It’s been a while since I’ve blogged and I have so many thoughts to get across. The most important is to Think Positive. It has been something that I’ve been reminded about ever since Cole had his first seizures. Life can completely suck sometimes but no matter what, the positive thoughts must always shine through.
It’s been a year. An entire year since this post, which told the story of Maya’s hospitalization for pneumonia and the reasoning behind my decision to return to school. I remember telling Jenn that I’d need to cut back on my writing for Defying Disabilities because graduate school was both taking all of my time/brain cells/energy and sapping any desire I had to write for recreational purposes, which is kind of an unintended consequence when you write papers all week. But my intention was to submit a post quarterly, not to stop for good! I’ve missed writing about Maya immensely, but honestly, the thought of trying to capture the last year of Maya’s life in one tiny post feels like an overwhelming task and I’ve put off doing it for fear that I leave too much out, that I’d fail to paint the whole picture for you. So instead of pressuring myself to do it perfectly, I’m going to do what I can, maybe just covering a few of the things that come to mind and leaving the rest for another time. As a recovering perfectionist, this is an opportunity to practice what I preach—capture what you can and know that good enough is most often good enough.
Maya’s stay in the hospital last February was a big event for our family, leaving a mark on all of us, perhaps me most of all. It took Maya a few months to return to baseline and it was difficult to watch her languish for a time, her eyes dark and sunken, tiny ribs visible beneath her pale skin, all development effectively grinding to a halt. I watched her like a hawk, how much she ate, how she was breathing, how often she remembered to use skills she had already mastered. Every refused bite of food was mentally noted and with each cough I worried. But one day, closer to summer, when I wasn’t even looking, Maya was back. And that girl was ready to rock and roll. Little did I know, Maya was ready to make up for some lost time!
Summer arrived, Maya was healthy, life was good. She finished up the school year at her integrated preschool, the same program she’s been attending since she turned three. But with the end of the school year came an entirely new issue to deal with, one that I’d seen coming, but had grossly underestimated in severity. I had nowhere for Maya to be during the day without school in session. This hadn’t been an issue the summer before, since I was home anyway, but this year was different. I had back-to-back classes all summer long, which meant a ton of homework, and I was also set to start the first of two internships for my graduate program. I needed childcare for Maya and I needed it quickly. Now, it’s not as if this all hit me the moment Maya came down the steps of the bus on the final day of school. I’m not that ill-prepared for major transitions. I’d started the ground work a couple of months before, asking around for recommendations and getting a feel for what was out there. But despite the work I’d already put into the search, I’d come up empty-handed. No one wanted to take Maya. The daycares in town all required that the children be potty-trained, which Maya wasn’t. I spoke with the daycare center that Julia attends, hoping we could work something out since I knew that they’d had special needs kids attend in the past, and the director told me she’d ask the teachers and they’d make a decision. She didn’t get back to me for a week and so I tracked her down and asked what her thoughts were. I was told that they couldn’t “meet Maya’s needs at this time.” I tried to keep my head up high as I walked away from that conversation with the director, but I wanted to cry. My sweet, special, magical Maya wasn’t welcome anywhere. I didn’t know what to do. It was time to think way outside the box. Desperate times call for desperate measures, right? So I came home and got on Facebook. I’m part of a local buy/swap/sell group for moms, which I’m sure most towns have these days, and I knew I’d reach a large audience of other mothers who might have some ideas for me. I provided a synopsis of the situation, describing her strengths, as well as some of the ways that caring for her might differ from caring from other four year olds, and included a picture of my smiling girl. I hit post. And I cried. Big, fat, ugly tears. For a long time. I have never felt so disgusted by a situation in my entire life. I felt like I had just placed an ad for a dog. I felt angry and sad and broken and dirty. I could not understand why it was so hard to find childcare for Maya, that I’d had to basically advertise my child in the hopes that someone would take her. “Hey, look at this cute kid. Can someone please watch her? I swear she’s not too broken.” Luckily, we live in an awesome town and very quickly I had a flood of responses. People offered names and numbers and words of encouragement. One woman messaged me and said that despite the upbeat nature of the post, she could tell how painful it was to put out there like that. We wound up speaking on the phone for a while and she gave me the number of the woman that babysits on Friday nights for her kids. It wasn’t the lead I needed, but for her to take the time to reach out to me and offer support was worth far more in the moment. The world is truly full of wonderful, kind people and sometimes it takes painful situations to remind us of that. But the thing that stuck with me the most during this whole thing, the one message that went through my head on repeat, was that no parent should have to beg for childcare for their special needs kid. Ever. This is NOT acceptable. There should be systems in place to avoid this type of undue suffering. I was once again in a position of being reminded just exactly why I’m pursuing the degree that I am, why I feel driven to create a network of families and medical providers in our town, why I do the work that I do. I don’t ever want another parent to feel like I did that day. We can do better than this as a community. So the issue gets added to my growing list of things to tackle once I’m free of the shackles of lectures and homework and group projects. I don’t want this to happen again.
