I’m Not Blind…

This past Sunday my mother and I went to go see a show in Boston.  My mother had gotten me tickets for Christmas and I was very excited to see the show.  I have already brought Chantey to a Broadway show and everything ran smoothly so Boston would be a piece of cake.

We arrived at the theater thirty minutes before the show was going to start.  Enough time to get in and settled without having to wait too long.  Once our tickets were scanned I figured we would simply join the crowd in finding our seats.  Instead, one of the theater workers pulled us aside.  The gentleman passed me off to another woman who he said would help me out.  Okay, I thought, if this is their policy I’m not going to stop them.

The woman who I was handed off too then tried to grab my hand and lead me over to a table on the edge of the lobby.  I was so perplexed by this woman.  I didn’t want to hold her hand.  I’m 22 and I could see her just fine.  When I would try to gently separate our hands she continued trying to reach back for me.  Finally, I reluctantly let her have a finger.

Once we got to the table I could see a another woman with a seeing eye dog waiting for the crowd to clear so she could go to her seat.  The woman who worked at the theater asked me my name and then gave me a listening device on the table.  Normally, when I go to a show I don’t use the headsets they give out to people who are hard of hearing.  I feel like I don’t end up hearing the dialogue and lyrics at the same time as the actors are saying them, that it’s horribly dubbed basically.  I figured I would take it, place it in my bag and simply return it at the end of the night.

That’s when I noticed something.  There was a sign on the table that said audio described performance.  For those who do not know what this means, the headsets allow the listener to hear someone describe what is happening on stage in between the dialogue.  I shook my head figuring this table was for everything disability related.  I then turned to back to the woman who was telling me that they could get me a braille program if I needed it.  That’s when I realized the horrible assumption this woman had made.

She thought I was blind because she only saw the dog and nothing else.  She ignored the fact that Chantey’s vest clearly has Hearing Dog printed on it.  She ignored the fact that I had no problem following her when our hands were not connected.  She ignored

Chantey's vest that clearly states "Hearing Dog."

Chantey’s vest that clearly states “Hearing Dog.”

the fact that I had made clear eye contact with her many times.  This woman choose to only see my dog and, even though she could not legally ask what my disability was, not understand that there could be dogs for other disabilities.

At this moment, I politely informed her that I was not blind but instead had a hearing loss.  I asked for clarification about the hearing device being for the blind and when my suspicions were confirmed I returned it to the table because I would most certainly not need it.  I told the woman that I didn’t need that kind of assistance.  She asked me what kind of assistance I did need then and I told her I didn’t need any.  That I only needed to go up to my seat with my mother.  I could tell that this threw off the woman but she simply nodded and had my mother and I follow her.  By the time we were on the ramp to our seats she finally regained enough composure to inform us about how long the first act would be and ask for my ticket to double check the seat.  Once we were seated I thanked her and she left.

Of all the assumptions I thought I would encounter about Chantey and I, blindness was not one I anticipated.  I suppose that it is a logical assumption since it was a special audio described performance that day but I would have figured that it was obvious that I was not blind.  Both the woman and I learned something that day though.  I learned that people will make assumptions about what my disability is despite clear clues because of Chantey.  And the woman learned that not all service dogs are for blind or visually impaired people.  I guess education will be the story of my life now, so that hopefully this won’t happen in the future.

Cystic Fibrosis Lifestyle Foundation

There’s an organization called the Cystic Fibrosis Lifestyle Foundation (CFLF). They award eligible CF patients grants up to $500 a year for things like gym memberships, dance classes, horseback riding lessons, etc. in order to keep active and healthy. I only just recently learned about this foundation at my last clinic visit. After having done yoga alone in my living room for the past year or two via youtube videos, I have applied for a grant to take yoga classes. I haven’t heard back yet, but I don’t see why they should deny me. The last page of the application was filled out by one of my doctors, and on the question “On a scale of 1-10, how compliant is this patient?” he answered with a 10. I found a cute little yoga studio nearby at which to take classes. Now I’m just waiting to hear from CFLF about my application. I’m really quite excited about this. Any CF patients that haven’t heard about this before, give the website a look! It doesn’t cost anything to apply, and they cover a variety of classes/lessons/activities.

Edited to add: I got the call this afternoon and my grant was approved. They’re calling the yoga studio to set up my payment for classes.

http://cflf.org/  CFLF

A Month of Pleasantries

The last month has been a crazy one filled with new experiences and understandings.  This personal growth kept me from posting however so I am excited to update and get back into posting regularly.

