Thoughts from a New American- A Reflection on my Citizenship Journey

I laid out all my red, white and blue clothing on my bed that morning in October 2013 and considered "What would I wear on this long anticipated day?". I wanted to show the world how proud I was to be become an American. I smiled all morning considering the implications of what was about to happen. I have always been in love with the idea of America. I grew up hearing my parents tell me of their adventures on the west coast and my curiosity was peaked. Even at that young age I imagined one day I would go there. I was totally taken in with the American dream, the idea that you could do and be anything you wanted. I would become transfixed with the images of big cities in the movies, thinking they must be magical places. But it wasn't those things that eventually captured my heart. When I first landed in the states, a little dazed from jet lag, I was greeted by a lady who would become my dear friend, Debi. She had taken out her best tea set and greeted me with a cup of tea and a smile. As we sipped she showed me photos of her family. I was a little taken a back that she was so open with me having just met me but as she told me stories my nerves eased and I began to relax. I don't think anyone had ever welcomed me like that in my whole life. As the years went on my friendships grew and I was able to travel around different states. With each new meeting that same hospitality and openness met me. Americans know hospitality. They are the kindest people I have ever met. But even this was not the most impacting thing. It is their love for their country that captured me. Their pride in their land. I used to think it was fake and wishy washy and I was almost irritated by their patriotism, I mistook it for arrogance. "What makes them think their the greatest country in the world?" But can I be honest? In my opinion it is. America is different. America is revolutionary. It truly is, in my humble opinion, the greatest nation in the world. Any why? The answer is their foundation. They are formed out of resilience, from a dogged determination to have freedom. The people who left England to form this nation did so to be free, they were truly the rebels of the day. And their spirit lives on in the heart of this country today. The heart to fight for freedom and equality and for rights endowed to us by God. One read through the constitution and you see the beautiful formation of this land; it's such a progressive work- establishing God as sovereign and fighting for human freedom as our God given right. Nowadays some may say the country is slipping away from this but I believe the American spirit will always fight for what is right; even if some stray. So that brisk October day I put on my red, white and blue and read my oath of allegiance, holding back the tears. I was and am proud to be an American. It takes nothing away from my British-ness, I mean why would it? The majority of this nation is made up of a mix. It's the melting pot, I have met very few people who are not a mixture of at least two countries. That's the beauty of America, we're all mutts :)

The journey to citizenship was not an easy one but I am so happy I did it. It's like my heart was always meant to find it's way here. I admit I am hopelessly in love with this nation and the people. America is my home now and although I miss my beautiful England this is where I belong now.

Home for Christmas

Christmas 2007 was my last Christmas in England; the excitement was high, my brother was getting married and I was going to Boston. My parents were seeing a lot of change in the space of a month. I remember saying goodbye to my Mum and Dad at the airport and they were weeping; I thought "why are you crying? I will be home in 6 months!" My parents were smart. They knew, deep in their hearts, that it would be longer. I didn't know that Christmas would be my last with my beloved Father. The last time we would go together Christmas shopping for Mum, the last time I would search high and low for country music albums for my him (they're hard to find in England), the last time we would sing Christmas carols at church together, the last time we would open gifts together. That Christmas haunts me in a wonderful and painful way. Each year since then I have celebrated with my family in Western Pennsylvania, creating new traditions, making precious memories but my heart brims knowing I can go back to my heart land this year. I have wanted for so long to be with my Mum in this special time. But as I ponder on the trip there is an edge to the excitement I feel, a sharp edge. A pain. A grief that I cannot suppress. My family will do what we always used to do; go see the Pantomime (Christmas play), exchange gifts, sing carols and eat yummy food but we will do so with a void; a missing piece. And although I want to pretend it doesn't hurt and I want to breathe back my tears I will not. I will be real. Real pain and real joy. And many of you reading this know this void and I share this for you. Christmas is hard. Really hard. The month of December is always is filled with tears; the first Christmas song I hear brings such strong memories that I have to turn it down. It takes me time to ease into the season. If you are reading this and have lost someone you love you feel this too and it's ok. But this pain is not all there is. When I reflect on Jesus, his birth and the hope he bought and ultimately perfected on the cross then my grief is eclipsed by peace. I suddenly think of heaven and I can almost see it. My dad in the presence of God, more human than ever, cancer free and enjoying eternity with him. And I, as a friend and follower of Jesus, will join him someday. And on that day there will be no more goodbyes. When I remind myself of that truth joy begins to creep into my heart and I begin to reflect not on my dads absence but on all he bought for so long and the future fellowship we have to look forward too. And this hope is not exclusive. It is for you too. Maybe you are reading this and Jesus has never been more than a distant concept but something stirs in your heart as you read this. Then I say today is the day to meet him. Today is the day to let him comfort you. Today is the day of hope. Jesus is real. His presence is real and only he can bring meaning to the loss you feel. He has done it for me and he can do it for you too.

