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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Friday, May 22, 2015

Around and Into the Unknown: A Book Review

Today, I have a little something special to share. My good friend and Feeding Tube Awareness Foundation colleague, Hillary Savoie, has recently written a short story called Around and Into the Unknown. Hillary is maman extraordinaire to Esmé, founder of The Cute Syndrome (a blog and a medical research fundraising organization), Feeding Tube Awareness Foundation staff member, and holds a PhD. She is an incredible woman and I thought it would be fun to have her share a little more about herself, her daughter, and her book.

- First, can you tell me a little bit about Esmé and The Cute Syndrome?
My daughter Esmé was born with a number of challenges--some of which, like her low tone and poor swallowing reflexes, were present at birth. Others developed as she grew, for example, she began having seizures when she was around 9 months old. Esmé is now almost 4 1/2. She has severe developmental delays, epilepsy, failure to thrive, and a movement disorder. She is tube-fed, non-verbal, and non-ambulatory. She is also adorable super goofy and very clever! 

The Cute Syndrome is something that my friend Dana came up with early on when we were told Esmé likely had a genetic syndrome of some sort. Dana said, "Yeah, Esmé has a syndrome, she has the Cute Syndrome!" And since Esmé has remained, essentially, undiagnosed all this time, the name sort of stuck as short hand for what Esmé "had." I always liked the name because syndrome names can feel so scary and clinical, I loved that we had a positive spin on categorizing Esmé's disorder in some way with one of her most defining features: her cuteness!

I started blogging about life with Esmé in 2012 when her seizures were totally out of control and I had taken a leave from my doctorate program and teaching position in order to stay home with her. At the time we were spending most of our time in bed dealing with seizure clusters, vomiting, and lethargy. Naturally, I called the blog The Cute Syndrome. A year and a half later, when I started the foundation to fund medical research for rare genetic epilepsies, like PCDH19 and SCN8A, and related disorders, the blog lent its name to the foundation.

- Tell me about your story "Around and Into the Unknown," what is it about?

Around and Into the Unknown is about the journey we've been on since we first had the indication that Esmé might have some sort of medical or genetic differences--at our 20 week ultrasound. For us the process has been extremely difficult, and even after almost five years of testing, we still don't really know what Esmé "has." Her genetics in this respect are unclear. We now know that she has two mutations in genes associated with infantile epilepsy and many of her other symptoms--PCDH19 Epilepsy and SCN8A Epilepsy--but there is some confusion about whether these genetic "should" mutations cause symptoms in her or not. So, we are working with researchers to dig deeper into her genes to see what else might be causing her symptoms.

More than that, though, I think the story is about trying to understand what it means to have a genetic mutation. We all have mutations in our genes--these lead to all kinds of human variation, like green eyes, increased susceptibility to certain diseases, behavioral differences. Culturally we tend to see genetic differences like Esmé's as something else all together--when really they represent an end of a spectrum of genetics that we are all on. Yes, in Esmé's case her genetics cause changes that are obviously severe, but the mutations are not fundamentally all that different than what is hiding in all of our DNA.

- You published this story as part of a travel series - can you tell us how that came to be?

It was actually due to an accident! My friend Channing Rodman sent me a link to a call for the travel series, 6 of 1 Travel, at my publisher Ponies + Horses Books, but she'd intended to send the link to their memoir series, 6 of 1 Memoir, call instead. When I saw the travel series link I asked her if she had a particular story in mind for me to write. Not realizing why I was confused, she said that yes, you wanted me to write a story about "how genetic testing is not the linear route to an answer we think it is." It sounded like she was talking about a journey of sorts--traveling into Esmé's genes. By the time we'd realized the confusion about the link, the theme was already set! The story just came together so nicely all through an accident!

Interestingly, I later pitched a second story to Ponies + Horses for their 6 of 1 Memoir, which they also accepted. So, my second short book with them, Whoosh, will be out later this summer. It will be available for pre-order in the next week or so. 

- Why did you want to write this story?

I really want people to understand that genetics is still an emerging science. While we know so much more than we did even a few years ago, we are still really far from finding answers for many people who are struggling with disorders associated with genes that have yet to be "discovered" in humans, or disorders that are caused by multiple genes interacting, or disorders that are altered by both genetic and environmental factors. It seems like people really struggle to understand how we can have a child who remains undiagnosed despite our best efforts...and I wanted to help explain how that can be. I also wanted to write something about the emotional impact of these kinds of quests. This is something that I think a lot of clinicians who work with kids like Esmé don't understand--it is a hard journey. Finding answers is hard. Not finding answers is hard...and it is all difficult in ways that they may not anticipate.

- How's Esme doing? 

Esmé is doing really well at the moment. She is making some amazing gains. Last year she started being able to pull herself up to stand with support. She still needs support to stand by she is exploring the edges of her balance in ways that make me think she will walk some day. We have also recently learned that she can read a number of familiar words. Since she is currently non-verbal, we are attempting to use this skill to better communicate with her, which is really very exciting!

- What are you working on now? 

At the moment I am completing edits on the next book "Whoosh" which will be coming out later this summer. Whoosh is about when Esmé experienced cardiac and respiratory arrest as an infant. It is a story I have been working on writing in some form or another in the four years since it happened. I think I've only just now been ready to write it. I am working on another similar length piece about Esmé's heart function, and I am about to dive into a piece about her communication abilities. Also, I am writing on my blog The Cute Syndrome about once a week...I see it as a place to test out ideas for longer pieces.

- What are your coping techniques for dealing with the stress of the unknowns you face with Esmé?
For me the strategy has always been about openness and honesty about my feelings through writing. It is one of the reasons I started blogging about Esmé...I wanted my friends and family to know what I was thinking about, what I was feeling. It seems like people often have the impression that people going through life with medically fragile/complex children are just somehow stronger than other people or that our children's lives are somehow pitiable--so it seemed to me to be so important to let people know all sides of the story--at least my version of it. 

