sat and talked to me in the Mercy waiting room as only kindred spirits can do.  I had another friend show up with Dr pepper, Starbucks and magazines for me.  We stayed up chatting as we always do!  Another friend helped my mom by giving her a break from the kiddos.  And yet another friend texted me to say she was coming to pick up Ranger so he would not be cooped up in a kennel.  Amazing!!!  Then hundreds of people prayed and prayed!  Even though we were not sure what was going on, we took comfort in all these things!

Tim and I have decided retirement, kids college funds, and cool family trips are not in our future.  But we marvel at the awesomeness of our lives!!!  We had long hours to chat and joke with each other in the hospital.  We shared several meals together and held hands. We remembered the importance of our marriage and just being together.  Just loving the moments even the really bad ones.  Seeing how we are loved and cared for by our community is heart warming and humbling.  It causes me to look to my Father and know He has covered us in His Love.  Even in the moments that seem impossible (like sleeping in a hospital recliner with no pillow after having neck fusion 6 months ago) He gives us the strength to push forward!  I am constantly amazed!