Wednesday, June 27, 2012
I'm in bed today. I cannot sit in a chair or on the couch without horrible pain in my lower back. My right knee is screaming. My shoulders, elbows, wrists and fingers are throbbing. I could go on and on. Really, every part of my body is crying out. I could not sleep last night even though I swallowed my usual cocktail of meds to sledgehammer me into oblivion. I have already taken a narcotic this morning, something I usually reserve for much later in the day.
Wednesday, June 27th, I will be still.
My dear friend Bethany sent me this verse recently. I have been reciting it over and over in my head, and it has brought me much peace and comfort as I continually face deeper surrender to this life.
"The LORD will fight for you; you need only to be still." Ex 14:14
The old Monica would be pushing through this pain to somehow be orchestrating an escape. I would be writing emails and making phone calls and combing craigslist for rentals, all of which are sketchy and none of which we can afford. I would be calling SummaCare about appeals. I would be calling creditors about the bills that came in over the past two weeks. All of them are money we owe AFTER insurance has paid their part. The numbers would be racing through my head. ( . . . $1,625.00 Southern Maryland Anesthesia. $1,159 Midatlantic Urology. $867.00 Diagnostic Imaging. $1,244.88 Diagnostic Imaging. $6,837.43 Doctors Community Hospital . . .) I would be looking at the calendar and struggling with four new appointments in July in Cincinnati for Danica and I, new hotel reservations, child care for Laney while we are gone and worrying about how Dan is out of days off, and still I cannot do this without him. I would definitely be praying to God but would never stop furiously rowing to shore (even though my shoulders and elbows and wrists and fingers would sublux on each and every pull.)
There has been a heart change. There has been a rearranging of my mind. It is not because I am more broken. It is because I am being healed. Because of God's grace, I am able to face a long day like today and not wish I was at the pool or the park or the zoo with my girls. I understand they are not forever scarred because most of the world moves around us doing and doing, and we are here being. Danica pretends in her room with her stuffed animals while listening to music. Delaney plays the piano on the ipad. It doesn't make me sad we don't have a real piano even though she truly has an ear for music. It doesn't make me feel guilty that I will most likely never be able to shuttle her to and from lessons that would nurture her talents. I believe this still life is a portal into God's plan for both my girls. There is sadness. There is loss. But we are finally seeing it with new eyes.
" . . . Such a man will not be overthrown by evil circumstances. God's constant care of him will make a deep impression on all who see it. He does not fear bad news, nor live in dread of what may happen. For he is settled in his mind that Jehovah will take care of him. That is why he is not afraid, but can calmly face his foes." Psalm 112:6-8
I had such an uplifting phone call with a friend yesterday. As I was sharing my honest heart I realized something huge. I do not need an ativan any longer to be calm. I am not afraid of the potential damage of staying here in this basement. I am not in dread of getting sicker because there will be no deliverance. I read back through the years of posts here, our story, and over and over Jehovah has taken care of us. I am settled in my mind He will do this now. In His time through His constant care He will bing Himself the most glory and make a deep impression on all those who are watching. Until then, I will be still. He is fighting for us. Behind the scenes He is moving and working to make the way. He is orchestrating. Today I can rest.
(Thanks cousin Amy for sharing this great link of 40 ways to entertain your kids while in bed. I know lots of my zebra sisters and spoonie friends will appreciate this or maybe even healthy moms who just need to lie down!)
Posted by Monica Kaye at 11:03 AM
Monday, June 25, 2012
I'm sitting here in my special momma "NEST" chair finally having my first cup of coffee for the day. The sun is setting behind this idyllic neighborhood. It's the same chair I sat in hour after hour, day after day, month after month looking for answers for my Danica. How much time did I spend reading research, reaching out to Chiari moms, blogging, praying, weeping, wailing and pleading for God's direction in the heaviest of decisions we've ever had to make in our lives? God brought my angel, Pam, through the internet into my heart at the perfect time, and she lifted me up and listened and shared what she knew. I looked back at our facebook history of private messages tonight. There are one hundred forty-seven. There are many emails too. There are long phone calls and laughing and crying. There are cards of encouragement and little gifts. She is the one who listened last weekend when I finally broke down about living here and how sick I really feel. She sends me messages to download and listen to. She send me songs to remind me to worship. She speaks Truth wrapped in the compassion and courage of our Savior. Yes, I am active in the body of Christ, and this is my sister.
Pam has a daughter with Chiari as well. She has been decompressed and had tethered cord surgery and will most likely eventually need to be fused because she too has EDS and suffers instability. Two years ago today Pam had her decompression and fusion with Dr. Henderson. This was followed by her own tethered cord surgery. Our bodies and our stories read like we are twins. It was dear Pam who gently encouraged me when reading on the blog about how much pain I was in to be brave enough to look deeper than a fibromyalgia diagnosis. It was Pam who took me straight to Dr. Henderson, my hero. It was Pam who encouraged me when I thought I could not do the second surgery to keep the faith.