The greatest creature has come into my life and I don’t think I was prepared for how much she would effect my world.  I was paired with my hearing dog Chantey and went into training on Feb 24th.  Training was more of a boot camp that allowed me to learn about how to handle Chantey in public and how she responds to sounds for me.  It was a draining process in the fact that I had long days of intensive work, but it also was an amazing Chantey footexperience that allowed me to bond with Chantey faster than I would have thought possible.

The organization I received Chantey, NEADS, from uses the Massachusetts prisons to help train the dogs and on the last day of training I had the opportunity to meet the inmate who prepared Chantey for her life with me.  Walking into the medium security prison, I didn’t really know what to expect.  After moving through the trap successfully, Erin, my trainer, and I were brought to a conference room.  In that room sat all of the current inmate handlers and their dogs.  It was definitely intimidating but I was quickly welcomed and relaxed.  I met Pete and saw how he interacted with Chantey.  He loved her and she loved him.  However, they both understood that they didn’t belong together anymore, that Chantey belonged to me now.  For all Pete did though, I am forever in his debt.  He prepared an amazing dog for me and taught her all she needs to know.

Then came the scary part, leaving NEADS and going to my college campus and college life with this new being in tow.  There was definitely a transition period in which the two of us had to figure out a routine and learn each others cues.  I had to rearrange my college schedule to meet her dog schedule and needs.  As much as I hate to say it, she has made me a morning person.  We’ve also had moments where she tested me to see what she could get away with.  This has included trying to sleep with me on my bed instead of on her own bed at the end of my bed.

During my short time with Chantey I am continuously and happily surprised about how everyone accepts her.  I knew I had permission to have her on campus and in class with me but everyone has been very accepting. I haven’t had anybody on or off campus question her validity as a service dog.  People on campus will whisper about us as we walk by but no one has said anything outright rude to us.  I guess I had the assumption that by making my disability visible I would immediately face issues.  Because of this I am being pleasantly surprised that we are being accepted as openly as we are.

I look forward to sharing new experiences with Chantey and regards to my disability in the future. For now though, she’s allowing me to defy any restrictions presents to me due to my disability.

My Answer To…

…”I have no idea what to write about this month!”

This is the picture of my CF corner in the living room. I have meds and equipment elsewhere in the house (the kitchen and bathroom being worth noting), but this is where a large majority of my CF supplies reside. All my port supplies, needles and dressing kits, and my saline and heparin flushes. Also my nebbed meds (that don’t require refrigeration), and all my pill bottles. As well as my nebulizer and my vest. I spend hours a day in this corner of the living room. Welcome to my world.

CF Corner 3:13

Exhaustion and Hope

I had my topic for February’s post all laid out and then February actually happened, completely consuming me for weeks, and now I have two topics to write about. The cool thing is they happened to intersect in a very unexpected way and therefore lend themselves to a single post somewhat nicely. I’ll do my best to make the connection here.

Part I

In late January, I went back to school. Call me crazy (you wouldn’t be alone, I do it all the time), but the opportunity fell into my lap, or smacked me in the face really, and I couldn’t say no. Getting my Masters degree in social work has been a personal and professional goal of mine for many years so I’d be a fool to pass up the chance to join this cohort, designed specifically for the folks living in our rural part of the country. And so I didn’t pass it up. I pulled my cloak of insanity in a little tighter and jumped. So far, I’m content with my decision.

I love the field of social work big time, to put it in simple terms. It’s a vast field, with a million different ways to connect with people, hopefully making a positive difference when you do. I adore it. But while I was getting my undergraduate degree, I had a very different path in mind, imaging myself working with drug-addicted mothers or the homeless population or victims of domestic violence. I hadn’t really made up my mind yet, but I knew I’d find something. Then Maya was born and everything changed. My life changed in ways I’d never imagined, hadn’t given a second thought to before, and truly wasn’t prepared for. I was spinning for a time; unsure of what the hell I was doing, looking for answers to questions I didn’t even know I had, wishing I understood more about my new life. I was lost and I was alone with my feelings. More than anything, I felt very, very alone.

