The Waiting Place

Have you ever read the book, Oh, The Places You'll Go!, by Dr. Seuss? If so, you know the part where he talks about a place where "everyone is just waiting"? I feel  a lot like that right now. Waiting for the kids current school year to end. Waiting to begin home schooling. Waiting to see if we are going to stay on the mobility list with Allstate or just plan on staying here for the long term to be near family in case of another MS flare up. Waiting for Sarah's vision to be completely restored. Waiting to see if this baby project will become a reality or just remain a dream. Waiting to finish Sarah's steroids. Waiting to see what our portion of our medical bills are going to look like. Waiting to decide if we are going to move to a bigger house in Cuyahoga Falls, or if we are going to try and stick it out that much longer in our house. Waiting to see when Sarah's MS is going to act up again. Waiting to see, if it does act up, where will the flare up occur? Waiting, Waiting, WAITING!!!!!

I feel that I have no control over anything in my life. For a control freak like me, that is a terrible, terrible place to be.  My house looks like a bomb went off it in, my refrigerator is bare, and all I feel like doing is burying my head in the sand and ignoring it all. I was so happy, and grateful, what? two weeks ago? Do you remember all of those blogs of me dripping with gratitude, and love, and just pure gratefulness? Ah, that ship has sailed, hasn't it? Instead of certainty about my life I feel more uncertain than ever. I do not feel like I even know which way is up anymore.

I am waiting for certainty to come back into my life. Waiting for that feeling of control to be restored. Waiting for some semblance of my old life to peak its head around the corner. Just waiting...

(Photo & Book excerpt courtesy of: http://papahere.com/the-waiting-place)

The Waiting Place…
…for people just waiting.
Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a
Yes or a No or waiting for their hair to grow.
Everyone is just waiting.
Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for
Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a sting of pearls, or a pair of pants or a wig with curls, or Another Chance.
Everyone is just waiting.
NO!That’s not for you!
Somehow you’ll escape all that waiting and staying.
You’ll find the bright places
where Boom Bands are playing.

Waiting for Summer Break

I am anxious for the kids to be done with school. Sarah is home now, and has been since her MS diagnosis. Her neurologist thought it would be best to keep her out of school since her vision is not 100% and immune system is suppressed. Life seems a bit disjointed now. Everything seems out of whack. I just want my family home.

I am ready for them all to be with me. I am ready to begin a new routine with a new daily flow. I am ready to embrace our new life. Oh, I still have that rage sitting in my belly, but the fighter in me is also back, and she will be damned to let the rage take over her life just as I will be damned to let MS take over my daughter's life. I am ready to begin my new normal, and I will not let this disease rob us of anymore joy.

I will fight MS with everything I have, and I will not stop fighting until a cure is found, and Sarah is rid of this terrible disease. I will look into every possible remedy to keep it at bay, and talk to everyone I possibly can to get as much information as possible. Because MS is such an individual disease with no 2 people having the same journey I will get to know Sarah's MS personally. I will try and learn as much about how it reacts in her body, so that I can eventually be one step ahead of the disease. I will learn so much about her individual form of MS that the disease will recoil when it sees me coming. I will fight this disease until the day I die, if I have to.

Maybe it is wrong of me to want to hang on to my family very tightly right now, but I cannot help myself. We are not guaranteed anything in this life, and I want to make sure that each second that I am able to I am spending it with those I love the absolute most - my husband and my kids.

Including today, the kids have 7 more days of school. I am just as anxious as they are to have them come home. Lazy days at the lake, home schooling, and working as a family unit to keep a clean & organized home are how this family is going to spend its summer. I cannot wait.

Welcome to Holland

My soul sista, as I like to call her, sent this poem to me. She has been my rock throughout this whole ordeal, and I am ever so grateful for her support. It perfectly describes our new life. I will carry this poem in my heart for ever and always.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The Rage Inside

It is filling me with a darkness so deep I feel I cannot find my way out. The thickness of it so massive I feel it twists and turns me about until I no longer know which way is True North any longer. It corrupts my thoughts of a good life yet to come, and crushes the hopes I have of the tomorrows I have not yet seen. It is a rage that is filling my belly and traveling to my heart and up through my lungs. A rage so dangerous I am terrified of what will become of it if I let it out.

It follows me in my sleep lurking behind every beautiful dream. It is creeping into my heart waiting to capture the hope that clings to it, ever so desperate for the best future possible. Rage is inescapable right now, and I do not know what to do with it other than to own it.