Just like Pam has been a mentor, friend and sister to me, she has had one of these women in her life. When I posted for "Kind and Brave" nominations it was no surprise she would submit Kristin. This is not a journey we could take alone. It is not a walk many can stay the distance for along side us. We cling to one another as we crawl out of bed to make it through another day, fight for a better future for our children who have inherited our diseases, pray for one another in the specifics only we could know or understand about how hard and painful this path is. We also share the sharp beauty that is only appreciated when you have lost so much and still unexplainably know for sure you are richer, wiser, kinder and more sure than ever this is not in vain. I know I will run the streets of gold in perfect bodies with these two ladies. I wonder if Heaven will be just a little sweeter for those of us who are so broken here?
Thank you Pam and Kristin for blazing trails for me. I love you. Thank you Pam for this nomination.
Several people immediately came into mind, when given the opportunity to nominate a person who demonstrates kindness and/or bravery for the giveaway. To try and choose just one of them, became a very difficult task for me. I struggled for days, trying to narrow down my list. Many people have touched my life through random acts of kindness or by personifying bravery. It was so hard to choose just one person.
Today, I am nominating a friend, fellow patient, mother, advocate, and a person who always has a smile on her face, while she continues to lift up others, even when life knocks her down. Always staying positive, reaching out to those who need a pep talk or advice, raising awareness and educating about medical conditions, taking care of sick children day in and day out, while she herself is sick... are just a few of the qualities that I admire in Kristin Means. Kristin is clearly a person who has learned to "dance in the rain," through it all.
Sixteen surgeries later and Kristin is still cracking jokes and making people laugh through it all. She can put a smile on anyone's face. Kristin battles the devastating effects of Chiari Malformation and Ehlers Danlos Syndrome daily. There is no cure for either condition and both are progressive and degenerative. Her sweet boys have these conditions also. Many people are fighting illnesses themselves, or have children who are battling medical conditions...but to be both a patient and mother of two sick children, takes things to a whole different level. We all have our crosses to bear in life, but to do what Kristin does every day with such grace, patience and kindness, touches my heart and soul. To choose to wear a smile, when it would be so much easier to wear a frown, is not an easy thing to do.
Having Kristin in my life, makes me want to be a better mother, friend, wife and all around better person. She may not know this...but I look up to her (even though she is much younger than me). Kristin doesn't complain, when she has every reason to. She doesn't feel sorry for herself or ever ask "Why me?" She smiles through the pain and reaches out to others who are hurting. She is very thoughtful, caring and giving...and truly one of the bravest people that I know.
We have a choice every day when we wake up. It is often easy to give up and feel defeated before the day even begins. The choice to remain brave, when you know that something is lurking around every corner when it comes to your health and your children's is beyond admirable. Always showing kindness and truly caring about others, while facing your own trials, is just another reason why I would love for Kristin to be the recipient of the Kind and Brave Giveaway. Kristin is a huge blessing in my life!
PLEASE take the time to watch this video of Kristin sharing her journey and what life is like with EDS and accompanying conditions. I hope in my lifetime people will respond with more compassion and understanding to beautiful women like us who look "fine" and are truly so sick and struggling. Today I had the same anesthesiolgist for my colonoscopy as I did for my endoscopy. He said after our last meeting he went home and researched EDS and connective tissue disorders. These are small victories for us who seek to be heard and understood.
Posted by Monica Kaye at 8:27 PM
Saturday, June 23, 2012
"Nothing heals us like letting people know our scariest parts: When people listen to you cry and lament, and look at you with love, it's like they are holding the baby of you." Anne Lamott
I've had two big medical trips since I've posted about anything health related. I know the details of these trips help you understand how challending our life is, and also the things I learn from the specialists prove helpful to those of you on a similar journey at different stages or without the access to the care I have received. It's difficult for me to explain, even after all these years of doing this, how much these trips and appointments take from me physically and emotionally and spiritually. They are just plain hard. Today I'm just going to write about what three specialists have not just recommended but prescribed for me or they believe I will continue to get sicker and sicker. (I will post about Danica's Cincinnati appointments in the next day or so with pictures, because I know you never tire of watching this amazing girl's brave journey.)
I was diagnosed with a severe mold allergy in addition to other environmental allergies for the first time when Delaney was a baby. Dan and I lived in a new construction home in Rittman, Ohio. It was built on farm land and faced a gorgeous horse farm. I got sicker than I had ever been. One day I went out front to plant some bulbs. The wind was blowing the "right" way, and I was digging dirt and touching bulbs, and it became harder and harder to breathe. I fell down on the sidewalk just as I was slipping into blackness. This episode prompted the testing, allergy medication, an inhaler and realization that most likely it was not just the outdoor triggers but the new construction making me so ill. When we went to sell the house we also found very high radon levels there. (New construction homes are not required to have radon inspection paid for by the builder upon closing. If you ever buy one I highly suggest you ask for this in your contract or pay yourself to have it done, particularly if there is not a mitigation system in the basement or crawlspace.)
