The things I miss. The things I don't.

I miss looking up when I walk. 
I miss holding the beautiful children in my life.
I miss running.
I miss dancing.
I miss being spontaneous.
I miss playing.
I miss competing in sports.
I miss walking up stairs.
I miss being able to exit a room with defiance.
I miss wearing whatever I want.
I miss my pretty shoes.
I miss dreaming about being a mother.


I don't miss taking life for granted.
I don't miss putting things off for tomorrow.
I don't miss believing I am worthless.
I don't miss believing I am weak and feeble.
I don't miss lying about the sum of who I am.
I don't miss seeing the glass half empty.
I don't miss worrying about the small things. 
I don't miss living in a small world with defined possibilities.

Disneyland Part 3 - The Opportunity

There are five stages of grief include denial, anger, bargaining, depression and acceptance. I am fortunate to be able to get through these stages quicker as time goes on. It's an important part living life to the fullest. 


I supposed I should be happy I passed through the stages well before the end of the trip. Having FSH does make one resilient.


I like to think there is a sixth stage which is opportunity. I want to believe something positive can come out of every experience. 


When I look back on the trip, I can only see my nephew's smiling face, his infectious belly laugh and his passion for life. He inspires me every day and reminds me happiness is a simple formula and I am so grateful for that.


The experience made me feel like I made the right decision not trying to raise a child on my own at this stage of my FSH. I am glad I spent the money on this trip because it is a memory I will cherish forever. I am glad he adapted to my circumstances and found ways for us to share our own special things that weren't as physical, I think it will make him a more compassionate person. I am glad to have one more adventure to look back on.


Maybe this experience was like 'dipping a toe in the water' to get a taste of what the next stage of immobility would be like. One thing is for sure, I am getting a sleek, red scooter. If I am going to get one, I better look good in it.

Disneyland Part 2 - The Reality

As I wrote in my previous post, my trip to Disneyland with my nephew was planned out well. The itinerary, the transportation, the company.. all good.


I had planned to spend the first day calibrating myself. Doing the walk around Disney and determining what, if anything, I would need to assist me. The other aunt decided that we should just rent the scooter provided at Disney. The truth was, everyone rented those scooters. Disney is huge! So what was the big deal?


I didn't think the experience would be as jarring for me as it was. I have always tried to prepare for mobility assistance as an inevitability to avoid such a moment. But I guess you just never know how you are going to react when actually in the moment. The scooter was easy enough to handle and thankfully my nephew loved riding around in it. But, I caught my reflection in the window and just couldn't believe it. What was I doing on this contraption? I shouldn't be using this, should I? The reality was, I would have struggled walking the whole park on my own. Even using the stroller to keep me balanced, it would have been tough. Why did I want to struggle if I didn't have to?


I thought it would give me freedom. But for the first little while, it made me feel trapped. Like I was trapped in a body and in a life that wasn't right. I thought I was over all that. But I guess it is a reminder that FSH comes in phases and with every phase, you have to go through another emotional and physical adjustment.


There were so many places I couldn't get into. So many things I had to imagine instead of experiencing. And the worst part of all, the new reality that not only was walking a problem, but I discovered a whole new set of limitations: no rides that were too low or too high, no standing in line because my nephew needed to be carried which I couldn't do, no swimming with him since he needed to be held, no giving him a bath or brushing his teeth because I couldn't kneel and the worst? No big bear hugs from my nephew while I was standing because I would fall over.... which I did. 


So was that it? Was that going to be my memory of The Big Dream?

The "Whys"

You've read my posts about my nephew and my new niece, they joys of my life.

The first three years of my nephew's life have been amazing for me. I wish my condition didn't progress while he ages, but it is. I am able to do less and less with him. With my niece, I am doing even less. But I have enjoyed everything I have been able to do with them, and continue to try and create unique experiences for them that remind them of fun times with their auntie.