A Dream Becomes Reality

When emotions overwhelm me I have to write. It's the way God wired me. It's the way I process; ponder and pray. Tomorrow is a anticipated day. During the last 4 years of medical craziness a thought began to creep into my mind; normally on the days that seemed without hope; that wouldn't it be nice to get away. I would close my eyes and imagine John and I, health restored just taking a vacation. A marking of a new season, a moment to symbolize the old passing and the new coming in. Just like the changing of the seasons. I began to pray, selfishly I confess, that God would make a way, after all the medical stuff was done, to give us a break. I remember so many days of trial and pain being lightened by talking about that possible future getaway. I remember whispering to John when he was in pain "One day you'll be healthy and we can getaway somewhere warm and celebrate". It bought solace to our darkest hour. How odd that such a small hope could bring light to a dark place. A few months ago, as we were praying John could have his hips replaced a good friend called and said he was sending us a letter and it would arrive tomorrow. The next day I met the mailman at the door and got our letter. As we opened it we saw a check for a quite large sum of money. In the letter they told us they felt God wanted us to have it and mentioned "you guys should take a second honeymoon, you need a vacation". I just began to weep and weep and weep. God, who had already given us so much, gave us even more. We decided on Mexico, Playa Del Carmen to be exact and we leave tomorrow. Tonight the tears have just flowed. I just keep looking at John and saying "It's here, you're healthy, we made it". How good and extravagantly loving is our God. Even today, a day that for my family was devastating for reasons that are not for me share, I am reminded once again that although I do not understand His ways, I know they are good and I know they are loving. And yes He cares about the small things too. Our physical bodies are healed and I know in this next week God will finish the healing of our hearts. Once again, to everyone reading this, we thank you, we love you.

Reflections on the big 30

I don't think I have had a birthday I have anticipated so much as this one. 30. Even to see that number a wave of disbelief comes over me and I think "me? 30, but I am just a kid". 

Age has never really bothered me, each year would pass and I would reflect but never for more than a moment. This year is different. When I think back on my twenties and who I was when I entered that decade I barely recognize myself. That decade held my highest joys , my deepest griefs and my biggest victories. I gave my life to Jesus at 22; an action that would determine the direction of every step since. At 24 I moved to Boston; permanently (although unbeknownst to me at the time). At 26 I married John; what a wonderful gift to move away and find a best friend for life. At 26 I buried my father; the most heart wrenching season of my life. At 27 I walked through Johns bone marrow transplant and the years after of health trails and the sweetest victories. At 28 my John was healed and rocking an amazing new immune system. At 29 I watched my husband struggle to walk; and after 14 months I watched him gain strength over strength and walk hand in hand again. And at 30 I reflect. On years that both ache and bring unspeakable joy. I look forward the dreams we have put on hold coming true, to days and weeks without hospital appointments, to travels and times of wonderful fellowship with friends and families.

No reserves, no retreats, no regrets.

Here's to the next 30 years...

Home

It's been 15 days since johns surgery and he is finally home. The days have been long and exhausting, more so for him than me, but I know I will sleep better now he is home. In fact as soon as I sat down on my couch the relief was so immense I could have slept right there! :) probably should eat first :) I am amazed by how well he is doing and how well he is getting around :) thank you for all your prayers and support :) 

Therapy dog!