I have also found tremendous help coping through service. Starting the Cute Syndrome Foundation to fund medical research for the rare disorders that we suspect may be part of Esmé's genetic picture helped me feel more in control of her fate--even if none of the research we've helped fund will benefit her directly, it pushes the science around rare epilepsies forward--and will help many children like her. Of course not everyone will have the time or inclination to take on a project like that...but other service is possible as well. I have had a stint volunteering with the Feeding Tube Awareness Foundation and been active in various groups to offer helpful advice to people in similar situations. 

Finally, I must say how much it has meant to me to find other parents, like you Brandis, online...people who I may never meet, but who are deeply involved in our lives. What is interesting is that I always thought that I would find my support network through being diagnosed. But for me that has not been the case--I have found people online whose children are very different from mine--Raya being one such child--but who share a kind of philosophy of life with a complex kid and absurd sense of humor that synchs with my own life. That is where I have found what I needed most to get through.--

And if that wasn't cool enough, here's a cool little video to help introduce Hillary and Esmé:

Aren't they awesome?! 
One of the greatest blessings that has come out of all we've been through with Raya is the association with other moms who are navigating a similar life. There is just something special about being able to have a conversation with someone else who is familiar with all of the medical lingo and understands the frustrations and joys of life with a medically complex child. Hillary's story is a raw, unapologetically real account of the process her family went through to seek out a diagnosis for her beautiful daughter, Esmé. At times as I was reading it, I couldn't help but laugh at how well Hillary described the exact thoughts I have had as we've gone through a similar process with Raya. This story is a great read for anyone who has ever been through the process of genetic testing, has not yet started the process of genetic testing but will be, and really just anybody who has a complex child in his or her life. If you want to better understand what it's like, Hillary will explain it to you! (Fair warning, if you are easily offended by the "f" word, you might have to close your eyes a few times but let's be real, sometimes the process of finding a diagnosis brings out the swear words in all of us.) I loved Around and Into the Unknown (available for purchase on Amazon) and I can't wait to see what Hillary comes out with next!

*This post contains affiliate links.

Monday, May 18, 2015


Today was the most productive day evah. For real. I should back up though. I have been sick for the last 12 days, the first 8 of which were miserable. My only symptoms were a fever that made me feel like I had been hit by a truck (but also came down with ibuprofen, often fooling me into thinking I was better) and a dry, unproductive cough. I'm pretty sure that if I had been able to just lay around and do nothing for the first couple of days, I would have gotten over it pretty quickly, but YEAH RIGHT! I have 5 kids and it's May. Ain't nobody got time fo' dat. I finally hauled my sick self to the doctor last Wednesday afternoon. I had to cancel respite for the whole week last week, which really stunk because she's out all week this week too. Her son is graduating this week and I didn't want to risk having her catch germs. She was sick quite a bit in April with something very much like what I had, so she didn't want to risk catching anything.

Anywhoo, I dragged my sick self to the doctor last Wednesday with both of the little girls in tow. That was super fun. Raya is a pretty good patient but she really stinks as a tag-along. She's so impatient and I think she actually gets jealous when the doctor isn't interested in seeing her. It's totally understandable and kind of funny. I got swabbed for the flu, which was not funny. There's nothing funny about having a stick jammed up your nose. That was negative though, which we expected because the flu doesn't last 7 days. That left 2 other options: walking pneumonia or a secondary bacterial infection that was probably a result of whatever I'd had earlier in the week (like maybe flu). My lungs sounded awesome (really, no sarcasm. clear as day) so she was kind of at a loss, and did what all doctors do when they're at a loss: prescribe 5 days of azithromycin and say, "come back if it doesn't work." I finished the 5 days last night and although the cough isn't completely gone, it's most definitely better and I haven't had a fever since Thursday so I'm calling it a win.

Wednesday night was lousy because both schools had their big end-of-the-year events at the same exact time, which meant I had to choose between the kids. Donny was still at work so we couldn't tag team. I ended up dropping the older kids off at a friend's house and they got a ride to their school while I took Raya to hers for her little music performance.

Speaking of wins, today was kind of a big fat win. After feeling like I fell short on EVERYTHING since I got sick on the 7th, it was nice to finally have a good great day. Friday was kind of a low point. I had really REALLY wanted to go to Raya's water day at school but Piper was still coughing and I didn't have a babysitter so I couldn't do that. I had also really REEEEALLY wanted to take the little girls and meet Kaida's class at the zoo on their field trip but I was too sick to go traipsing around the zoo all afternoon so I couldn't. Instead, I was running around with 2 crabby, tired girls to pick up the medical paperwork that had to be signed by 2 of her doctors before the IEP meeting today and got a phone call from one of the doctors. At our last visit with her, she had said that if I needed a letter for the school, to let her know what I needed it to say and she would write it. The day I brought in the paperwork, I emailed her and let her know what I needed her to put in the letter. It wasn't anything demanding, just a statement of what areas Raya needs support in at school. She called me on Friday to tell me that she couldn't write what I wanted her to write because it was asking too much of the school, they wouldn't give it to me anyway, and she can't ask them to provide that level of care, etc. I tried to explain that they were already considering providing her an aide and that I only asked for those things in writing that would validate the decision to provide the aide, but I was kind of caught off guard and couldn't really get the right words out. She wasn't really listening to me anyway, and I felt like crap and could only get 3-4 words out at a time before having a coughing fit. Then she asked me if I was okay and I couldn't stop the tears from coming. I don't know if she could tell or not because of my scratchy voice and coughing but I didn't really care at that point if she could tell or not. It was really disappointing. I really wanted to go into the IEP meeting feeling like she had my back on what I was asking for, and instead, she was looking at the situation backwards. At the end of the call she told me that if, after the meeting, there was anything the school needed from her, to let her know and she would write it for me. Riiiiight. Because that worked out so well for me before. I stayed as polite as I possibly could and just said that since the school was already considering providing an aide, I hoped they would just go ahead and give her one so the letter would be a moot point anyway.