Looking back, with the clarity that comes with time, I understand more about what I wish I’d had. First and foremost, I wish I knew other parents that were in a similar boat. I didn’t know a single soul that had a child with disabilities. I was aware that they existed, but they didn’t exist in my world. I didn’t feel that anyone understood what the heck I was talking about as I went through that painful time of processing my emotions. Not to say that there weren’t people who tried and I in no way mean to diminish their efforts (there are several individuals who always come to mind for me when I think of that time and I will be forever grateful to them for their patience and presence), but I knew that behind their nodding heads and comforting words, they just didn’t know. I needed someone to know. I also wish that I’d had parents to bounce ideas off of and someone to discuss doctors with, especially since so many of us have to travel 150 miles to see our docs and specialists, living in the medically-underserved area that we do. And really, I just wish I’d had somewhere to be with Maya, where we felt comfortable, where she wasn’t stared at, where I didn’t have to constantly “explain” her, where her differences would blend in better, instead of setting her apart. These days, I know Maya stands out and I do everything in my power to hold her up, to let her shine as brightly as I know she does, but we didn’t come out of the gate in that space. I had to come to it in my own time and I know that every parent gets there at a different rate. Every time someone told me that I should relieve my sense of isolation by going to a playgroup, I wanted to scream. A playgroup with a bunch of typical kids and their unknowing parents was the last place on earth I wanted to be. Of course, I’ve been part of a very typical playgroup for the last year and a half and I love those mothers and children dearly, but I just wasn’t ready in the beginning. I wish there had been a “safe” space for the two of us. I know it would have been good for us both.

So I’ve decided that if the community I craved doesn’t exist, I’ll just have to create it. If I felt this way as a parent, I can only imagine there must be other parents with the same needs. Right? I can’t be that different. So I’ve set out on this path. I will earn my degree and get back out into my community and rebuild those professional connections that were lost when I left my job and I will do this thing! The social worker in me can’t be quieted. It’s kind of a problem.

Part II

A few weeks before I started school again, I was at Target, which is certainly a place I see the inside of way too often, and while my items were being scanned, I looked up and saw a man walking past me with his daughter. She caught my eye immediately. She reminded me of Maya. While the details between the two girls were somewhat different, there was still enough of a similarity that I was overcome with the urge to connect with her.  I couldn’t stop staring, though I tried to not come across as a total creep. As luck would have it, the man turned around and started walking back in my direction. I saw that the girl was chewing on a necklace of sorts and I was curious about it, but mainly I felt an overwhelming need to talk with this family. He was about to pass me by again and I frantically finished up my transaction and called out to him, “Sir! Can I ask you a question?” He looked up at me, a somewhat bewildered look on his face, and mumbled something along the lines of, “Um, okay.” I pushed my cart over to him and inquired about the necklace, knowing it was my best chance at starting a conversation with him, all the while watching this girl as she held onto her father’s hand. I was scared. I was scared of being turned away, of being told I was intruding, of causing harm when I meant none. But my fear of missing an opportunity to connect with a local family with a child similar to mine outweighed all of those and so I pressed on. He stumbled on his words again, clearly unsure of how to answer my question about the necklace. He told me with that familiar dismissive wave of his hand, “Well she has disabilities and she’s always chewing on her hand so we thought we’d try this instead.” I looked at him and said, “Yes, I have a daughter like her at home.” I’m not sure he believed me and he continued looking at me with that guarded look on his face.  He didn’t have an answer for me regarding the brand of the necklace and instead asked his wife, who was by then walking over to where we stood after paying for her own items. She looked back and forth between the two of us, that same bewildered look on her face, wondering why this stranger was talking to her husband and daughter. She recovered quicker than her husband and she managed to tell me, in a somewhat exhausted voice, a bit about the teething necklace and while she talked, I knelt down to interact with the girl. I loved her. Without knowing an actual thing about her, my heart grew to include her. A piece of her gentle, inquisitive, beautiful soul took root in me and I loved her. Right there in the lobby of my local Target. She looked in my cart, curious about Julia, who was with with me that day. She ran her hand along the side of it, coming up to me while I kneeled down to be on her level, and she came in for the briefest of hugs. I melted. I wanted to scoop her up, but I’m sure her parents would have definitely cried foul at that. And so, after no more than five minutes, we parted ways, leaving me with a seriously crazy mix of emotions. I knew that that family was exactly the reason why I was going back to school, why I wanted to build bridges between the special needs families in my town. I found myself tearing up as I got in my car, thinking about the way that both of them responded to me approaching them. They were somewhat shocked. They didn’t really know what my angle was or if I my intentions were good. They were used to being invisible, like so many of us are when we are out in public with our children. When people don’t know how to process what they see, they just don’t see you at all. I know all about having an invisible child. It is painful. In the wildest dreams my brain contains, I dream of a time when none of our children are invisible and parents are able to openly talk about the loves of their lives, in the same way that all the other parents are free to do. This is my hope.