So where did Maya end up over the summer? With Meg, an amazing, albeit ridiculously expensive, college student with a background in special education. When you’re backed into a corner, you do what you can. But really, she was perfect for what we needed. She came to the house each morning and focused solely on Maya for 3-4 hours each day while I hid out upstairs doing homework. Meg was a great short-term solution for the summer and we were grateful for the time we had with her. Her gentle nature and never-ending patience, combined with the ability to push Maya a bit past her comfort zone, proved to be a winning combination for Maya’s development. I’m certain her brain cells were kept appropriately busy over the long break from school.
The summer wasn’t all work and no play for Maya though. She also got to go on a pretty amazing adventure with her father and sisters. I was stuck at home with school obligations, but the rest of the family loaded up the car and went on an epic road trip for three weeks, which included a family reunion in northern California. They camped along the way, played on the beach, explored the redwoods and apparently talked a lot about bears. Maya came home with a new phrase, which was repeated multiple times a day in our house for the next several weeks—“There are no bears.” I guess Daddy had to do a lot of reassuring while the kids were sleeping in the “deep, dark woods” as Julia calls them. Maya also did a lot of local camping trips over the summer and spent as much time as possible on her bike. She finally got the hang of her Strider and it was hard to get her off of it!
By the end of summer, we were ready to get Maya into a new schooling situation, since Meg would be leaving us. Maya would still be at her preschool, but with it only being a half-day program, we needed something for the morning hours. I was still scarred from my search a few months before, but her father wound up finding her the very best situation we could have asked for. One of the things Devon loves doing with the girls in the summer is leaving the house early on Saturday mornings and going to the garage sales. It drives me crazy and I don’t have the patience for it, but they love it. It just so happened that they wound up at a rummage sale at the local Montessori preschool one morning. He spent some time talking with the teacher there and she said to come by to check it out whenever we wanted. When he brought this up, I balked. I went into full-blown Thea-is-as-stubborn-as-a-mule mode. There was no way I’d send Maya there, where she’d be the only special needs kid in the class and she’d stick out like a sore thumb. All the kids would make fun of her and the teacher would lose her patience with her and we’d get a call after a week saying to come pick our child up because it wasn’t turning out to be a good fit after all. It’s amazing how clearly these scenarios can play out in our minds, especially when there’s fear involved. I wasn’t going to let it happen. I wasn’t going to throw my kid into the shark tank. I was going to stop that pain before it even started. No way. But because I am capable of being somewhat rational, even when I’m convinced that I’d rather possibly place my child into an actual shark tank, I went to the school with Devon to check it out. Or possibly to rub his nose in how terrible it was, but I’m going to go with my intentions being much nicer than that. At least, 97% nicer. So I went. And I liked it. The teacher met us there with someone she’d brought over from the college, who had a background in special needs education. The fact that she’d contacted someone to meet with us showed me that she already had a level of dedication to doing what was right for Maya. The school itself is run out of a house in a neighborhood we enjoy and there are just 12 children total in the class. It’s a very soothing environment and the teacher has been running the preschool for 30 years. I still had my reservations, but I was willing to give it a try. I said that we could start Maya there in the mornings, with her bus picking her up and taking her to her other preschool, and see where things went. I am so glad I took a chance on it. This is one of those times that I LOVE being wrong. Love, love, love. Maya has flourished under the guidance of her teacher and her peers. Really, our experience with BambiniMontessori is a post in and of itself, so I’m doing it no justice here, but I will say that watching how she’s been embraced there, seeing the exponential growth in my child, knowing that she enjoys going to school each morning to be with her friends, well, it kind of makes my heart explode in my chest.