My nephew seems to be getting smarter and more active at a much higher rate than his years would indicate. I think I have mentioned he can knock me over with one of his tackles. At three years old, he plays hockey, lacrosse, baseball, gymnastics and he skates and swims. He has boundless energy and an amazing spirit.

He also has a soft soul and knows when things aren't quite right. In the last year, as my leg and core muscles have weakened more and more, we can't rough-house the way he likes. I can't carry him and I can't sit on the floor and play with him. I would say, 'we have to be gentle because auntie's muscles are broken.' He tries to be careful, but I sure hate spoiling his fun.

Now that he is becoming more articulate and perceptive, he asks, 'Why? Why are your muscles broken?' Every adult knows kids are full of 'whys'. Why this, why that... how do I tell a three old why my muscles are broken and why I can't fix it? Why I need a cane. Or why I need a wheelchair. I guess it is everyone's instinct to want to protect a child from the cruel lessons of life.

But I am hoping if I can explain my story in a way he will understand, it might make him more compassionate and considerate of people who are different than he is. Hopefully, it will make him understand we all have special skills and when God may take one thing, he gives you something else and it's important for all of us to try to find that something else. Not just in other people, but in ourselves.

The Blanket - Part Three

Hoping this is the last post under The Blanket series of posts.

Today I welcomed my niece into the world. She is beautiful and entered with so much sweetness and charm. A friend told me she believes cute babies are nature's way of encouraging people to keep the population going. This little one will do that for sure.

Overdue, she emerged far less scrunchy than some kids. My nephew enjoyed meeting his new sister and I hope they find new adventures together and that I will be a part of them.

As I left for the hospital, I knew there was something I had to take to my niece. The blanket my friend had made for me when I started my adoption process more than five years ago. If you have read my Blanket posts, you will know what this blanket symbolizes.

It felt like it it was meant for her, by the same destiny that refused me to have my own daughter. I am trying to reconcile this in my mind. Why some things are meant for some and not for others. But I guess there are many answers to that question, none of which are good enough at a time of emotion.

I gently covered this little princess in the blanket. The soft, cuddly blanket knitted with so much kindness for me. At least I could pass along that same kindness and love to my niece. I hope with this, I can get some kind of closure for that part of my life.

I feel selfish knowing I will never experience that joy and pray that the joy I will get as an aunt will be enough.

(by the way, this picture is not my niece, but a cutie just the same)

Do you believe in magic?

An odd start to a post, but I thought I would float this idea to you for your ... amusement.

I enjoy a good adventure and often feel like one can make their own epic adventure just by having a good chat with a friend, losing yourself in a book or those 'zen moments' where it is just you and your imagination.

I also get a real kick out of psychics and their visions of the future.

Before you roll your eyes and stop reading, hear me out.

I am not one of those people who would change my life because of what a fortune teller said. I value it more for fun more than anything else. I admit, there is something about someone, particularly a stranger who might be more perceptive then the average person, to tell you something positive about your life. Perhaps saying the right thing at the right moment gives hope when a person needs it most.

It is a dangerous thing though, so not for the easily influenced or faint of heart. But I wanted to share my experience.

I didn't visit my first psychic until five years ago, around the time when I was going through the adoption process, at a cross roads with my career and at the end of a long term relationship. There was a lot going on in my life and I was so curious to hear what this lady, a cuban woman who grew up in the Middle East, saw in the bitter coffee grounds left over after I choked down a few sips of her awful concoction.

She told me vivid stories about seeing me climbing a steep mountain to get to a house at the top. She said I would struggle to get to the top and I would want to give up but I would meet a man with a moustache who would help me finish this journey.

I never met this man, or know of this house, but it is parked in my memory for the future.

She told me I would get the promotion I was up for but then I would lose it very quickly, but my salary would be better. I thought that was odd, but true to form, I got the promotion, was laid off a few months later, got a new position in the same company at more money.