I thought about that family for weeks. Really. Every single day. I wondered where they were and if I could have done something more to connect with them. I kicked myself for not ordering the cards I’d been meaning to get, the ones with my contact information on them so that I could potentially set up play dates for Maya. I told several people about my experience with the girl and her family. I wanted to share the wonder of it with someone. Of course, it didn’t really translate to anyone else. They nodded and smiled and indulged me as they often do when I’m off in Thea Lala Land, going on and on about love and connections and the universe. I am surrounded by very indulgent people…

The weeks passed. Graduate school started. I was busy. Life is like that. Then Maya got sick. She came down with a hell of a cold and it was rough, though it appeared to be the same terrible cold the rest of the family had just gotten over. After four days of coughing and a high fever, I took her in, just to make sure nothing was going on that I couldn’t see, because she had largely quit eating and drinking altogether at that point and she hadn’t slept in days. And something was most definitely going on. My baby couldn’t breathe. She was immediately admitted to the hospital for pneumonia and I was terrified. I live under a constant cloud of fear for Maya’s health, knowing things in the deep recesses of my brain that I’d rather not know. I absolutely loathe when any of those fears are confirmed on even the slightest level. My husband was out of town for the evening and I’d left my other two girls at home for what I assumed would be a quick trip to the doctor’s office, so I was on my own with Maya as we were wheeled to the Pediatric Intensive Care Unit (PICU).

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Big sisters bring the biggest smiles

When the time came for Maya’s IV to be inserted, things did not go smoothly. They couldn’t find any suitable veins and an ultrasound machine had to brought in. For a child who doesn’t like to be touched except on her own terms, there was a heck of a lot of touching going on. She was not happy. It took three nurses and myself to hold her down while the fifth person tried to insert the IV. It took forever. Seriously. And the whole time Maya is thrashing with Hulk-like strength. I was heartbroken and I was sweaty. We all were. Eventually the IV was placed, she was taped up and things settled down for a minute. The shift change happened, as we’d arrived at 6 PM and it was now 7:00. The new nurses trickled in and introduced themselves. The charge nurse walked in and started attending to various beeping and dripping and flashing things. Then he came over to the bed to meet Maya. He watched her closely, looking at her face with a strange softness on his own. He told me, his eyes never leaving hers, “She reminds me of my daughter.” I was startled. No one has ever said that to me. Ever. Maya’s one of a kind. She does not look like any other children I know. It just seemed like the weirdest thing to say in relation to Maya. I asked him, “Oh, does she have craniosynostosis?” I figured that had to be the connection. “No, she doesn’t. I don’t know. She just reminds me of my daughter.” Then he looked down at her IV and realized it had gone very wrong. Her arm was bulging with fluids that were being delivered under her skin instead of into her vein. “This needs to come out right now.” My heart sank. He hadn’t witnessed the scene from 45 minutes before. And so it began again. This time, with new faces surrounding her, she was wrapped like a burrito, which meant that it only took three of us to hold her down. She was exhausted, but still had so much power. Jeremy was calm, cool and collected while he searched for a good vein. He blew the first one. I don’t hold it against him. Like I said, Maya could have lifted a car off a baby at that point. Then he met with success. We were done. Again. Third time’s the charm, right? After everyone left, I saw him looking at Maya again and this time, as I watched him watching her, I knew. Jeremy was the dad from Target. I didn’t say anything because I would have hated to be wrong, but I knew it anyway. He told me that his own daughter had genetic abnormalities and that she didn’t speak. He said that he was going to explain everything to Maya because that’s what he does with his girl. And he did. He included Maya in everything he did from that point on. I felt a sense of deep peace wash over me, knowing Maya was in the best hands she could be in, given the circumstances. It couldn’t have been a better match. Because he got Maya. She wasn’t invisible to him. He knew the depth she possessed. He knew the challenges she faced daily. He knew the strength she had. He knew that she loves and is deeply loved in return. He told me that he’d show me a picture of his daughter when he got the chance, which came maybe half an hour later. He brought his phone over to me, his face glowing with a pride I know all too well, and I was shown a picture of that sweet slice of perfection from Target. I said to him, “I met you. That one day in Target. I met your little girl.” He didn’t answer at first, but then he said, “You asked about the necklace,” remembering it now. I told him that I’d thought about his family every day since then and wondered how they were doing. He kind of laughed and said, “Well, we’re here.” Right then the head honcho doc came in and the conversation was interrupted. We never got a chance to talk again during the four days that Maya was in the PICU, but I felt as calm as one can feel with a child in the hospital. I knew she was being taken care of by the very best. She was discharged on a Friday afternoon and was able to spend the weekend recuperating with us at home. She still hasn’t bounced all the way back and is currently sick in bed with a nasty cold so things still have a ways to go before I can say we’re back to normal. I miss my sweet girl. I want her to be well. We just celebrated her fourth birthday quietly at home, all plans of a party scrapped during our days in the PICU. I’m hoping that with the coming of spring she’ll benefit from the sunshine and fresh air and that my Maya will be returned to me.