Fast forward to today, we had our first official elementary school IEP meeting and I'm happy to report that no tears were shed and no voices were raised. It went beautifully, and we are feeling so much better about sending Raya to kindergarten when school starts. The school staff decided that Raya would benefit from the assistance of a health aide throughout the school day. She will have an aide to help her with using the bathroom on a consistent schedule, to help with tube feeds so that she doesn't have to always be pulled out of class, and to be with her during lunch and recess. She will also be leaving school at 1:30 every afternoon until the weather cools down. School starts at the end of July this year, when the temperatures will still be in the 110-115 range, and the combination of the heat and the shock of being there from 8-3, 5 days a week would be too much for her. There are other things that were not addressed (or at least not discussed in the meeting) that I would still like to address, but this was the biggest thing and I think/hope the rest of it will fall into place since her most significant needs will be met. I haven't gotten my written copy yet but I should have it tomorrow, and we can always amend the IEP in the fall if we need to. Overall, I am happy with how it went.

After the IEP meeting, we went home and Donny went to send in his passport application while I waited for time to pick Raya up. Once we had finished those errands, we decided to drop my car off to get new tires ($$$) and went to Costco for diapers. We got some lunch and made it home just in time to drop off Donny and Piper so Raya and I could drive an hour to pick up her beautiful new stroller that FINALLY came. Her ped wrote the script for it in December or January and we ordered it mid-January. They said it would be in after about 2 months. I'm not complaining though because I'm just really grateful to have it. It's awesome. We got back home in time to go pick up my car with its 4 brand spankin' new tires, and then made it back home in time for the supply company to come exchange Raya's malfunctioning feeding pump. Long story short, it ran all day Saturday without actually feeding her. She went to a playdate at a friend's house, and by the time she got home, she was sad and weepy, tired, hungry, and felt sick to her stomach when she started to eat. She even fell asleep at the kitchen table, which NEVER happens. Right after that, I opened up the backpack and realized that it had quite a bit more formula in it than it should have at that point and I'm out of patience for stuff like that so I called today and asked for an exchange. They brought it at 5pm on the dot, right after we got back from picking up my car with the pretty new tires.

That was about all the productivity I could stand for one day. We threw together a quick pasta dinner with jarred spaghetti sauce and frozen garlic toast and then Donny went to the evening martial arts class and I sent the kids off to bed and flopped down on the couch instead of going to the grocery store. It was a pretty great day.

Friday, May 15, 2015

Just a meme for a craptastic Friday

Today is one of those days where nothing has gone my way and it's just a giant ball of frustration. Rather than complain, which I really feel like doing, I decided I'd keep it simple and share this meme that I threw together. It's the image that pops into my head every single time I'm refilling Raya's pump bag and have to tell her, "Raya, I'm pouring! Hold still!" And if you were not a child of the 90s and don't recognize the reference, please just ignore me and go on your merry way and let me laugh at my lame joke.

Saturday, May 9, 2015

Pandora's Box

There aren't many stones unturned in the quest to find a diagnosis for Raya. Sure, we have a list of diagnoses and symptoms masquerading as diagnoses, but we have never found that one thing. The one that would tie a nice, neat bow around it all. Odd as it may seem, I have always envied the people who had a name for what ails their children. When someone asks them, "What does he/she have?" they can respond with a clear and concise answer that ends in "syndrome" or "disease". Now this is not to say that I wish a syndrome or disease on my child, but when there is a laundry list of medical problems, having a nice, neat little name for it (whatever "it" is) would beat the heck out of my usual babbling of "Well, she has a lot of digestive issues and CP and a chromosomal thing that we don't know anything about and might mean absolutely nothing..." You'd think by now I'd have a well-rehearsed answer for that question but it still comes out different every time.
It was around this time 5 years ago that we started down the road of neurological and genetic testing. Raya had her first MRI at just shy of 5 months old.
The neurologist ordered a barrage of blood tests around that same time, and aside from some elevated lactic acid and pyruvate levels, everything came back negative. No Fragile X, no chromosomal disorders (uhhhh...except when they repeated the microarray later on and found the microduplication on chromo 18...), and no mitochondrial disease markers.

Oh, but wait.