As with all 'visionaries', and I have seen a psychic, clairvoyant and astrologer, they tell me the same thing with my health: I will always have health issues and it is a source of frustration for me, (and sadness for my family) but I was stronger than anyone imagined and I would live a long and happy life. The last two I met, said that through natural healing and yoga, I would see a major improvement until a cure was to be found which would be in a few years.

I had already started yoga and natural medicines, and a few months after that reading, researchers had a few FSH breakthroughs. I was pretty shocked since I had resided to the fact that there was no cure.

They all told me I would never have trouble with work and would always have money. But I would never be rich since I would use all my money on my health and my loneliness. Boy, is that true! It's expensive to have a disability.

And, kids. As I mentioned, I had just started the adoption process. The psychic had a fit when I asked her if I was going to have kids. She said there was no way I was going to have children, not even through adoption. But she said she saw a beautiful child with curly hair who would be my life.

What? That is what I dreamed my daughter would have, bouncy curly hair. I figured she didn't know what she was talking about. But, she insisted that if I would ever be a mother, it would be by marrying someone with a child. (The clairvoyant and astrologer said the same thing, they saw me with kids, but not biologically my own.)

Well, I just ignored them and threw myself into the adoption and being a mom. I was so determined, how could it not happen?

But she was right and as you know from previous posts, the adoption didn't go through. I guess there are some things that are predestined.

The curly haired child? It took my a couple of years to realize it was my nephew, the love of my life.

And as for marrying a man with a child? Funny thing about my new boyfriend ....

But the most interesting thing they all said was that I am supposed to be doing more than what I am doing. That I am holding myself back from something important. They were so adamant about it, but couldn't tell me anything more about it.

I have yet to find out what that is, but I am looking forward to that journey of discovery.

Is it vain to want freedom?

I know it may sound like an insane question. How can the quest for freedom be a vanity exercise? But for many people, myself included, it has been an accusation thrown out in response for wanting things that may not seem like a big deal.

It's not a big deal for some. But for others, it's not being able to do the small things that make the biggest difference.

This came to the forefront for me after reading a fellow FSHers novel Wobbly Legs on a Firm Foundation. The author, Nia Stivers, talks honestly about her experiences with FSH, the perspective it gave her on life and her relationship with God.

Towards the end of the book, she talked about two operations she had, one for her shoulders (scapular fusion) and one that was new to me, a tendon transfer on her feet to correct foot drop.

When she spoke to her surgeon about it, he commented that she would likely have trouble adapting because she could no longer wear heels and since she was vain, she wouldn't be able accept that. She was understandably shocked. Sure, losing the ability to wear high heels isn't great. I myself find it very challenging to be stuck having to wear flat shoes when high heels are 'symbols of sex, status and style' and like it or not, it can help give a woman confidence.

But nevertheless, how stupid did this doctor think she was? Did he really think she was going to turn down the opportunity to walk without falling down because it meant no more Jimmy Choos? I am sure he was trying to make a point, but a rather poor approach if you ask me.

It reminded me I was told something similar when I was getting my scapular fusion. It was vain to want to get this operation to improve my looks.

Except that's not what I was doing it for.

I wanted to be able to wash my hair... Lift my arms above my head so I could get things off a shelf without asking for help... Feed myself without pain... Dress myself without feeling like a contortionist... Carry a child in my arms... Hug someone.

That last one, or the inability to do that last one, became abundantly clear to me at a FSH conference I attended. It was the first one I had been to and I was looking forward to meeting an amazing woman I had 'met' online on the FSH Society online community. She was coming, in her wheelchair, but she would be there and I would finally get to put a face to a name.

We had a great time, giggling like school girls and looking at the most handsome man, also in a wheelchair. He looked like a movie star. We were making up the most fascinating story about his life. It is one my fondest memories of her.

As we were leaving, I bent down to give her a hug and she looked at me, somewhat expressionless (FSH will do that do you) and said, "Sorry I can't hug you back. I can't lift my arms."