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Maya at four

As hard as this month has been, it’s also held so much admiration and wonder. I am constantly meeting good people, beautiful people, helpful and amazing people. I can only hope that as I move forward on this path, my choices continue to be validated and that I am able to keep my eyes open for opportunities to connect. This is my dream after all, a cause I feel an immense amount of passion for. I imagine a community of connected parents and of children that benefit from those connections, friendships that blossom, peace that’s made. I’m so excited to get started and I can’t wait to see who else I meet along the way.

 

The Dirty Looks count

Monday was president’s day and because of that my family was able to come to Connecticut to visit.  Jeff was happy to see me as my mother pulled up and I got into the car after class.  We drove to a restaurant where we would meet my older brother who would be joining us.

Once Greg arrived Jeff gave us both the silent treatment for about 20 minutes.  It is something we have grown accustomed to over the past few years.  After the 20 minutes were up Jeff happily reached across the table for Greg and began talking.

There is something you have to understand about Jeff’s talking however.  He is nonverbal so his talking is more like baby babble such as “daba da”.  It can range in volume from being a quite whisper to what can seem like yelling.  And in talking to Greg across the table at that restaurant, Jeff choose to pick the loud form of his talking.

We tried to shush him and tell him to use his indoor voice with little success throughout the meal.  From my vantage point in the booth I could see a good chunk of the rest of the restaurant.  It was there that I started my mental count of dirty looks from the other patrons.

While we awaited our food we got about 20 dirty looks to various degrees.  Some were small glances over at our table which is something I have grown used to.  Not everyone has a Jeff in their lives so they become curious as to what exactly is going on at our table.

We got about 5 mid-glares.  I categorize this one similar to how some people look at rowdy children in a store.  It’s a look that says “can’t you learn how to control your child.”  It can be rude but for the most part they look away quickly so it can be gaged as not too bad.

We had two full on glares.  These were looks that told me that those individuals didn’t think we should even be sitting in the same space as them with Jeff.  These looks can hurt the most and used to bother me the most.

When I was younger I used to hate the looks my family and I received when we went out in public and Jeff didn’t behave like a typical kid.  It made me feel self conscious and, to an extent, ashamed that Jeff was my brother.

Today however, I no longer believe that.  This is who my family is.  Just because Jeff is different should not and will not stop us from going out to eat together like any other family.  We will try to keep Jeff as quiet as possible when talking as to not interrupt your meal too much but I cannot make any guarantees.  Jeff is who is he is and I wouldn’t trade him for the world.

There is a bright side to these looks though.  Not all of them are bad.  I saw at least three people give a smile towards us as our meal went on.  I like to think it was clear to those individuals that this was a family reunion of sorts and that Jeff was clearly just excited to be reunited with Greg and I.  It’s smiles like the smiles we received that give me hope that one day I won’t have to have a dirty look count.

My Other Family

In January, before my boyfriend Ryan went back to school for the spring, we went to dinner at his sister’s house. Everyone ate. I had a single piece of ciabatta bread that his brother made (which was very good), and that was it. No one commented on it, knowing that I wasn’t intending to offend. They know it simply means my appetite is garbage. As his sister was putting dishes away and whatnot, she asked “Em, is it possible you’ll be hungry and want leftovers later?” She was ready to pack me up food in the case that I might actually eat later that night. When I said “Nah, thank you. My appetite in general is just crap right now. I’m off my Marinol.” That comment was received by “Okay, gotcha.” End of discussion. They know it sucks. They know it’s a problem. But they treat it like anything else. I don’t get blamed for it. Or pitied because of it. Ryan’s mother is the same way. She is always ready, willing, and more than happy to feed me if I’m up for it. But she never pushes or makes me feel like a disappointment when I’m not interested.