I found out 5 years later, at our genetics appointment in February, that the mitochondrial DNA labs were never done. They were ordered. I'm pretty sure they were ordered more than once. We did blood draws for so many labs that I had always just assumed the mtDNA and nucDNA labs were completed too. Turns out they were never done. We never got any denial letters from insurance for them, but insurance denial would have been the only reason for the lab work to not have been done. Trying to get insurance approval on genetic testing is like banging your head against a brick wall. We were also supposed to have done parental testing for the chromosomal duplication, but insurance would not approve it. With nearly any other area of medicine, the doctor's office staff would be the ones who seek out insurance approval but not genetics. I was told that I would have to do the legwork myself or we could pay out of pocket, and who can foot an $18,000 bill for a couple of genetic tests?! So we never had the parental testing done, which may have helped us determine whether Raya's duplication is significant to her medical conditions or not.
At our last visit with the geneticist a couple years ago, we talked about mito testing but agreed that muscle biopsy would be much too invasive and really not appropriate given how much Raya's condition had improved by that point in time, so we opted not to do it. I had decided we wouldn't really need to bother going back to genetics, but then we had more labs that were off when we saw the neurologist last fall. She discussed the results with the geneticist and I got a phone call saying that he wanted to see us at his next available appointment. In 6 months. (super urgent, right?) I got lucky and got us in at the 4 month mark.
After waiting 4 months for our appointment and trying not to stress about why the geneticist needed to see us, the appointment was kind of a let-down. He didn't really know why we were there. (gah. because you told the neurologist to send us!) After scrolling through years' worth of her lab results and breaking policy by printing me a whole stack of them instead of making me order them myself through medical records, he said he found what had prompted the neuro to send us to him again and that it was the same things that had always been a little off when we had run them. Then he brought up mitochondrial DNA and nuclear DNA testing, and that was when I found out that the tests had never actually happened. He asked if we wanted to try and have them done and I said yes, so they sent off the order. It was denied by both insurances and we were again presented with the comical option of paying the $21,000 tab ourselves. Thankfully, one of the local mito moms that I greatly admire pointed me in the direction of a different lab and said it was more likely to give us the information we are looking for than what they had ordered anyway. The lab also has a financial assistance program that I didn't think we'd qualify for but we DID, and it reduced our OOP cost to $50. The insurance approval happened really fast, the financial assistance program approval happened in about 10 minutes, and the collection kit was waiting for me in the mailbox when I dragged my sick self out there yesterday. (fever of 103-105. happy mother's day to me.) Having it happen so fast was really exciting and I was feeling so good about finally being able to have this done!

Until I opened the envelope and the reality of it hit me. Maybe it's the fever talking, but I got a little misty-eyed. It's a little genetic Pandora's Box. Schrodinger's saliva tube. What if?? What if the results come back and once again tell us nothing? I mean, yeah, it would be REALLY awesome to rule out mito, but what if we can't rule out mito? What if I just don't want to know? I do but I don't. It's a feeling akin to finding out the gender of baby #3 when we already had a boy and a girl. I thought about how fun it would be to not find out and let it be a surprise. I waffled back and forth for months until it was time for the anatomy scan. Ultimately my need to know won out, and so it is with the mito testing. I don't want to know but we need to know. Now the fun part will be collecting the much larger than expected amount of saliva required for the test from my orally-aversive 5 year old. I explained the process to her today and told her we would do it tomorrow, and that it won't hurt and she can have one of her special treats after. I'll send it off in the mail on Monday and then we will wait and wonder. Hopefully the results will be quick just like everything else has been so we won't have to wait too long.

Thursday, May 7, 2015

Ok, I can breathe again.

The big yucky meeting is over. Yesterday I met with the MET (multidisciplinary evaluation team) to go over the results of Raya's evaluations, which were to determine whether or not she will qualify for an IEP going into kindergarten. To make a long story short and avoid the annoying suspense that I've been living with for the last 2 weeks, I will just come right out and say that Raya WILL be on an IEP going into kindergarten. (cue HUGE sigh of relief)

I did not know until the end of the meeting that she was going to have an IEP. First, they had to go over all the results of the evaluations with me. Aside from the very long days in between the evaluation and the results meeting, that is the most nerve-wracking part. On one hand, you want to hear good things about how your child is doing, but on the other hand, you want them to score low enough to qualify for the services you know they need. In past meetings, I've cringed a bit when she has been within the average range on things. The results of these school evaluations have never been a very accurate picture of Raya from a social, emotional, and behavioral standpoint. This time, it was music to my ears to hear the results of her academic and cognitive evaluations. She is one smart little cookie. When the school psychologist was doing the academic & cognitive evals a couple weeks ago, she kept telling me, "She is doing great! I have 2nd graders who can't even do some of these math problems or answer some of these questions!" I am relieved to know that she does have some natural ability with the academic side because I anticipate that there may be difficulties with her attention span and with getting her to do homework. Much credit goes to her phenomenal preschool teacher and aide too though. They are wonderful and have done so much for Raya to get her where she is.

The part I did not like hearing was how vastly different the school & home evaluations were in the adaptive behavior and social areas. I totally understand that her teacher does not see most (or any) of the problem behaviors we see outside of school, but it really frustrates me that the evaluation does not take into account the fact that she is only with her teacher for 9 hours a week and she is with me for the other 159 hours of the week. That is an extremely inaccurate representation of her adaptive level of functioning. I don't know if the teacher's booklet had the exact same questions that I had, but some of the questions on the evaluation were things that would never apply to school, like "Decides what clothing to wear without help". They don't do that at school, so how would the teacher know? The majority of the questions were things that Raya reacts very differently to in a school setting vs in any other setting. She is at school during her happiest hours of the day when she feels good physically, and she LOVES school. At school, they don't have to make her do things she doesn't like to do. Picking up toys at school is fun because everybody helps. Putting away her own toys at home is hard because she has to do it by herself. At school, even the tasks that are done independently are closely supervised, and the other 20 kids in her class are doing them independently too. She holds herself together well at school and in the mornings, and then kind of falls apart in the afternoon & evening, so it was frustrating to know that those things were not taken into account. I thought maybe they'd just average the teacher's scores with mine or something but they did not. There was an average of about a 30 point difference between the teacher's scores and mine and it does not appear that mine counted for anything at all. Annoying, but I expected it based on conversations with the teacher.

However, thankfully, the team determined that she does qualify for an IEP under the "Other Health Impairment" category (OHI). Had she not qualified for OHI, we would have done a 504 plan instead. I had convinced myself that I could be okay with that as long as the needs I feel she has would be met, but I am so incredibly relieved that they decided on OHI. I can't really put into words why I felt so strongly about an IEP vs a 504, but I did/do and I'm really, really glad we're going this route. She won't be due for a re-evaluation until the end of 2nd grade so this will get her off to a strong start in elementary school.