When you trace our history with homes you can see how I always felt better in the "older" houses we lived in and also those with hard wood floors. These were the periods when I was able to work, ramp back up my career and live the most pain free. These homes were also in established neighborhoods in more urban settings so my body was not dealing with the outdoor triggers of just developed farm land or the indoor triggers of new drywall, carpet, floor stain, etc. This is one of the things a good allergist will help you do. Before they get out a prescription pad they will ask the right questions and listen. I was lucky enough to see such a doctor in May. He confirmed what I knew in my heart to be true. Living in this beautiful lower level of a new construction home built on what was farm land could be perfectly healthy for some but for me it is a recipe for continuous sickness and decline. Add to this my other serious conditions, and it offers little hope for true healing.
When you say the word "mold" to people they think of Extreme Home Makeover kind of mold visibly growing on walls and ceilings. Truly, three quarters of this space we live in is like a cave. It is a recipe for mold spores to grow. I have such a severe sensitivity I can "smell" it all the time. Somedays it makes me feel bipolar. I smell it in ice cubes and water from my parent's fridge. I became so sick in the bathroom I reduced showering to once or twice a week. Dan keeps his clothes in an unfinished room in the house, and when he was near me I felt like he had mold on his clothes. Delaney's room has no window either and does not even have airconditioning or heating vents. It is so humid in there and always smells strange to me. Danica has the one bedroom with a half window. For some reason I felt the sickest in this room. Over the last weeks I have gotten so crazy about getting people to believe me I had Dan take the pipes in the bathroom and kitchen apart. They were caked with black mold. I also realized the downstairs plumbing is venting through a return air vent near the ceiling into Danica's room. Every night when I would go into her room and shut the doors to tuck her in my face would get burning hit and red and my POTS would flare. I had been telling Dan for months there was something in her room in particular making me sick. It doesn't matter that it's allowed by code or really only suppose to open and suck air in not leak stuff out. I know it's making me sick.
We have used an enzyme to try to get the black stuff in the pipes. My parents have offered their upstairs bedroom to Dan and I which would leave our girls and the dog down here with them. Quite frankly, Our family cannot be separated again. We just won't survive it. We have a routine. We have a joy that comes only when we are hiding away together. The stress of living with two other families here is already great anough without shuffling the cards. We've talked about getting a sleeper sofa and Dan and I sleeping out here in the room with two windows. We've talked about if we could somehow get rid of the carpet and put down hardwood. Every possible scenario seems to only be a stop gap that may not even work at all. Bottom line from all my doctors. YOU CANNOT LIVE IN A BASEMENT. If you remain there you WILL suffer permanent pulmonary and gastrointestinal damage. PERMANENT.
When we made the very painful decision to move here last June we had no idea about my Chiari, Ehlers Danlos, instability, etc. We thought this was a one year plan. I thought I would be working again, Danica would be in school, and we would be back in our own home. If you are a regular reader you know I have wrestled with God about living here more than even my own health issues. Dan and I feel completely defeated. Why would God put us in this impossible situation after providing for us and leading us like He has? We literally do not see a way to move out. Even if we found a one bedroom apartment we could eek to afford the environment would likely be as bad if not worse than here. I cannot live next to a smoker. I cannot have old carpet with mold and dust mites in it. We have to have Twixie. She is the only thing somedays that keeps Laney believing in life. She is like our child now. We could not suffer to lose her.
This is the truth about why I cannot get well. Friends, if you have ever prayed for us. If you have ever pleaded with God to show His faithfulness and mercy and undeserved merit to Dan and I and our sweet girls, would you please get on your knees and beg Him for a way of escape for us now?
I am broken. I am full of grief. I feel far from the God who I know without a doubt loves me and already has provided an answer. I should be praising Him today. Instead I am crying and praying and singing this . . . over and over and over.
RESTORE TO ME THE JOY OF YOUR SALVATION.
RESTORE TO ME THE WONDERS OF YOUR LOVE.
Jesus looked at them and said, "With man this is impossible, but with God all things are possible." Matthew 19:26
Posted by Monica Kaye at 11:58 AM
Sunday, June 17, 2012
I worked on a post today trying to finally spit it out and just tell the truth about why I am getting sicker and how impossible our life seems right now. I can't say it.
I have been asked more and more recently about what my connective tissue disorder, Ehlers Danlos Syndrome, is and also, in some comical and sometimes insulting ways, why I don't look that sick at all but have a handicapped tag and can barely get out of bed somedays. I have read so much research on EDS. I have watched as many symposiums as I can. I have searched for a way to simply explain something so complicated to people who care.