Ryan never expected his family wouldn’t be good about it, but that same night when we got home, he commented on the subject. He mentioned how pleased he is that the acceptance of my CF-related needs and quirks comes so naturally with them. I agree. No one treats me differently or acts weird. They just accommodate where I need it, and act like it’s any other thing. Like they don’t swear around kids. They don’t smoke around me. It’s just a thing that happens. I’ve seen a lot of CFers whose own families are terrible about the complications their health causes, let alone in-laws or friends, etc. My family has always been supportive. I am so fortunate that my chosen other family is as well.

And finally, simply for fun, here’s a picture of me with stuffed lungs one of my CFers (shout out to Perks!) sent me a few years back.

Lungs for my Birthday! 1-15-11

Moving Forward and Looking Back

I haven’t posted in what feels like ages.  So much has happened and we are rebuilding, at least medically speaking, from the ground up.  We’ve relocated, four hours north of Miami.  We’ve moved into a nice house in a nice neighborhood- the kind of place where people wave to each other and kids play in the streets all day.

My older two girls are adjusting to school (FLVS and a new elementary school), and Robyn is home with me during the day.  I have been working on setting up a change in the girls’ insurance, finding them a new primary care, GI, geneticist, and now- more therapy evaluations.  See, I was hoping when we moved that since Robyn was and is doing so well, her new doctors would look at her objectively, and decide whether or not we needed to continue therapy based on her current assessment.  Two pediatricians and one GI later, I had about four prescriptions in hand for OT, PT and feeding therapy.  Those evaluations won’t be until late February and early March.

Maybe I wanted to believe that in moving, we had left that world behind us.  Maybe I wanted Robyn to have the life of a typical toddler, one where her every move wasn’t corrected, scrutinized, or seen as some sort of problem.  Maybe I wanted a break from the therapies, which often led to more specialists, different suggestions…new treatments.

The doctors ordering the evaluations did so because it was on par with what she was receiving in Miami.  I am sure it also had to do with her diagnosis’ of the deletion, the oral aversion and the developmental delay.  I was somewhat let down because where I saw enormous change in her for the better, a “label” was, in my mind, holding her back from putting this all behind her.

Then I got an email.  A father had read one of my blog posts and reached out, asking me to contact him and explaining his son had a duplication on 7Q11.22 (where Robyn’s deletion is).  It popped up on my phone, at about 10:30 on a weeknight, and within minutes I was notified he had also found the Facebook group I started with another mom, and requested to join.  I accepted him to the group and emailed him that we could touch base the following day.  That night I went to bed remembering that feeling.  I remembered what it was like to hear that something was “abnormal” about my daughter’s genetic make up.  I remembered being told the future could not be predicted and that so little information was out there on this particular abnormality.  I remembered the sinking feeling in my core when the geneticist said, “let’s just watch her and see what develops”.

Today, I called that father, and gave him every piece of information I wish I hadn’t had to dig for.  He wrote down a geneticists name we had seen who had more information than the local children’s hospital, we talked about CDO and Unique, and finally, we compared notes on our kids.  I listened to him describe how he was scouring the internet, much like I had, to absorb everything related to what this diagnosis could mean for his child.

Perhaps I had forgotten, in wanting for a moment, a little bit of “normalcy” (whatever that is), my own firm belief that everything happens for a reason.  That our journeys are lessons, to ourselves, and to others.  This dedicated father brought me back to reality.  We, as parents of kids with rare chromosomal abnormalities, need that connection, if only temporarily.  We need to be able to ask questions without judgement, to share experiences, medication trials and tribulations, therapy victories.  We need those, “aha!” moments and those shoulders to lean on, even virtually, when fear of the unknown is pulling us under.

Yes, Robyn may have to continue PT and OT and feeding therapy, depending on how her evaluations go, but that doesn’t take away from how incredibly far she’s come.  Yes, she is still on the Pericatin, but she is no longer on the high dose PPI.  Yes, she still has shoe inserts, but she no longer has a feeding tube or wears a body brace three hours a day.  To me, that’s some serious, kick-ass progress, and it makes up for all of the hours of therapy and the (still) sleepless nights- 100 times over.