Now comes the fun part. Gotta write the IEP and get everybody to agree on things. I have to say that after yesterday's meeting (where there were a couple of different people in attendance than the last one) I am feeling MUCH better about the direction we're going in and I really believe that everybody will be able to come to agreement about what's best for Raya and also do-able for the school. And I'd be lying if I said I wasn't super grateful that 2 of my other kids will still be there because if there's an emergency, they can be there for her, if in no other capacity than to hold her hand while she waits for me.

The school year is rapidly coming to an end and it's bittersweet for me. My oldest is finishing up her last couple weeks of elementary school and will officially be a middle schooler, and Raya is graduating from preschool and moving on to elementary school. Both make me want to smile and cry at the same time, for different reasons. I remember in the early days of Raya's tube feeding adventures that I thought she'd only need the tube for a couple weeks. Then a couple months. Then a couple years, and when she was 2 or 3, I told myself that she'd probably be off the tube by the time she went to kindergarten. Oh, how I would love to be able to say that but there are some things in life that are just beyond our control. Instead, she is going to start spreading awareness and educating the new people in her life about life with a feeding tube and showing them that nothing holds her back from doing what she wants to do. ♥

Saturday, May 2, 2015


April felt a bit like a bulldozer to me. I'm actually kind of proud of myself for making it through April without screwing up anything important because there has just been SO much going on. Not that May is going to be any calmer, but aside from feeling bulldozed, I'm feeling pretty good about April. And I'm not sad that April is over either.

I didn't post much of anything in April because I was either too busy to sit down and do it, or I didn't have the emotional/mental energy to do it. I have vaguely mentioned a few things (school meetings, being reminded through friends' experiences that life in the medical world is fragile, the boy back on asthma meds, field trips, etc.) but I thought now would be a good time to expand. Not because anyone will be particularly interested but because I need to write crap down or I forget it.

This month has been a plague of seasonal allergies that, for some, turned into upper respiratory infections and asthma. I had to pick Cole up from school 3 times in April because of breathing issues, two of which also came with stomach symptoms. One of the days that I picked him up, there were 6 kids from his class that all went home that day with the same symptoms, so obviously there was something going around in their classroom. It grosses me out to think about it. Wash your friggin' hands, kids!! We were able to get a quick appointment with the allergist (meaning, we got an appointment in 1 week rather than in 1 month like usual) and found out that it was indeed asthma, and that it was worse than it has been since he was first diagnosed around the age of 3-4. The good news was that we got him on a daily inhaled steroid that has already made a difference, and we were able to get him a rescue inhaler to take on his field trip the next week. Of course then the day after the field trip, he used his inhaler at school and it made him feel dizzy and sick to his stomach, so I had to go pick him up again and bring him home early.

I had a meeting that kind of blindsided me in regards to getting Raya the support that I feel she needs in kindergarten. I've always felt like IEP meetings have gone well for us and have been grateful that we have not had the negative, hurtful experiences that many of our friends seem to have at most of their IEP meetings up to this point. It seems that we are now entering the phase where we will be fighting for everything; even the things that seem to be common sense stuff. I am so thankful for the resources that are available to help parents like me navigate the world of special education, and that there is so much helpful information available online.

I can only speak for myself, but when I became a parent, I never anticipated that I would need to one day become an expert on education law and the rights of children with medical and special needs. I know I'm not alone in that. The legal world is not where my interests lie, and reading & talking about it makes my head hurt but that's what I've been trying to do these past couple of weeks as I prepare for the next meeting. I do not feel qualified to be Raya's advocate considering that the other people involved all have degrees in education and do this sort of thing all the time. This meeting will be our most significant meeting yet, and I feel physically ill when I think about it. I have caught myself many times letting my imagination run away with me and working myself into a panic over something that has not even happened yet. I keep having to stop myself, take deep breaths, and remind myself to continue having faith that Raya will be watched over by a loving Father in Heaven who has always watched over her in situations like this.

I have tried really hard to keep my mind off of what could happen at the next meeting, and subsequently what the results could be for Raya in kindergarten. My stress has been compounded by the behavioral changes I've seen in Raya for about the last 2 weeks, that her teacher of course never sees at school. I love her teacher dearly and I'm so grateful for her and for everything she has done for Raya, but it frustrates me to no end that the problem behaviors seem to happen everywhere but school. The scary part of that is that her teacher and I each had to fill out similar questionnaires as part of Raya's re-evaluation to determine if she will be eligible for an IEP in kindergarten under the categories she qualified in previously. Many of the problem behaviors that I'm sure my questionnaires identified will likely not be reflected in the evaluations the teacher filled out because Raya does not do some of those things at school. She is really good at holding herself together at school but there are many days that she holds herself together until she walks out the door of the classroom and then she just runs out of energy for staying composed and she falls apart on me. I hope the scoring system they use will take into consideration that she is only with the teacher for 9 hours a week but she's with me for the other 159 hours. Her teacher never has to make her do things she doesn't want to do, like get dressed, get connected to her feeding pump, get ready to leave the house on time, eat, help with household chores, stop mauling her baby sister, etc. I'm not saying any of this as a negative towards her teacher, it just frustrates me that Raya acts differently outside of school so the school personnel don't see & understand the whole picture when it comes to her challenges and needs. I don't think that what they currently see in her 3 x 3 hour school days is an accurate predictor of how she will handle kindergarten. Maybe that's pessimistic of me but I think it's more realistic than pessimistic. She may pleasantly surprise me and I'm not saying any of this as an insult to her, I just like to think that I know her well enough to have a pretty good idea of how she will deal with different situations and environments.