Maxim magazine, a pretty filthy men's magazine, recently published a stupid article titled, "Four Diseases We wouldn't Mind Having." Can you imagine? I won't link to them in any way but trust me, it created rage among the EDS community to have our disease not only made fun of but so grossly misrepresented. The backlash of our "rare" zebra community was so strong they agreed to participate in Ehlers Danlos Awareness month and printed the following VERY informative follow up. So, if you have ever wondered what all the hub bub is and why I will forever be a zebra please read, and if you know someone with any of these symptoms, and particularly someone who has been suffering with fibromyalgia for years with no relief from treatment, please share. The statistics of fibro sufferers who are really zebras is fifty percent!
We quickly learned that Ehlers Danlos Syndrome isn’t fun, funny or desirable. But we still needed to find out what the condition actually is, and what makes it the invisible killer. Now we’re very scared...and informed.
Eugene Wilson of the Center For the Ehlers Danlos Syndrome Alliance was kind enough to walk us through the condition and help show us just what complete idiots we were. And sadly, we’re not the only ones in the dark about EDS.
What Is EDS?
EUGENE WILSON: It’s complicated. Put simply, EDS is a collagen deficiency, which is the glue of the body. An EDS patient has difficulty making the collagen. The loose-connective tissue is faulty. But EDS is not just muscular and skeletal. It’s not just in the joints. It’s not just the muscles being hyper-elastic. You can have vision problems. It leads to heart problems. It leads to brain problems. You have some kids that can’t walk. They can’t even move.
How Bad Can it Get?
There are six main types, and people who suffer from the first three types may only have hyper-flexibility and loose skin. But type IV get worse. Type IV is Vascular EDS. People with Type IV know they’re walking a thin line each and every day. They never know if they’re going to wake up the next morning. Kids who are 13, 14, 15 years old are dying from this. Those with Type IV have a life expectancy of 48.
Why Isn’t This Well Known?
There’s a lot of bad information out there. Even some people in the medical field fail to recognize EDS. There’s misinformation and miscommunication. I can take a child with EDS to four different geneticists and all four of them will come up with different answers. Testing for EDS is currently only 30-40% accurate. The medical community needs to step up and realize what’s happening. Right now, it’s been reported that 1 in 1,500 people have EDS. I think that number is closer to 1 in 800. That’s why we need to raise awareness. People need to know.
What Are the Symptoms?
You could start with being double-jointed. If you look at someone and they have a crooked nose and they’ve never been in a fight, that’s a deviated septum, and that’s one sign of EDS. You see someone standing by a counter and their ankles are rolled onto the outside face? That’s another sign they have EDS. If you watch a person write, and their fingers bend backwards, not so much the thumb, but the fingers, that’s another sign. If you’re having unusual pains, but getting a lot of false-negative x-rays and MRIs, you could have EDS. There’s a lot of little clues, some of them almost invisible.
Maxim Is Better Than House (at least)
People heard the voicemail and asked how I kept my composure. But getting mad at you guys would have done more harm than good. At least you called back. There was an episode of House that focused on EDS. It was horrible. It was about a girl who had several miscarriages and some pain and then she became a hoarder. And then House walked in and diagnosed her as EDS. Hoarding doesn’t have anything to do with EDS.
Is This Piano Video Sending the Wrong Message? (A guy who plays the piano backwards because his arms are so hypermobile.)
For me? Any kind of awareness is great. I don’t want people to see that video and say, “Hey, if that person can do that, it’s perfectly fine for me to do the same thing.” If you do that, you’re tearing up your joints faster than you needed to.
There’s a lot of bad, bad information out there. Some don’t like what Stan Lee has done on his show Stan Lee’s Superhumans. There’s a man with EDS on the show who has elastic skin. What people don’t understand is that that man is fortunate enough to not be suffering in the severe pain that other EDS patients suffer.
EDS affects every person differently. I can show you 15 people in the same room, you look at every single one of them, and none of them look sick, but each one has a different severity of pain, and that pain has affected their life in a different way.
Any Hope for a Cure?
There’s a lot of research starting to come through. Most of it has been research in the Vascular EDS, and I can understand that. They’re trying to stop loss of life. You’re looking at nanomedicine. You basically take a pill and little micro-robotic things will fix your body. How does that work? I’m not sure. But there’s the hope. In Texas there’s a research project about new medication for Vascular EDS. Unfortunately our government takes their sweet ol’ time to get any medication on the market. In Europe there’s already some medication available. There is hope. Until we get there, it’ll take much more knowledge in the medical field, and we need to know how many people have EDS and get the right diagnosis on these people.
Why Are Doctors in the Dark?
A lot of it goes back to the med schools. I’ve spoken to doctors who said that in med school, they only had six days or a few weeks of studying all the connective tissue conditions...not just EDS. All of them. If the doctor never sees it again after they come out of school, and then a patient comes to the doctor 15 years later, the odds that the doctor will remember everything about that condition are slim to none.
My son’s doctor had him on the exam table bent up like a pretzel, but never diagnosed him. Finally it took a muscular neurologist to diagnose my son. We need more connective tissue labs and clinics all around the United States. We’d like magazines and media like Maxim to help promote awareness.
Why The Zebra Mascot?