I find myself catching my breath throughout the day as this feeling deeper and darker than anger taps me on my back to remind me that it is still with me. It takes all of those well wishes from acquaintances, friends, and family, and twists those words into ugliness. It makes me want to yell out that it all might not be okay, and that everything will not get back to the normal we all knew. This rage makes me want to scream back to everyone that how can they guarantee that everything will be okay? How do they know that everything will be all right? If there is one thing to be learned, this rage whispers in my ear, is that there are absolutely NO guarantees in this life. That with the snap of your fingers, in the blink of an eye, what once was is now no more.

And yet, I smile to friends and family alike, and tell them that Sarah is getting better. I tell them that we are hopeful for her future. I tell them that she is becoming more and more like her old self. Even still, while I am spilling all of these words out of my mouth, my new companion, rage, makes himself comfortable in the deepest parts of myself. I know he is with me. Just like with Sarah's disease, I would love to rip this unwelcome guest out of my body, throw him on the ground, and stop on him. Ridding my body, soul, and heart of him completely would be a dream come true.

I know that this rage is part of my grieving process. I know that I am in mourning not only for what should have been, but for so many other reasons as well. I know that in order to get rid of this darkness I must embrace it, accept it, and learn to love it. When I am able to do those things the hold that rage has over me will subside, but I am not ready for that yet. I do know that time is the true healer of all things, so I will sit with this monster inside of me, and I will wait until the time comes when I am ready to face it. In the mean time, I just hope that it doesn't completely overcome me.

Birthday Boy - Josh

Today is my son, Joshua's, birthday. He was born at 9:55 am. When he was born his nose and lips seems to take up his entire face, but eventually that little baby grew into a little boy, and that nose and lips fit his face perfectly now. He was such an easy baby who grew into an easy toddler, and an easy child.

I am so proud of him. He is kind and compassionate. An extreme lover of sports. He is such a talented athlete, and I cannot wait to see where his passion for all things soccer takes him. He is a loyal friend, and is becoming an even more loyal brother. He is a mama's boy who will snuggle up to me by moving over on the couch inch by inch instead of just coming over for some lovin'. He does not wear his heart on his sleeve, but rather protects in the event that it could get hurt.

He has grown immensely over this past year - not so much in height, but in maturity, and I no longer feel that I will lose him to his friends when he gets older. My family first motto seems to be sinking in to his psyche, and although he values his friendships very much, they are no longer the end all be all.

He is very quiet, that youngest son of mine, but very observant. He is the fly on the wall always listening, not so much to be nosy, but just because he worries a lot. He is the best friend to his little cousin, Michael, and is a great role model.

He makes my heart smile.

So, to you, Josh - I love you more than you will ever know. I hope that this year is full of everything you could have dreamed of - and then some. I hope that you know how much your dad and I love you, and how valuable you are to our family. You make me so proud, not because of what you do (although you do some amazing things), but because of who you are. Your character is more important to me than anything else you will accomplish in your life. I hope this day is filled with laughter and love and hope.

Love, Mom

Hell on Earth and Moving Up to Purgatory

Saturday, May 18th, 2013 will forever be burned into my head as one of the hardest days of my life because that is the day that my girl, Sarah, was diagnosed with Multiple Sclerosis at the age of 8 years old. It was a day in which I felt that hell had come to settle around me right here on earth

Sarah has had a series of headaches since the beginning of the school year. They would come and go over the course of a day, and she would get one every couple of months. We took her to the eye doctor and was told that her vision was fine. No glasses were necessary. Life continued on with Sarah still getting her periodic headaches.  About 2 months ago the headaches increased in frequency and she was getting 1-2 every week. Because Sarah is a perfectionist I attributed her headaches to stress. I made sure she was getting enough sleep each night, and tried to monitor what would be happening prior to her getting her headaches, but no patter emerged.