This school stuff has occupied my mind most of the day and night for the past 3 weeks. It's all I can think about when I lay down to go to sleep at night unless I just let myself fall asleep on the couch in front of the TV. I know that's not a healthy habit but neither is getting in bed and laying awake for hours stressing about kindergarten. I get a little more sleep when I fall asleep on the couch. I am in a vicious cycle of mommy/wife guilt because I feel like no matter what I try to accomplish, I never finish anything that I start. I am too easily distracted to ever finish things. If I don't get interrupted by someone or something else, I end up interrupting myself because I'm so used to getting interrupted. I miss the way my brain used to function when I was getting adequate sleep every night and did not feel like I was being pulled in 50 different directions. That's not to say that I am not happy with my life because I definitely am, I just can't even remember what it felt like to have my brain firing on all cylinders and I miss that feeling of being in control and on top of things.

I have let a lot of things go this month. (like my kitchen...) One of the most liberating lessons I've ever learned was that I don't have to feel obligated to do everything. There are a lot of things I like to do, but when you get to the point that even doing things you like to do stresses you out, it's totally okay to let those things go too. I am not the world's most social person, but I do like to get out of my house every now and then and socialize with friends. I used to do a lot of scrapbooking and sewing projects, but at this point in my life, thinking about doing those things just makes me tired so I have given myself permission to just not do them right now. Earlier this month, I was having one of the BUSIEST days I've had in a long time. We went to therapy as usual, but during Raya's therapy appointments, I had to go sit in the car and get on a conference call with a feeding supply company, fill out school questionnaires, and pump a bottle so that I'd have something to feed Piper while Raya was having school testing done after her 2 hours of therapy. While I was in the middle of all of that, I got a text from a friend saying that they needed a sub for their Bunco group that night and asking if I wanted to join them. I laughed out loud. I appreciated the invitation so much, but the thought of having to go somewhere that evening and interact with people was just more than I could handle so I politely declined.
Friday morning I was supposed to meet some of my special needs mama friends for brunch at 9:45. I came home from dropping Raya off at school and put Piper in bed for a quick nap and pumped a bottle for her. She did not go to sleep so I figured we'd go ahead and go to brunch. Then I got a phone call from the school district's occupational therapist who had done an evaluation on Raya last week. She said she was not going to make it to the upcoming meeting and wanted to go over results with me. Based on the evaluation she did, Raya does not qualify for OT at school, which I knew would be the outcome because it's mostly based on fine motor and she doesn't have fine motor delays anymore. Then she told me that the teacher's sensory evaluation and my sensory evaluation were very different but that she understood that kids act different at home than they do at school, and that she could not give me the scores of those evaluations before the meeting. After I got off the phone with her, I didn't feel like going anywhere. I really didn't care about the results of her evaluation because I knew that's what the outcome would be, but having her tell me that there was a big difference in what I reported and what the teacher reported pretty much confirmed one of the big fears I have going into the next meeting. I had just about talked myself into going anyway because I knew my special mamas would understand and be supportive, but while I had been on the phone with her, Piper had fallen asleep. I didn't want to wake the beast so I didn't go. Another night, there was a church activity and Donny was gone that evening, so I was going to go and leave Ashtyn in charge. Then something happened (kids not behaving or something like that) and I decided I couldn't leave so I missed it.

I don't feel bad about letting those things go though. I feel bad about how messy the cluttered parts of my house look right now, and about how much time the kids have spent watching tv while I've scrambled to meet deadlines on other things. I feel bad about how many times they've had chicken nuggets or burritos for dinner in the last month. I feel bad that I haven't kept up with laundry or cleaning or vacuuming (except when I vacuumed the kids' rooms last week and the vacuum sucked up a loose strand of carpet in the doorway and put a 5 inch run in the carpet, which I also feel bad about) and I feel bad that I have probably come off as anti-social because I just don't have it in me to do anything but be at home.

Monday, April 20, 2015

Juggling cats

I feel like I'm juggling cats right now. Well, I suppose I can't really say that because I've never actually juggled cats so I don't know for SURE that this is what it feels like, but ugh, it's got to be close to it. So much to do, and so little time to do it all! I've hit my end-of-the-school-year wall about 3 weeks early this year and we are officially to the drag our butts across the finish line phase. Throw in the most awful allergy season in the entire 13.5 years I've lived in this state and a few germs and we're just a hot mess around here. I have a bunch of projects with deadlines all of a sudden and our poor respite provider keeps getting sick and having to cancel, which makes it hard for me to do anything during the day when Raya is home. The school health aide at my big kids' school has had me on speed dial lately for one reason or another. After picking one kid up early from school and then a trip to the allergy & asthma doctor today, it turns out that my dear boy, who had been officially discharged as an asthma patient last June, has not outgrown his asthma after all. He scored a whopping 57% on his lung function test and we left with 3 new prescriptions and a signed asthma action plan to have on file at school, just in time for his field trip on Wednesday to an outdoor location 2 hours away. (really, I am grateful that we got it in time for the field trip, just bummed that it's gotten this bad) On the bright side, it sounds like he will qualify for an asthma study and that would cover his medications, so yay for that.

I know this sounds like complaining but really it's just my way of saying, Wow, there is a lot going on right now. Being a mom is my "job" and it's the only job I ever really wanted. I am really grateful that I am able to do all of this and be there for my kids.

Thursday, April 16, 2015

It shouldn't be this hard.

I had a meeting yesterday. It was not an IEP meeting, but rather a meeting to discuss the re-evaluation we will be doing to determine whether or not she will continue to qualify for an IEP going into kindergarten. What I did not know was that we would also be discussing concerns and needs for kindergarten, nor did I expect to hear the phrase "We don't have the staff for that" as many times as I did. I expected to have mountains to climb but was not expecting to be confronted with them yesterday and was not really prepared for those discussions. Now that I know the areas that I will meet resistance on, I can at least start preparing my case and finding out what rights & protections we have for those things. I'm telling myself that's a good thing. I am also hoping and praying that it will not be as difficult as I am now afraid it's going to be to get what she needs (and we are not asking for anything unreasonable), and my prayers will be more specific now that I know what we're up against.