“Zebra” is a medical term for rare or difficult to diagnose diseases. There’s the old saying, “When you hear hoofbeats behind you, you don’t expect to see a zebra.” But we’re flipping it. If you hear hoofbeats, think of Zebras.
For more information on the condition and to find out how you can help, check out The Center for Ehlers Danlos Syndrome Alliance. Be sure to check out the proposed legislation that would help make more people aware of the condition.
Posted by Monica Kaye at 10:42 PM
I'm almost ready to talk about some big things God is revealing to us about my health that quite honestly have sent me into an R.E.M. "Losing My Religion" kind of crisis of faith. Part of this new information has prompted me to run my own little experiments of sort with my energy and reactions to environment and other triggers. As silly as it sounds I need to convince myself one more time this is not psychological in any way. Also, selfishly, just once in awhile, I want to open the same gifts most of you get to every day no matter how much I will pay tomorrow. I want to remember the simple surprises God gives to us over and over again that I have not seen in so very long because I have been here in this room and in this bed for almost a year now.
Leigh McLeroy writes, "We prevent God from giving us the great spiritual gifts He has in store for us, because we do not give thanks for daily gifts. We think we dare not be satisfied with the small measure of spiritual knowledge, experience, and love that has been given to us, and that we must constantly be looking forward eagerly for the highest good. Then we deplore the fact that we lack the deep certainty, the strong faith, and the rich experience that God has given to others, and we consider this lament to be pious. We pray for the big things and forget to give thanks for the ordinary, small (and yet really not small) gifts."
Tonight I am getting on my knees (closer to walking on glass these days since my right one always subluxes) while my family sleeps and praying for really big impossible things. But first I'll be giving thanks for today's gifts and the eyes and heart to see them.
God is good. Life is good. Today I didn't have to fake it.
My empty pot finally has flowers thanks to my gardening momma. Things between us have been strained. This act of love reminded me of one of my cardinal relationship rules based on the Grace of God. MEET PEOPLE WHERE THEY ARE.
My mom has a rose bush for each of her children and grandchildren. Mine has always been a red rose. This year my bush is sick and needs moved. You can tell from the leaves, and we had to prune it way back to get rid of the ick. Still, a beautiful blossom that holds my truth.
My grandma Wishart is eighty-nine years old. My mom and I inherited the love for gardening and much of our knowledge about plants from her. I don't thank God enough for the blessing of knowing her in this season.
In my former life I always kept champagne in the fridge for celebrating every day kind of miracles. I read recently it is the number one anaphalaxis causing food or beverage. Top that with my favorite, a fresh strawberry, a new allergy of mine, and here comes trouble. Still, I enjoyed every drop even though I felt very sick afterward. This was definitely a test I failed.
My Dani J. . . Dreaming.
Our husband and father of the year . . . EVERY year. I caught him dreaming too.
My Laney Jayne and her sidekick, Twixie. LOVE.
This last picture is a little Disney sign with a quote from Cinderella,
"Even miracles take a little time."
The four painted rocks represent our family. If you read here regularly you know I have a thing with rocks, especially ones with words or symbols on them. Dan painted me the one with the orange cross just this week. It's a perfect prayer rock and reminds me of the greatest miracle of all, my Savior.
There are no small gifts and "even miracles take a little time."
Our hope remains.
Posted by Monica Kaye at 12:39 AM
Saturday, June 16, 2012
You know those signs "In this family we do . . ." that are all the rage? We need one custom made that says just one thing, "In this family we do ART." On good and bad days and all the ones in between there is always something being created here. It's important like air. Dan and Delaney are especially gifted. (I know everyone thinks their child is the next Picasso but when push comes to shove they usually counsel them to choose a "REAL" major in college.) Delaney is a self proclaimed "guerilla" artist. She has been since she was two years old. There is absolutely not one day she does not create something. She is blessed to have an amazing art teacher at her school and is taking lessons this summer. Today she was working on the watercolor techniques she learned last week. I love she is trying new mediums, but for as long as I can remember her particular talent has been color and pattern. These are the pieces I keep and frame and gift. I know they will someday be part of her "early work" collection. (I love this one just below!) On most days each of us choose our favorite form of expression, turn up a playlist and elbow for room around the table.
When we moved here from Maryland I sold almost everything I owned and loved including my Arhaus table that sat four beautifully in our little kitchen but could flip out for a party of ten. We inherited a little set from my parents when we moved here. It was brand new for all intents and purposes last June and is now "wasted" by art. It is "wasted" by life. I kept it perfect and fussed and fretted until I was gone recovering from my brain surgery and fusion. Someone watching the girls let them use nail polish remover at the table . . . and again at my little black coffee table. It took the top finish off both of them. There was also a super glue incident hidden for days by one of my quilted placemats by none other than Dan. Tonight as I tried to scrub acrylic paint off the finish I realized I wasn't even the least bit peeved. This table was everything I wanted that super expensive piece of ash table to be . . . LIVED on. Every time our family talks about our "dream home" there is a table where art never has to be put away, where paint dries and stays put layer after layer, and someone is always creating something.