I thought of how awful it must be to not be able to hug her children, grandchildren or a friend. Not to be able to express her emotions in such a simple way. To those reading this and thinking, 'What's the big deal in a hug? Or being able to life your arms?' I say, try it. Try taking all those things out of your life, all those small things. Tell me if it doesn't make you feel like you are a prisoner in your own body.

In fairness, I know the doctor's sentiment in part comes from the fact that in the early stages, FSH doesn't seem to exist. You look fine to rest of the world. It is a blessing, and a curse, to not have the visible disability. Anne Harland articulates this in her video, Assumptions.

I hope you don't misunderstand this post. It's not meant to blame or shame anyone. Just meant to give some perspective of the importance of the little things.

The Blanket - Part Two

It occurred to me at lunch with two dear friends today that I have not completed this post.

In some ways, the world is increasingly becoming a smaller place. It is not uncommon to have many friends, old and new, in various parts of the world. I am fortunate to be able to pick up where things leave off with friends I may only see once or twice a year. As one friend put it, it is like reading a really good book, putting it down for awhile and picking it up to always find another exciting chapter.

Very true.

But it is also seems like a dumping of updates and for me the last year has been filled with so many twists and turns, I feel like I am shooting cannon balls.

Good thing my friends are resilient.

I was asked about the adoption and where I was at. Anyone who has gone through an adoption, or lived through the process with someone knows, international adoption is a long, emotional, process full of red tape and frustration. Throw in being single with a disability and it is even more of a whirlwind.

My process had the usual frustrations, but I was fortunate to have a great social worker. When I started the process it seemed to just go along in the usual manner. I did end up having to switch countries where I was adopting from and I had to adopt a toddler. But, I thought the challenges of having a disability would be easier if the child could walk already.

Who knew it was my own ability to walk that would become the deciding factor .Well really, my ability to run. Which I realized I couldn't do as my two-year old nephew took off one day down the grass hill and onto the road. I was almost paralyzed because all I could do was walk as fast as I could, pray I didn't trip and yell at him to stop. He giggled with delight because he figured I understood his game and was playing along. I was mortified. All I could see was the vision of him being hit by a car and it would be my fault because I couldn't keep him safe.

Before you think I gave up too fast, I never change course until ten things push me off course. That was only one. Fear of being unable to respond quickly, fear of not being able to afford my disability and raising a child, sadness of being the reason my child would have to compromise because of me and on the list went. So much fear and sadness and because I could only feel the infinite love for my nephew, the thought of not being able to keep another I loved as much safe, I made the painful decision to withdraw my application.

I was the next in line for receiving a proposal for a child.

My program manager at the adoption agency was very upset. We had developed a strong bond and this was certainly a tough process with her being a main character. I suppose it takes a special kind of person to dedicate their life to matching children and parents so I shouldn't be surprised she took it that way.

I cried for a long time. I felt like such a failure. I doubted my decision all the time and most of all I doubted my faith. In myself and in God as I had initially wanted to leave the decision in his hands and ultimately, I made the choice to give up.

My daughter was already born. She would have been two or three when I received that proposal. She was alive when I started the process. I felt I knew her. I named her and I saw her in my mind every day. When I made the decision, I felt I abandoned her. Something inside me died.

I let so many people down. My brother and sister in law who were waiting for a niece. My parents who were waiting for another grandchild. My family who was looking forward to adding another jewel to our growing family and my friends who were inspired and wanted me to see my dream fulfilled. And myself - I never imagined in all my life I wouldn't be a mother.

Everyone supported me and my decision. They blamed the system that made me wait for almost five years. But the system couldn't change the FSH. It was progressing along, despite my best intentions.

I gave myself a year to get up off the mat. I'm just short of that and it's still something I don't like to talk about. I guess there are some things you don't get over, you just learn to live with and hope the experience makes you stronger. I know now, as the FSH continues to progress, I made the right decision, but it is still painful.

I am fortunate that I have this amazing nephew who saved me, he is truly my little angel (even though he can knock me over now) and another niece or nephew on the way. I am blessed to have access to them and my friends' kids. It's not so bad being the cool aunt.