I believe that’s all I feel like cramming into one post. It’s been an incredibly long day, with class and presentations, and my bed is calling my name. I have something else that I really want to talk about, but it deserves nothing less than a post of it’s own. This will have to do for now. Earlier, I tucked my four-year-old Maya into bed for the last time. In the morning, she will be five. It’s hard to even wrap my head around. My sweet baby Maya is growing up. I wish she’d slow down just a little bit. Next weekend we are having a Cinco de Maya birthday celebration and she’s so excited. “I turn five!” she says to me daily. Yep, you’re turning five, kid, and it’s breaking my heart. It’s a good thing you’re also the glue that keeps it together.
Thanks for reading, friends. I’m sorry it’s been a year. I hope to get back to it with some sort of regularity and not let it build up so much. If you’re new to Maya’s story and would like to read from the beginning, here are my previous posts for Defying Disabilities. Sweet dreams!
Newest to oldest:
In the last forty-eight hours I have dealt with discrimination due to my hearing loss and service dog but that is not what I want to talk about. In my frustration and hurt I posted to Facebook that I was angry and upset but left the reasons vague. I needed an outlet without spewing the details. I figured that a few people would see it and say to themselves “that’s a shame that Jackie’s feeling that way” and then move on. I’ve been guilty of that on a few occasions; its the social media world we live in after all.
Instead, I was showered with love. Close friends messaged me asking if everything was alright. Friends who I never considered close until this incident messaged me as well. They all began with “I hope everything is okay and I’m here if you need me”. As I gave many of them the brief synopsis of what was happening all of them were by my side. Some cursed the man with me. Others stated that they were shocked it had happened and tried to make me feel better, saying that it wasn’t worth my time if that’s how I was going to be treated.
As hurt as I still feel about the entire situation the light that came from it was my support network. They always say that people need a good support network to navigate this life and mine proved itself. It showed me the strength I have behind me as people in this world show their true colors. I just hope they know that the support goes both ways, that I will be there for them anytime as they were there for me.
To the Director of Residence Life at [insert] College/University,
I have a passion for helping others and am looking for a position in student affairs in higher education. I am a recent graduate with a BS in Elementary/Special Education and a minor in Drama. I graduated magna cum laude and spent three years working in Residential Life on my campus (two years as an RA, one year in an advanced undergraduate position). I developed a theater based peer education group on my campus that is educating the community on tough social issues such as sexual assault and partner violence. This group has performed twice since its creation (for first year students and then Greek life) and has been asked to perform again for the entire university prior to spring fling 2015.
I have worked with individuals with disabilities for a large portion of my life. This has taught me patience, problem solving skills and given me the ability to see the amazing potential every person has to excel.
My time in theater has taught me the importance of breaking down tasks and working thoroughly and quickly. Additionally, I have learned how to manage and work with limited budgets to accomplish goals and have successful productions. As it can often be with theater, I have also gained the ability to take things as they come and work on the fly when things don’t go as planned.
All of these skills could be seen as an asset to your school but I fear you will not hear them. I fear that you will disregard me as strong candidate for the position I am applying the moment I walk in for an interview. You will no longer remember my resume and the conversation we had but instead my service dog.
I understand the law perfectly well. You cannot discriminate against me because of my service dog (furthermore referred to as Chantey) or my hearing loss. You might say that Chantey is not the reason you turned me away; there was simply a more qualified candidate. Maybe there was but we both know the truth. We both know that Chantey likely played a critical role in your hiring decision.
You see the negative aspects of Chantey. You wonder why I need a service dog for my hearing loss when my speech appears unaffected. You worry that Chantey will be a distraction to others even though you comment that you completely forgot she was under the chair during the interview. You wonder how Chantey would be able to stay up dealing with a situation overnight. You wonder how I am going to move about the campus easily and quickly. You wonder how I would be able to deal with an emergency situation with a dog by my side.
I wish you wouldn’t wonder.
I wish you would see me as a competent individual who would know whether or not I could do the job with my disability; if I didn’t think I could do the job I would not have applied for the position. I wish you would not be afraid of asking me these wondering questions if you are really concerned about their answers. I know the law says you can’t but if I say I am willing to answer any questions, take me up on my offer. If it is something I’m uncomfortable answering or inappropriate I will tell you.