We don't own any Chagall or Monet, but we have collected beautiful pieces that mean something to us and speak to our journey. We have shed our lives of almost everything except this art. If you visit our home, wherever we land, you will know who we are because of the story our walls tell. Art as life. Life as art. All of it.
Posted by Monica Kaye at 9:13 PM
Thursday, June 14, 2012
This nomination is near and dear to me because my cousin, Amy, wrote it about my Aunt Cara. The longer God gives me here on this earth the more I believe our bravery and our love are what remain when everything else falls away. My Aunt Cara leaves this kind of legacy in the hearts and lives of the literally hundreds of people she touches. One of the most courageous things a mom can do is get down on her knees and pray hard when your child has walked away. My cousin Amy has shared here what her mom has given her that resembles the heart of God for all of us. We can always go home. He is always waiting to run to us, forgive us and celebrate us. Amazing love.
I nominate my mother Cara. She has been through so much in her life and yet has remained so faithful to God. Everyday until I moved out we saw her on her knees talking to God but even then I could feel her prayers. She has been a nurse for almost 40 years, and many of those she spent as a hospice nurse. She used this opportunity to witness to many patients and their families. She went above and beyond her job duties to show compassion and Christ's love. She has families to this day who remember her and still thank her. She and my father kept foster children for 12 years. We still keep in touch with some of them. She sacrificed her time, money, privacy, and sanity to help children in need. She made sure we were fed, clothed, and raised in a Godly home. My mother has been through breast cancer, losing her father, rebellious children, taking care of her mother who has Alzheimer's, and a muscle disease. Through it all she still praises God and prays daily for us. She is planning yet another mission trip to a 3rdworld country to take medicine and the Gospel to those in need. The most amazing thing about my mother is that even after all the trouble I have been in, all the sleepless nights I caused her, all the tears, she STILL every day prays for me. She STILL loves me. She is ALWAYS my momma. She has taught me by her example to be brave and kind to my children and to others. I wish all kids could have a mom like mine.
Posted by Monica Kaye at 9:21 PM
Wednesday, June 13, 2012
I am so thrilled to finally be posting the other Kind and Brave Giveaway nominations. I am mailing out some little gifts to each one of these ladies with a printed copy, and, with permission from those who wrote about them, I am publishing some of the stories here to inspire you in your own pursuit of courage and kindness. This nomination moves me to tears each time I read it. Perhaps because the Ehlers Danlos Diagnosis is one I suffer from and my pain was so misdiagnosed for so many years. This woman's story encourages me to seek to live beyond my suffering every single day and continue to make a difference in the lives of those around me. Life is short and achingly beautiful. What will you do with yours?
Posted by Monica Kaye at 2:56 PM
Wednesday, June 6, 2012
June 7. Tomorrow. I will have a panel of bloodwork drawn for my allergy specialist. I will have a lumbar/sacral MRI to take with me to my Dr. Henderson appointment Monday morning. I will have special Spectracell micronutrient bloodtesting done to explore my nutritional deficiencies and poor absorbtion in addition to other issues. I will attend a special event at Glenmoor Country Club hosted by The Canton Chapter of The Foundation for Community Betterment to say a few words about this amazing organization and all they have done to help our family and many other individuals and organizations and announce details for their annual fall fundraiser, Rocktoberfest.
June 10. Sunday. I will fly from Cleveland to Baltimore for my Monday appointment with my neurosurgeon to review my scan from tomorrow and also go over continuing pain and neurological issues. (Thank you to my dear brother-in-law and sister-in-law who are willing to pick me up and drive me around while there and host me in their home. Believe it or not even asking for this help from people who love me very much is so hard for me. Thank you to Dan for taking vacation days to be with our girls while I am gone.)
June 11. Monday. I will see Dr. Henderson in Lanham, MD at 9 am.
June 12. Tuesday. I will fly from Baltimore to Cleveland to come home.
June 14. Thursday. I will have an endoscopy under anesthesia.
June 21. Thursday. Danica will have some very uncomfortable and traumatic urological testing done in Cincinnati.
June 22. Friday. I will see Dr. Tinkle, my geneticist, for a follow-up in Cincinnati. We will discuss my joint pain and subluxing, need for some kind of splinting, beginning PT with the therapist he suggested in Cincy who would make a plan for a local PT who could really hurt me without knowledge of my disorder, conitnued waiting for cardiologist appointment with Dr. Grubbs in Toledo for my POTS and medications.
June 24. Monday. I will have a colonoscopy under anesthesia. My gastro symptoms are severe. I had a horrible attack tonight after eating. I become so sick and weak. I am still bleeding.
I don't have the energy to give all the information behind these many appointments. I can only tell you the month looms before me like a mountain I could never even dream to climb.
How can you help? I can't answer that. We have needs. Our family is hurting. Our marriage is barely alive. I am breaking. There is a toxicity here, like a hidden mold, growing and making it hard to breath. It doesn't have to be true to anyone else. It is my truth. My chest constricts and my face is bright red, and I run to the bathroom.