Today we had a private visit from Kallie! She is a puggle (half beagle, half pug) :) apparently this is johns second visit of the day with her as he snuck a visit this morning where she fell asleep on him :) this time she had much more energy. After a tough day of therapy it was just what john needed :) 

Rehab day 5

It's another gloomy rainy day in Boston but inside the Spaulding rehab "iron man", as our friend Aimee calls him, is making strides! He has 3 hours of collective therapy every day; normally split into a morning and an afternoon session. I (Amanda) spent my afternoons here so I get to attend that session. Today he walked really far and even did a short obstacle course with his walker. He lifted his legs, stood up and sat down many ones and did some arm weights. John was a little preoccupied today though. He found out yesterday that this hospital has therapy dogs. He is now a man on a new mission, find the dogs :) hoping we can find them soon :)

Rehab Day 4

This is the real first day. It started off a little shaky, John was dizzy upon rising and passed out a few times. This was probably a little dehydration and he is feeling less dizzy now. This afternoon he went to the therapy gym and began learning to stand and move his legs. It was obviously very painful but he did everything he was asked without complaining or whining. He is so strong. He has already come so far :) I bought some photos do in today so now the faces of the people he loves spur him on when he feels low. I know he needs encouragement so much these days so if you want to sent a him a note you can send it to me or request our address at amandalouisecaton@gmail.com

Sunday reflections

"You cannot quantify human suffering" the nurse said to John as he told her our story. This is reflective place. It's eerie to know so many others recovering here were injured by the Boston marathon bombings. I see them around and my heart aches. They began their lives the morning of April 15th not knowing their lives would be permanently changed. As John and I sat by the water yesterday another couple sat not far from us, both weeping; this is place full of stories, full of suffering. As John told his nurse our story she spoke with such wisdom. She said "John, there will always be people you can look at who have suffered less than you and you can feel like a victim or even superior over them; there will always be those who suffer more than you and you can use that to somehow feel better or justify not complaining but really you cannot quantify human suffering, you can't compare yourself to other people so make the best of what you have"

Even as we sit here beginning the painful weeks and months of rehabilitation we are thankful. We know we are blessed not cursed. As we were walking around the hospital there was a Gandhi quote engraved on the wall which reminded me so much of John, below is a photo but just in case the quote is not clear it says: 

"Strength does not come from physical capacity but from an indominable will"

Rehab Day 2

The sun is finally shining in Boston! And we took full advantage walking the harbor today - I say walking, John was rolling. The physical therapist saw him this morning and estimated he would be here between 1-2 weeks with additional outpatient sports therapy. Johns pain is managed very well and he is in good spirits. The real work starts on Monday! The road is a long and painful one but he is in a great place! Resting this weekend :)

Rehab

"They tried to make him go to rehab and he said yes, yes yes"

I think john is fed of me singing this to him. John is going to Spaulding rehab hospital in Charlestown at 4.30pm today. This is very exciting as this one of the best in the country. Again we stand amazed at how God always provides the very best for us. John has been doing exceptionally well in his physical therapy here but has a long way to go. Not only recovering from the bilateral hip surgery but also learning to walk again as he has not walked normally for over a year. We had a very funny interaction with our nurse today. She said "John you have such a peace about you in fact when I first saw you reminded me off...well God...it might just be the beard, it does make you look like Jesus". We all laughed but its actually not far from the truth: no john is not God but he does carry his presence strongly and brings His peace and how encouraging to know gods presence is tangible, not just to us but to others. More news to come...

He is walking!

The next day

It was quite an eventful night. Due to his fevers and low blood pressure John was transferred from the orthopedic ward to bone marrow transplant ward which has many benefits. The first is he gets his own room and its cleaner so much less chance of him catching an infection while he is here. However the downside is the nurses here are not trained to deal with hip replacement patients. The physical therapist has come twice today and worked with John. The exercises he did were incredibly painful and although both times his blood pressure dropped and he had to lye down the physical therapists still said he "did well for his first day". His fevers went and blood pressure normalized early this morning but seem to return intermittently. He also has intense pain in the incision sites, and sporadic nerve spasms in his left leg. They are also culturally a blood and urine sample just in case the fevers are related to infection. There are few ideas flying around as to why he keeps having temperature and blood pressure problems; the first is he didn't get enough fluids during surgery, the sedation and epidural caused it (that's my theory after speaking with a number of people who have had epidurals) or its an infection. Suffice to say seeing John in intense pain is very hard but I take solace in the fact that after the pain will come the freedom. After all the joy comes in the morning and morning is coming...