Finally, I wish you would see Chantey for all of the positive things she and I (as the team we are) can bring to the position. Know that Chantey allows me to be sure that party down the hall is actually happening. She is my security that I’ll wake up to the fire alarm, not only for my own safety but also so that I can do my job and ensure the safety of the rest of the building’s residents. She’ll ensure that I wake up to the ringing duty phone, instead of potentially sleeping through it during a long night on call. She makes me more approachable because there are only a few people who would not want to say hello to the dog by my side. She can provide comfort to students and individuals in crisis by petting her (not something that she is fully trained to do but if the situation called for it, it can be utilized).
This list could go on. All you need to do is look at the two of us as a capable team ready to thrive at your university. Any struggle we run into can and will be overcome with your support and my perseverance.
I have never let my disability stop me from doing what I am passionate about and I hope you will not be the barrier that does. Forget I have a service dog and only take into account my resume, my skills and our conversation.
I look forward to working with you in the future and please do not hesitate to ask me anything as I will likely be more than happy to give you a response.
The Job Candidate with a Service Dog
People often wonder why I don’t work, given my “good” health. I put that in quotation marks because compared to a “normal” person, my health is garbage. But compared to many other CF patients, my health is pretty damn good. For a 30-year-old CFer, I am definitely what you could call “healthy.” A lot of people see my lung function numbers and tend to give me funny looks when they hear I don’t work. Allow me to educate a bit.
Yes, I’m in good shape now. I am in good shape BECAUSE I have stopped trying to hold two jobs (counting school and my health). CF is often in itself a full time job. My body is constantly fighting the bacteria in my lungs. These are bacteria that most people breathe in and immediately breathe back out, no harm done. But because CF lungs are trash, we breathe that bacteria in, and it stays. It stays and it grows and it takes over. So yes, my body is quite literally constantly fighting. This is exhausting. I require more sleep than the average person. I am not being lazy. My body needs this excessive rest in order to recuperate. So I spend large chunks of my days sleeping, doing my physical therapy, doing yoga, doing my nebulized medications, cleaning all my equipment, and trying to get myself to eat. That’s quite difficult to do properly if I’m also trying to hold a “regular” job.
I was in graduate school from September 2009 until May 2010. In those nine months, I went on antibiotics three times for a total of 52 days. This was all while doing a 36-hour-a-week schedule (which still isn’t technically full time, I might point out). Those nine months also brought about the following:
- My first hospitalization in five years
- Two of those three rounds of IVs each started with a week of being inpatient
- My first ever case of pneumonia
- A three-day lung bleed (my longest bleed ever, usually they only last hours)
I graduated in May 2010, and even once that ended, I spent a long time trying to get my health back. In 2011, I was on antibiotics six times, for a total of 104 days. In 2012, I was on antibiotics five times, for a total of 91 days. In 2013, I was on antibiotics twice, for a total of 28 days. And in 2014, so far, I’ve been on antibiotics once, for 14 days. If you’ll notice, the number of days I spent on antibiotics relatively gradually decreased in the years following my busy schedule. In 2011, it was 104 days, and this year so far, it’s been 14. See how drastic of a change that is? While I would enjoy being able to work, to me, having a job is not worth killing myself. That is why I do not work.
Sometime in July, I was one of two guest speakers on a friend’s podcast. He has a podcast called Joshland Unfiltered, and it’s about various CF topics. This episode was about CF and using a sense of humor as a coping mechanism. At the end, Josh asked if we wanted to plug anything we wrote for, so of course I plugged our DD blog.
If you are so inclined to listen, you can find the podcast using these two links:
- https://itunes.apple.com/us/podcast/joshland-unfiltered/id567358131?mt=2 on iTunes
- http://joshlandunfiltered.libsyn.com/ if you don’t have/like iTunes
I woke up this morning around 5:00 am. I got up to pee, got some juice, and then got back into bed. I couldn’t fall back asleep until 6:00 am. I was sitting straight up, propped up on pillows. I could not stop coughing. Sometimes just waking up gets me coughing, but more often than not, it’s standing up to walk anywhere that gets the coughing going. I always have a coughing attack first thing in the morning, but I try to avoid them when I’m planning on going back to sleep. This morning, I couldn’t avoid it. I simply had to pee. I was awake against my will for an hour. I used my little Albuterol inhaler. It doesn’t do much for me most of the time, as I’m on nebulized Albuterol and that’s much stronger. That being said, occasionally I will use the inhaler as a last resort in a “please please let this work” sort of way. It helped a bit, but as I stated, I was up for an hour. I just had to wait it out. Wait for the coughing to tire itself (and me) out, and taper off.