I know I'm being vague but it would not be in anyone's best interest to discuss details, especially when we are in the very beginning of the process. Here's what I will say though. It should not be this difficult or stressful to send a 5 year old child to kindergarten and know that they will be safe and adequately and appropriately cared for at school. I should not have a gnawing pain in the pit of my stomach when I so much as think about the concerns we have for keeping Raya healthy and safe in school, and I should not have to feel like the burden of proving not only what her needs are but how significantly they may impact her education is upon me. I could go on, but for now I'm going to stop and work on getting my ducks in a row before the reevaluation testing next week.

Friday, April 10, 2015

Living in the Woods

Parenting is hard. There is so much to worry about. Throw in complex medical conditions, and what is considered "hard" about parenting changes. The things that are at the forefront of the mind are very different for parents of medically complex children. The stresses of parenting a child without medical conditions certainly exist, and they are real and valid. For parents dealing with medically complex children, those typical worries still exist but they have to take a back burner to more basic, primal needs that keep the child alive.

The term "medically complex" is a vague, umbrella term used to describe a wide range of medical conditions that present unique challenges and require special care on an ongoing basis. There are no official parameters regarding what conditions are considered to fall under the umbrella of medically complex, but chances are that if a child requires ongoing care with a herd of doctors and therapists, he or she is medically complex. Many medically complex children have diagnoses of genetic conditions, diseases of major organs, and neurological disorders, and many have a collection of symptoms with no diagnosis.

Parenting a medically complex child means not only providing the usual care and nurturing, but also becoming an expert on whatever medical conditions affect the child. It means learning how to operate medical equipment, perform medical procedures, use the various tubes and devices attached to the child, and acquire an entire vocabulary of medical terminology. It also means preparing for any of the potential emergency situations that could arise and knowing that danger of these emergencies happening always lurks in life's shadows.

Parenting a child with any type of special needs changes the way the mind works. The blinders come off and nothing can ever be looked at the same way. Acknowledging the darker side of life does not make parents of medically complex kids pessimists, it just means they are doing their best to cope with the often ugly and terrifying realities that accompany their children's medical conditions. From an outsider's perspective, it can be difficult to understand that no matter how good a medically complex child looks, he or she may not ever really be "out of the woods," so to speak. Medications can keep symptoms at bay and special diets can help control the damaging effects of disease. Feeding tubes can ensure adequate nutrition and aid in overall health. Insulin pumps can keep blood sugars stable. Congenital conditions can be repaired surgically. All of the medical interventions that parents of medically complex children learn to administer can keep their children in a state of optimal health for their conditions, but all of that can change at any moment and wreak havoc on the most stable-looking medically complex child. In the blink of an eye, things can go from calm to complete disaster.

This is why we are stressed out and we can't ever completely relax. This is why we may find it hard to listen to people talk about the more typical concerns of parenting, and why we sometimes seem flaky or uninterested. This is why, no matter how good things are going, we have a hard time not living like we're waiting for the other shoe to drop. Even when everything appears to be safe, we never feel like we are out of the proverbial woods because mentally, we can't ever really leave the woods. It's all we've known since our medically complex children entered our lives and we can't erase the memories we've made there. We see terrifying and devastating things happen to the friends we've met while living in the woods, and we understand that those things could happen to us too. Next time, it could be us. If we seem a little overbearing, overprotective, or paranoid, know that it is for a good reason. Just as any parent dedicates his or her life to caring for his or her children, we have dedicated our lives to caring for our children but what that requires of us is very different. Living in the woods is not what we planned for our children and certainly not what we wanted for them. Since it is beyond our power to change that, all we can do is do our best to enjoy the scenery, keep living, and create a safe and happy life for them, even if it is "in the woods."

This post was featured on The Mighty

Thursday, April 2, 2015

Autism Awareness Day: Some thoughts on acceptance

I need to preface this by saying that Raya does not have autism, and that my purpose is not to somehow cheapen or lessen the struggles that families of children with autism go through. Even though autism is not on Raya's diagnosis list, she does struggle with many of the issues that children with autism struggle with. Since today is about awareness and acceptance, I wanted to share some thoughts and feelings that I have had recently about acceptance of children with special needs of any kind.

A few weeks ago, one of the kids had a friend over to play after school. Something small but significant happened that day. It hurt my heart and I have been trying since then to sort out my feelings and put them into words, but I haven't been able to. Last week, another small but significant thing happened that put my world back into balance, and I think that today is the perfect day to talk about both experiences.

Our kids are blessed with great friends who live within walking distance of our house, so during the months of the year when the weather is pleasant, there is a constant flow of children in and out of our front door. This is a common occurrence at our house, and I love it. On this particular day, the kids had gotten out of school early and the weather was gorgeous, so it was a perfect day for playing with friends. The little girl that came over is as sweet and adorable as can be. She is always polite and well-mannered at our house and I enjoy having her here. While the kids were playing, I was in my office editing pictures from a photo session I had done that week. Since the office is next to the front door, I could hear everything the kids were saying as they went in and out. As I sat adjusting the photos I had taken, I overheard this small exchange between my daughter and her friend:

daughter: Should we go in the back yard?
friend: No, let's go in the front yard. But not with Raya. I don't like Raya. Do you like her?
daughter: {pause} No. 
friend: She's so loud and she never leaves us alone.
daughter: Yeah.

Cue the breaking of my heart. Let me be clear that I am not sharing this to in any way shame my daughter or her friend. While I don't like that they had this conversation, I do remember what it was like to be their age and I understand that they are just acting their age. They had this conversation out of earshot of Raya, and they didn't actually say or do anything mean directly to her. 