14 Hours later

Hospital days are long, surgery days are almost intolerable. Those of you who have been or who have cared for a sick loved one can relate. Around 1.00pm this afternoon the surgeon told me the replacement had been a success. I waited a further 2 hours to see him; he was groggy but it was good to see him. They then asked me to wait an hour until he was transfered to his room. I waited for an hour. And then two. The third eeked by at snail pace and by the 4th I knew something was not right. They then called me back down to the post op ward. John was having trouble moving his legs; he had had an epidural but the nurse said it didn't normally take this long to gain range of motion. Suffice to say in the next 20 minutes John was lifting his knees (he's a crafty little bugger, it's like he heard the nurse say he couldn't do it and he thought "I'll show you") With that resolved we were left with 2 more issues. He has quite considerable pain at the incision site, again maybe nothing and he is runing a fever of 101. As with the first it could simply be his body adjusting. This was a big surgery and his body just got packed a whole lot of sedatives! So at 7.30pm I am back up in the family waiting room, my 10th (maybe more) cup of coffee in hand and hoping for the call any minute to go to his room and settle him in for the night. As I sit and write the verse comes to mind that talks about our battles not being flesh and blood but of spiritual darkness and light, the principalities above. I feel that in my mind. A part of me which says "despair and pity and worry" and yet another stronger part of me that says "trust, do not worry and have faith". I won't lie, I didn't have some long quiet time this morning, I haven't spend weeks fasting and seeking God for hours, I didn't "earn" this peace as I think sometimes we think we have too. The peace and warmth I feel from the Lord right now is a gift from Him to me; it is perfect Father giving his often faithless daughter the gift of trust. What a faithful father.

Hips don't lie

It seems about once every few months we have a "today's the day" moment. Here I (Amanda) am again frequenting the hallways of Brigham and Women's hospital waiting for John to come out of surgery. Fortunatly this was a planned surgery and one we have been anticipating for a long time. His pain started 14 months ago. His legs began to ache and then his hips began to feel tight. He assumed at the time it was the hills of Pittsburgh as we were visiting there, if you have ever been you will understand. It was a few months before he was diagnosed with severe avasular necrosis (John has a habit of getting oddly named diseases that very few have heard of). To put it simply when he had a bad GVHD reaction during transplant he was put on high doses of prednisone (insert blood curdling scream here *if you have been on it you will understand). These doses restricted blood flow to the hip bones and this caused them to die and become brittle. Due to medical red tape we had to wait till now to have this surgery. I am unsure if me crying at our appointment helped push the date sooner. 7.30am they wheeled him away from me, that moment is one I have never got used too. The emotion almost overwhelms me everytime. Bi-lateral hip replacments (both hips at the same time) take about 4 hours and with preperation time I was told not to expect any news till 1.00pm. As many of you know and have read I really believed it would not come to surgery. I believed I had a word from the Lord, several in fact, that God was going to heal John. I held to this. I proclaimed this. I have wrestled with this. But as I sit today I feel a deep sense of peace. And dare I say it I feel the Father's pleasure over me, like He is proud of me. I may have looked like a fool in the eyes of the world but I proved to be faithful in the eyes of my heavenly Father and that, for sure, is worth more than any earthly affirmation. In the end God was and is faithful, John is being healed, he will walk again and the "new season" that God has confirmed time and time again is coming will come to pass. Who am I to question his ways? Finally as I logged onto this blog to write I noticed our blog has had over 9500 views! I hope every person that has come and will come here will be infused with strength and hope that only Jesus can bring and please if you know anyone struggling with health issues direct them here. My next entry will be an update on John post surgery and coming soon an entry about how God used John and I to encourage a family facing a stem cell transplant. God is so good.