On Monday May 13th Sarah woke up with a terrible headache and severe eye pain in both eyes. This headache and eye pain continued through Wednesday when she was seen by her pediatrician. She was given an xray to see if allergies could possibly be the culprit for the headache since her dad suffers from allergies. Her xray came back clear, and the doctor asked that we schedule an MRI for Saturday - just to see. She, like me, had a hunch that something just wasn't right, but neither of us could put a finger on it. MS, I don't think, ever crossed her mind because it is a rare disease in children under 18, and even more rare in pre-pubescent children. In fact, I later learned, that her in 25 years of practice Sarah's doctor has never seen a case of MS in a child. After the xray we were sent home, and told that if Sarah's symptoms got worse to go to the ER. Thursday morning Sarah woke up and vomited. She still had a terrible headache, and her eye pain was excruciating - particularly in her left eye. We went to the ER where she received a CAT scan that came back clean. Sarah was then diagnosed as having migraines, and sent home with a prescription. She woke up on Friday morning without eye pain or a headache, and excitedly went to school. Sarah came out of school Friday after noon and was seeing black dots in her vision. She took 2 naps and felt better. By Saturday, she was watching her sister play soccer when she suddenly went blind in both eyes. Her pupils dilated to the size of her irises, and she became terrified. Because I was still in the hospital Bob came to pick me up, and from there we immediately went over to Children's Hospital. An MRI, Spinal Tap, and several eye exams later her neurologist told us that she has Multiple Sclerosis. Her MRI came back with lesions on her brain, and her optical nerves were extremely swollen which was causing the blindness in both of her eyes. The pediatric neurologist assigned to her case, Dr. T.K. (who is an AMAZING doctor and specializes in MS), started her on a very high dose of steroids Saturday night in order to try and stop the swelling from getting any worse, and then to also reduce the swelling. Sarah stayed on these intravenous steroids until Tuesday afternoon, and began taking an oral steroid on Wednesday morning which she will be on for the next 12 days.

Sarah ended up being in the hospital from Saturday until Wednesday, and was released last night. Her vision in her right eye has mostly come back, but her left eye is not so good. The doctors are hoping that she will be able to recover vision in her left eye, but are not certain that she will be able to do so. It will be awhile before she can see clearly out of both eyes - if ever. I am grateful for the return of her partial vision. I was so very angry with God for a couple of days because I could not understand why he would take her vision of all things. Sarah's big, blue, doe eyes are the most beautiful eyes I have ever seen, and I cannot imagine a world where she would be blind. THAT to me would be inexcusable, and in the event that MS would take her eyes from her in the future then God better be aware that I will find a way to march my ass up to heaven because we will be having words.
Blindness is not an option for Sarah. I will not let it happen. I cannot fathom a world in which my daughter cannot see her siblings as they grow and change. A world in which she cannot do crafts and ride horses. A world in which she cannot see the changes all around her. I will be damned if this disease would try and take that from her. I will be damned if this disease takes anything else from her either.

Our new life will be filled with doctors appointments and adjusting to this disease, and of course this blog will now be filled with entries about Sarah's progress and MS information. For now, we are taking things one minute at a time because really, that is all that I have, is the present moment.


****The above portion of the entry was written on Thursday evening. I am happy to say that after visiting the ophthalmologist today, Sarah's vision in her right eye is almost completely restored. Her left eye is a different story. Doctors believe she will eventually regain vision in her left eye, but she currently has limited vision and is moderately color blind in that eye as well. The swelling in both of her optical nerves is decreasing which is a very good thing. She will be on steroids for the next 10 days, and doctors are hoping that the steroids will help reverse all of the damage done by the onset of the horrible disease. ****

Post Surgery Life

Funny how life can alter the course of things, and how sometimes disappointments don't seem so bad when looked at from a different perspective. My surgery was partially successful. The doctor was able to "retie" one of my tubes, but the other one did not have enough length to put back together, so he was unable to reconnect that one. I was looking at the situation from the wrong perspective because, although I was grateful that I had a better chance of conceiving than I did before the surgery, I was a little sad that it was not entirely successful. I took it upon myself to determine that if I had a 70% chance of conception with both tubes retied then I must have a 35% chance of conception with just one of them. I was feeling sorry for myself for a fleeting moment, and then realized that if it is meant to be it will be. A 35% chance is better than a .003% chance (which was what my odds were when both tubes were tied), so things are looking up.

My recovery has been both very speedy and a little bit bumpy. I was released from the hospital at 11:30ish on Saturday, and was supposed to go home and take it easy for a couple of days, but I ended up going from one hospital to another as my daughter, Sarah, was rushed to the ER for a medical condition that needed to be addressed immediately. So, instead of getting rest, I paced the ER floor and took care of my family.

I have been really watching what I have been eating in hopes to help my body heal, and it appears to be working. My incision barely hurts anymore, and I am able to sleep on my stomach (which is the only way I can get a good night's sleep). I will just be taking my recovery one day at a time, and know that if I am meant to be the mother of another child it will happen. If not, then I did everything that I could with the resources that I had, and it wasn't meant to be. I am truly okay with that.