I sat there dumbfounded for a minute or two, not really sure what to do. It happened quickly, and they were off to find their next adventure before I had a chance to do anything anyway. Hearing the little girl say that she didn't like Raya was the first moment that I realized people might actually feel that way about her. I think every mother has those moments where she is made painfully aware of the fact that not everyone sees her child with the same unconditionally loving eyes that she does. Goodness knows I was aware of that well before Raya was even born. In that moment, my blinders came off and I realized that this is just the beginning. This was just one friend of one sibling. What about when kindergarten starts in the fall? (well, technically the middle of the blazing hot summer on July 27th) What are the other kids going to think when she has to leave class 3 or 4 times a day to go to the nurse's office? What if somebody notices her pull-ups? What if, heaven forbid, she has a poop accident in her pull-up and the other kids smell it and make fun of her? What if she feels left out when the other kids eat each other's birthday treats and she can't? What if her dysmotility flares up and she throws up in her classroom in front of everybody?

All of those are valid concerns, but as I've pondered it, I realized that what concerned me most was not what the other kids think of her or even what they say to her. She has a pretty good track record of not caring what other kids think or say. {Remember the time someone at preschool mentioned being able to see her pull-up and she told him, "Well, if you don't like it then don't look at it!"} The reality is that yes, somebody is bound to say something that will hurt her feelings. That's normal. It stinks, but it's part of life. What I realized was bothering me more than what other kids might think was this:  
What if she starts to notice the ways she is different from her friends and it makes her feel bad about herself?

That's an inevitable part of life, right? I get that, but I was hoping we would have more time. And maybe we do. Maybe kindergarten won't be the year that somebody makes fun of her for still wearing pull-ups, but maybe it will. And maybe it won't bother her, but maybe it will. Maybe her classmates won't make fun of her if she has a #2 accident in her pull-up and they can smell it (and believe me, they will smell it), but maybe they will. Maybe her classmates won't notice that she has to have an aide sit with her during lunch to make sure she eats & drinks without choking on her food, but maybe it will. Maybe her classmates won't mind that she sometimes forgets about personal space, but maybe they will. Maybe they won't Maybe they won't care that her tube sometimes leaks smelly stomach fluid on her clothes, but maybe they will. Maybe kindergarten will be the year when she gains better control over her bowels and bladder and starts making it to the bathroom on time, but maybe it won't. Maybe it won't be the year that her teacher finds it easier to ignore her than work through her difficulties to reach her. Maybe this won't be the year that the parents of her classmates get upset that they can't bring treats with peanuts or tree nuts to class because of her. Or request to have their child moved to a different classroom where there is no nut allergy. Maybe the other parents won't complain in front of their kids about having to accommodate another child's inconvenient food allergies, but maybe they will, and maybe the kids will tell her what their parents said about her. Maybe none of those things will happen this year, and if they do, maybe they won't affect her. But maybe it will, and I don't know if I'm ready for that.

Last week, we had another experience with another neighborhood friend that helped turn things around for me and restore my hope that school will be a socially positive experience for Raya. This time it was my son's friend that comes over after school fairly often. This particular friend is probably the one that Raya gets the most excited about. Whenever he comes over, she can't contain herself. She hugs him, talks to him, and follows him around. She adores him, and as he has spent time at our house, I have come to adore him too. He is so kind to her and so patient with her. If she bothers him, he doesn't let on. He and Cole never complain about her tagging along with them when they play in the landscaped area in front of our house. He doesn't act like he's annoyed by his friend's pesky little sister, but rather seems to enjoy having her around. When he knocked on the door, Cole was in the middle of folding a load of laundry. I told him he could go play but that he had to finish folding and putting away the load of laundry first. I invited his friend to come in and wait for him to finish. Cole didn't want his friend to be bored so he let him sit on the couch and play on his Kindle Fire until he was done with the laundry.

It was no surprise to me that when she heard someone say his name, she came running to see where he was. She climbed up on the couch next to him and watched over his shoulder as he played games on the Kindle. I cringed a little when she completely invaded his personal space by snuggling up next to him and putting her head on his shoulder so that the side of her head was touching the side of his head. Bless his heart, he didn't say a word. He didn't move away from her. He just sat there and let her snuggle up to him, almost like he didn't even notice. Since it didn't seem to be bothering him, I didn't say anything. About 5 minutes later, I was in the next room and overheard him politely say, "Raya, can you move a little bit please? Your head is sweaty and it's making mine sweaty." She giggled and moved, and that was the end of it.

I just wanted to hug the kid. While I love Raya dearly the way she is, I also acknowledge that she can be really intense and kind of a lot to handle, and I don't think this little boy will ever know how much it means to me to see him being so nice to her all the time. That got me thinking about all of the other friends in our lives who have been so loving and accepting of Raya and her differences. The older kids who think her backpack is cute, and the kids in her class at school who are jealous that she can "eat through a straw in her stomach" instead of having to eat food. The kids who aren't grossed out when the tube accidentally gets pulled out at the park and watch in fascination as we put it back in. They don't try to ditch her when they're playing because they think she's too loud or weird or annoying. They play with her because they like to play with her, not because they pity her. They are the ones that look at her and just see their friend Raya. They accept her as she is and build their friendships around the ways that their unique personalities intertwine. I hope that kindergarten will be a year filled with those kinds of experiences.

As one of the most influential adults in her life, I have come to understand that my responsibility to her is to use the tools I've been given to help her overcome the challenges she has to the best of her ability and then to accept her for who she is, not try to change her into who I want her to be, no matter how good the intentions. I hope that all of the influential adults in her life will come to understand this. As she moves forward into kindergarten, my deepest hope and prayer for her aside from her safety while she is at school is for her to be accepted by her peers and by the adults in her life, and loved for who she is.

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