Update on Hips and Amanda's Surgery

I doubt anyone could say our lives are uneventful! Amanda's surgery on the 6th February went "perfectly" and her doctors are pleased with her progress; she will get all the clear in May. John saw his hip doctor last week and is scheduled for a double hip replacement on the 3rd May. We both look forward to being able to move on with our lives, John walking, Amanda healthy. It's been our hope for a long time. When we talk about the replacement we are filled with equal excitement and a tinge of disappointment. Our belief in God healing John supernaturally remains but we must also do what is right, what is medically necessary. It's not doctors or God; God uses Doctors all the time to heal people. We believe he has spoken so much over this past year about John's health and I admit (Amanda) that perhaps I misinterpreted and placed my own assumptions on what I heard. Truth is I know I heard the Lord and I know what He said, His faithfulness and goodness is not in question. However I have learned that often the problem is in the hearing, the human end of the equation. This last year has taught us so much. The art of simply trusting and the disappointment and sometimes embarrassment of walking in faith. The important thing is John is going to be ok, he is going to be able to be healed and back to normal. However God does it, it is surely his faithfulness to do it that matters. Should we complain about how He does it? Or should we just be thankful that He did what He said He would do? Pray for us as we approach yet another surgery. Pray for wisdom for the doctors, for strength for John, and for Amanda. Pray also protection over us both from the shadow of self pity. So often we are tempted to feel bad for ourselves, we look at our lot and we ask "why us?" but we know self pity is a poison and praise and worship of our Lord bring clarity and joy. Here we go again...

Amanda's Story

It feels rather strange to be writing a blog entry about my (Amanda's) health. I first noticed a problem back in June 2012 but told few people because I didn't want a fuss, plus i wanted to concentrate on taking care of John. After all he is the sick one right? Well unfortunately sickness hits us all at some point.
So here is my story and I humbly ask for prayer.

Back in June 2012 I missed a cycle and assumed, as you do as a married woman, that I was pregnant. A little scared but at peace I visited the doctor. The test was negative. So why did I not get my normal cycle? (Sorry if you are guy reading this!). In their tests they proactively also tested some other hormone levels including thyroid and one called Prolactin. Thyroid normal, Prolactin elevated. To put this into perspective, that should not be elevated unless I am in late stage pregnancy or breast feeding of which I am neither.

They waited and no cycle so 3 weeks later they tested me again, prolactin higher.
They booked me for an MRI because they thought I may have a tumor on my pituitary gland (gland shown to right)

It showed quite a sizable "cystic lesion". Back in June I suffered a very bad headache, worse than ever before and one that came on and left very quickly. I have suffered with migraines for years but this was different. It was so bad I was nauseous. Doctors think this could have been a small bleed that caused this cyst. They gave me medication and offered me surgery. At the time I lacked complete health insurance due to my immigration status (it used to be that if you had a green card less than 5 years you were not eligible for health insurance, and my status as a volunteer meant I was not eligible to buy it either; a rule that was recently overturned granting me full insurance).
Anyway I took the medication.

I went back to see my surgeon and endocrinologist before Christmas and the cyst remains, although slightly smaller. Today I called and ask them to book my surgery, the insurance has approved a 1 night hospital stay but the hospital is appealing for 3 days. So tomorrow the neurosurgery team will call and schedule me in.

I apologize for not sharing this sooner; for a long time I just wanted to not think about it but I value your prayers too much to withhold my need from you any longer.

This is a bump in the road for our family and believe once this is over I will be walking in full health again.

Thank you :)

Watch this Space!

It brings me great joy (and a little fear!) to announce that I (Amanda) am beginning the process of writing a book about the stem cell transplant experience. It has been on my heart for a few years now and more recently God has begun to speak to me that now is the time. Why do I want to write it? I want other young couples who walk through chronic illness to know they are not alone and I hope what we have been through can encourage and strengthen others who find themselves on the same journey. On a personal note I believe it will be incredibly cathartic to put into more words what happened. Please pray for me and advise me if you can! O and watch this space... :)