I try to make a list. I try to email or message you back and say, "Yes, I need you to come get my girls. I need you to get me groceries or make a meal or just pray with me." I can't. I am letting paperwork slip. I am not returning phone calls. I just can't manage all this anymore. I don't want my husband to sleep on the couch because it's more comfortable than our mattress, and it's not HERE, looking at me, his wife who is consumed by this ugliness. I don't want Delaney to have to beg to have a big sleepover and then take it back because she's still embarrassed she lives in her grandparent's basement and knows I will be too tired to make it fun or be the cool mom. I don't want to change another diaper on a girl who is going to be five and wants more than anything to just be able to make a poop in the potty and simply cannot. I want to be planning something . . . anything besides more trips to doctors and hospitals and no trips ever for relaxing or reconnecting.
Please pray for us. God has an amazing way of always meeting our needs in perfect timing and to bring Himself the glory. I'm expecting this. God has provided a second vehicle for us through far away friends. We have not been able to make it to Virginia to get this car since we found out about this gift before my last surgery. Please pray we would be able to accomplish this. Although many days I do not feel I should even be driving, having a vehicle to make it to appointments and pick up prescriptions, etc. would be so helpful. We literally did not have the money for me to visit my neurosurgeon this coming week, and God brought this money in the perfect time to get one of the last remaining seats on flights that worked and it also brought me assurance I need to have continued care for the pain I am experiencing. I didn't come this far to quit.
Making needs known is like a tight wire for me. I've seen God bless this, but it makes Dan and I very uncomfortable. We do believe we need a break from living here. Even a month in a suitable short-term rental with very few of our things but just our family and a different environment is something we are praying for. Because of our love, Twixie, this becomes even more of a challenge and seeming impossibility. Also, we have rarely left our girls with anyone besides my parents. For many reasons we feel what is probably an unecessary anxiety about leaving them. Dan and I have got to find some way to heal the hurt between us caused by the inevitable damage of so much stress for so long. I cannot imagine if this marriage became a casualty after fighting for our family and for one another for so long. We need to exhale and be with one another without my parents over us and my grandma and Anna Mae popping up and Danica's door leading right into ours. I know Dan feels like he has lost almost everything he loved about me. I am grieving this very same loss. We need prayer, and we need a vacation.
I'm crying now. This is a good thing. It means I'm alive. It means my heart is not as hard as it was a week ago.
What are you doing this June?
We will be Rejoicing in Hope. Patient in Tribulation. Constant in Prayer.
Posted by Monica Kaye at 11:17 PM
Tuesday, June 5, 2012
Many of you have been asking "How can I help?" of late. I began working on a post as a general response to this very broad question, and I thought it was hanging in my drafts. Apparently yesterday I published JUST the above image I intended to go with my words when finished. My humble apologies. It seems rather strange just sitting out there alone, but I suppose it makes you think a little deeper without an explanation and contemplation is usually a good thing. There are ways we really do need help. I'm finding giving you an honest answer a very hard thing.
I am feeling some improved from my sickness. (No, not the sickness I feel ALL the time but the icky thing I caught on top of it.) I had my mom's car available today and after many weeks on the "to do" list and some begging and pleading from the girls I agreed to take them to OLD NAVY today to try to find some summer clothes. This was our deal. We could only go to one store. We had to be quick and methodical. We would look at clearance racks only, and if anyone began to complain or argue we would drop everything and leave. We prayed before we left. Yes, we prayed for God's good favor on a trip to The STRIP. By the time we got there I was already dizzy and parched and in pain from driving. As soon as we hit the door the smell of all those new clothes knocked me in the face like a sucker punch. An entire handful of my spoons was stolen instantly. We did well. The girls cooperated and were happy with the little shirts and shorts and skirts we found on sale. Delaney could see it in my face after about fifteen minutes. We had to get out of there fast.
I share this story because asking someone to take my girls shopping is perhaps something I could reach out for help with. Still, Delaney wants HER mom to see how things fit and Danica wants to prance and twirl for HER mom in the jelly shoes she thinks are so super cool. I want to be part of this. Shopping online is exhausting and the sales are never as good, and it takes hours to find the sizes and odds are Delaney won't like how things feel, and they will need returned anyways. This is why going out today was important even though it wasn't good for me and will put me in bed for a day of recovery. This is one of the many hard choices I have to make every day.
About a week ago someone close to me approached me about my lack of attendance at Sunday worship. This hurt me deeply. In the context of a trip to OLD NAVY, I can see how someone might not quite understand if I could do this today why could I not make the sacrifice physically to attend church on Sunday morning or as she put it, "If I was as sick as you say you are and could only pick one place to go each week I would make it God's house to worship with His people." It not only hurt me in the heart of one of my deepest desires but also suddenly brought up a million reasons why church has been one of the last places I have looked for or found healing in a long time. Before anyone gets crazy with comments or private emails on this subject I promise I will share in time a REAL post about how painful it can be to come from a church that completely wounds you and then wander far away from anything even close to God only to be called back to authentic GRACE and fall madly in love with Jesus and then sit for years outside on the stoop of what is supposed to be His house because just peeking in the windows terrifies you. (Way run on sentence . . . but sometimes you can't take a breath or you might not be brave enough to finish saying what you started.)