 

Left behind

When I was 10, my older brother and I played soccer.  We had been playing it for years already and it was time for my brother to get a new pair of cleats.  This meant a trip to Sports Authority.  When we arrived we began heading towards the cleats when I got distracted by their soccer ball collection in the front of the store.  I told my mother I was going to look at the soccer balls and she stopped for a moment with me.

After I had my fill of fun colored soccer balls I turned around to tell my mom I was ready to move on.  To my surprise she was no longer beside me.  I looked around but couldn’t find her.  I had even dared to look at the surrounding aisles to see if she had simply moved ahead.  I couldn’t find her.

Slowly, panic began to take hold of me.  Where was my mother?  Was she still in the store?  Why couldn’t I hear Greg and her talking so I could figure out where they were?  Should I go out to the car and wait there?  What if they left the store without me?

Finally, I finally got the courage to go up to the front of the store and ask them to page my mother.  She came to the front quickly and I was so relieved to see her, to know I hadn’t been left behind.  She gave me a hug and apologized for scaring me.  She said that she had told me that she and Greg were moving onto the cleat section and to meet them there.  Because I was so caught up in looking at the soccer balls and not facing her I didn’t hear her tell me this information.

I thought that moment would be the last time such a thing would ever happen to me.  I was proved wrong this past week.  I was at a conference with my friends and we had some time to kill before going to the performance that night.  We decided that we would go browse around the Toys R’ Us for a bit.  After looking at some weird baby dolls my friends found some kid see-saws on display.  My eyes caught the hard plastic diorama animals I used to love.

When I turned around my friends were no where in sight.  I figured that they had moved onto something else in the store and I did a quick sweep.  As I made my way back to the front I realized that I could not hear them in the store anymore.  Did they leave without me?  A store clerk asked if I needed anything and I told her no, that I was just browsing.  A moment later the automatic doors slid open and two of my friends walked back into the store to find me.

They had done what my mother had done ten years before.  They told me that they were heading out but with my back turned and attention elsewhere I hadn’t heard.

When I walked outside the rest of the crowd was at least 3 parking spots away, getting ready to head to a different store.  Was that how long it took my friends to realize I was no longer with them?  What would have happened if they hadn’t realized I was missing until they had gotten all the way to the new store?  What if they had decided to head to the performance and I hadn’t been one of the drivers?

I had hoped that I would never be an forgotten child again.  I know I am an adult now and have no problem taking care of myself but I still felt like that lost child for a moment.  Unfortunately I know that this probably won’t be the last time this happens to me.  I just hope that there won’t ever be a time when I am truly left behind.

Coming to terms

When I decided that I wanted to pursue a service dog it was a huge step for me in accepting my disability.  It seems so strange to say that.  That it has taken me the 17ish years since my diagnosis to come to terms with my hearing loss.  I mean, I have known all those years, and been reminded periodically during that time, that I have a disability but I never saw it as one.  I touched upon this briefly in a prior post but it is a topic that is coming about again recently.

In preparing for my service dog, I’ve been trying to mentally prepare myself for what my life will become.  During these times I think about the things I currently do in my life and how they will be changed with the service dog.  Things like interviews were originally a no brainer but now there are questions.  Do I bring the service dog?  How will the dog be perceived?  As a hindrance to me doing my job or an asset to the position?  I then think about ADA and how service dogs are supposed to be there all the time.  They are supposed to be used because I would not be able to function otherwise.  But when that idea pops into my head I say to myself, “I’ve been able to function so far without one.  Do I really need it?”

That thought and ones like it are leading me to a place in which I am accepting that I do have a significant disability that requires a dog.  I may be able to live life now but how much is my life really hindered without the service dog?  That’s when I realize it really is.  There are times when I don’t hear someone who needs me.  I get scared by an ambulance speeding past me and I never heard the sirens.  I worry that I won’t feel my alarm clock vibrate in the morning or my cell phone alarm when I’m traveling.  I worry that I’ll miss important phone calls, especially when my phone isn’t in my pocket and on the loudest volume.  I worry about stepping out into the road on campus and getting hit by a speeding driver.

It is so strange to come to terms with the fact that I do have a significant disability.  At the same time this isn’t a whole new identity that I will be adopting; it’s just solidifying the identity I have always had.  In taking on this new part of my life, hopefully my dog will provide answers to these questions and worries.