The funny thing is, this is unusual for me the past year and change. Since I started a new nebulized antibiotic, I’ve been pretty damn healthy. I’ve been able to sleep through most nights without a coughing interruption. I’ve been going very slowly and steadily downhill the last month or two. I go to CF clinic in a week and a half. I expect they’ll send me home on antibiotics, whether it be oral or IV (though orals are far less effective for me than they once were). Even more important to note, waking up once a night to cough for an hour is nothing for CF. It’s negligible. I’m still quite healthy for a CFer. It gets even more fun as CF progresses.
My clinic puts out a CF newsletter every once in a while and they like to include articles written by patients. I’ve just finished writing one that is due to the CF social worker no later than next week. This is the third I’ve written since I started a year and a half ago.
Relationships are always work. Add significant stress to the situation and they’re extra work. I think we can all agree that CF falls under the “significant stress” umbrella. CF tends to add complications to every stage of a relationship, just as it gets in the way of everything else. I am a straight female, so I will be writing this from that perspective. All readers are welcomed and encouraged to read while keeping their appropriate pronouns in mind.
Meeting someone new when you have CF presents a pile of questions. When do I tell him? What do I tell him? How much do I tell him? How will he react? Will he be grossed out or scared? Will he back off? Everyone has their own take on how to deal with introducing someone new to CF. I was literally a poster child for the Connecticut chapter of the CF Foundation (CFF) when I was a kid, so I’ve always been very open with it. Men I date have always been told straight off the bat that I have CF. I answer whatever questions they have as they come. That’s my method, but it’s not the method for everyone. I’m sure it’s scared some guys off before, but I can’t be bothered with those guys anyway.
Once you get into the swing of things with somebody, there are a whole bunch of new questions. How much do I include him in CF things? How much do I want him involved? How will he handle it when I go on IVs in his presence for the first time? How will he handle it when I go inpatient? Is he one of those people afraid of hospitals and he’ll all but refuse to visit? How will he handle the not-so-attractive parts of not just CF, but also of the side effects to such heavy medications? Much as in the beginning of a relationship, I tend to handle it very straightforwardly. My boyfriends have always been as involved as they want, though I do make sure to note that I’d like them included to some degree or another. The important ones have gone with me to clinic appointments, to meet my team, and to include themselves in the process. I find sometimes my doctors get a better idea of how I’m doing from the perspective of someone close to me rather than from within my own head. Often, they get the most well rounded information from a combination thereof. I have been lucky to date men who have not feared hospitals. No one particularly likes them of course, but my boyfriend Ryan has visited me in the hospital for as long as I can remember, back when we were “just” friends.
[This was a photo taken in the hospital in June 2011, before we were ever a couple. It is not included in the article, I am sharing it here because why not. Plus it's such an attractive picture of both of us.]
Clearly, he visits now as well, when he’s within reach (he’s currently attending college six hours from home). I’ve also been fortunate enough to date men that aren’t particularly turned-off by very unattractive side effects. They get dealt with appropriately as far as my wellbeing goes, and otherwise ignored.
I cannot claim to be a relationship expert. Far from, in fact. That being said, I believe there are two main components to any healthy relationship, especially a relationship with additional stresses already built-in. The two components I refer to are honesty and open communication. You don’t need to tell a brand new date every detail about CF, but I would recommend not lying either. Take the questions as they pop up, answer them in appropriate detail when they’re asked, whatever amount of detail that may be at the given time. Discuss the subjects, even the difficult ones. Perhaps even especially the difficult ones. You may be resistant to it, your other half may be resistant to it, maybe both of you will resist. When difficult things occur, they need to be discussed, as tough as that may be. As a human, as a woman, as a CF patient, as a social worker, I have always found open communication goes a long way towards getting through anything intact. And yes, I can resolutely say that’s true even when dealing with something like CF.
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
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.
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.