The true body of Christ has been ever present in this journey. The love and prayers and tangible provision for our family through You is unmistakable. I have experienced where two or three are gathered together over and over again and grown in community and fellowship in ways I never thought I could or would. I know in my heart God did not create me to be a spiritual lone ranger. I know He wants me in corporate worship and not forever listening to sermons downloaded on my ipod. I also believe He understands my frame. He knows how sick I am because He has allowed it. He meets me here, and I have nothing I can hide in His presence. And so I humbly ask you to step back from judging this weak sister. Please don't break this bruised reed. Please pray for me when you get dressed on Sunday morning and spray on your perfume for God. When you lift you head to view the screen and sing praises or sit with little or no discomfort in the pew, please remember not to take this for granted. As you watch your children skip down the hall to Sunday School or walk hand in hand with your spouse after the service to your car feeling the peace and joy that comes from gathering in that place, remember, it is a gift.
How can you help? Where is the update on our health and appointments? Next post, I promise. For now, just my heart. Our hope remains.
Posted by Monica Kaye at 7:07 PM
Monday, June 4, 2012
Friday afternoon I was driving to the doctor and saw a flight taking off in the distance. I was feeling so sick and was in so much pain, and I thought for just a minute about heading to the airport and buying a ticket with the cheapest fare to any place near the ocean. I wondered how long it would take for someone to realize I was gone. I thought about that awesome limbo feeling I have in the sky when no one can reach me. I imagined landing, taking a taxi to somewhere just over the dunes, stepping out and catching that first intoxicating whiff of salty air. I visualized taking my shoes off and walking into the outskirts of the surf, sitting down in the wet sand and finally letting myself cry. I need to weep. Not just little tears that I wipe away quickly so no one sees but big heaving sobs that purge me of the deepest kind of hurt.
Of course I came to my senses and realized the cost of my ticket would literally take food out of my girl's mouths, and I didn't have any of my medications with me and would probably be hauled into the looney bin as soon as I was found. Truly, the last thing my family needs is a wife and mother who goes AWOL. Or maybe it is what they need. I don't know anymore.
I've been reading a book written by Tullian Tchividjian titled Surprised by Grace, God's Relentless Pursuit of Rebels. It's about Jonah. Jonah is not exactly the guy most of us would pick as a Bible hero. He was blatantly disobedient. He was so full of despair and anger after he disobeyed God's call to go to Ninevah he said three times he wanted his life to end. He is perhaps one of the most famous runaways in history. Remember when he is hiding in the bottom of the boat sleeping and the others aboard are trying to save their ship during a horrible storm? They finally realize Jonah is the one bringing them peril, and they throw him overboard. The big fish finally enters the story. It's good stuff but in no way am I endeared to Jonah's cowardice through his journey. It hits too close to home and makes me squirm in my seat.
God called me to something painful and heart and life changing through Danica's illness and my own. At times I have kicked and screamed and run away. I have asked for my own life to end. I have curled up in a ball and tried to forget it all by sleeping while the storm rages. Sometimes in my broken body and wounded spirit I feel like there must be some grave disobedience that has sent me to the depths of this basement to suffer.
John Piper wrote this beautiful poem about my new friend Jonah. It encourages me. God can use my failures to accomplish His purpose, and His grace will always bring me back to the love of God.
Learn how the work of God is done.
That there is fierce and stormy grace
With wind and waves and mangled face,
And sailors with condemning dice,
And demons waiting sacrifice,
And giant fish with slashing teeth,
And gasping, acid graves beneath.
Yet none of this is to destroy,
But to restore the prophet’s joy,
And not his merely, but the throngs
Of Nineveh will sing their songs.
And Jonah, in the coming years,
Will say with tender heart and tears,
Along with each whom God will call,
The price was high and worth it all.
The pain of being loved by God
Is great, so let us kiss the rod.
"Restore to me the joy of your salvation and grant me a willing spirit, to sustain me." Psalm 51:12
(Last weekend I took my family to a hotel just down the road, and we all ran away together. I had just enough Marriott Rewards points saved for one night in a tier two hotel. Dan swam with the girls, I got a nap, we watched a movie on pay-per-view with vending machine snacks. Dan had to work on Memorial Day and eventually left for the night to take care of Twixie. After he was gone the girls and I played "Mother May I" back and forth in the room, and we watched Food Network shows until we fell asleep. It was the happiest twenty-four hours we've had in a very long time. It reminded us how good we are when we are together and how we can't give up our dream of being "just us" again.)
Posted by Monica Kaye at 3:17 PM