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Radio silence and playing secretary

I've been pretty quiet lately. It hasn't been completely intentional. It's been a pretty wild & busy summer by our family's standards. There have been some really awesome things that have happened, like when I was invited to fly across the country to speak at a sales meeting for a large company that manufactures many of the products that we tubie families depend on to keep our kiddos alive & thriving. That was a great experience for me. Like, really great. As it turns out, I love public speaking! I always have, but give me a topic that I'm passionate about and I really REALLY love it! That is something I really hope to have more opportunities to do in the future.

We also got to have my mom come and visit while I went on my little mom-cation for my speaking engagement. She held down the fort while Donny was working and she even got to experience the joy of re-inserting an accidentally dislodged G tube while I talked her through it over the phone. I was so proud! It was a rather humorous situation, actually. She called as I was opening the door to get in my friend's car at the airport and come home. We had JUST gotten started with the tube replacment instructions when her phone battery (which needs replaced) started to die, so she had to get Raya to move next to an outlet so she could plug her phone in so we wouldn't get cut off. Then she had to put it on speaker phone, and we kept having to tell the kids to be quiet. Especially Raya. "Raya, sweetheart, you need to stop talking and let Mommy be the one to tell GramE what to do, okay?" She is such a funny kid when it comes to her medical stuff.

We've kept busy with swimming lessons, summer movies, pool days, lunch & library time, piano lessons, staying out of the blistering heat, and (of course) a plethora of doctor and therapy appointments. We are having a good summer and it's wearing me out. All that busyness, combined with the fact that I hadn't completely gotten over my cough that I got in May before I came down with an awful sinus thing this past week, and that 3 of the 7 of us have not slept well this week (well, really there are 2 of us that haven't slept well in about 5 1/2 years...) and yeah, just not enough steam left at the end of the day to write about it all.

Oh but then there's this funk I've been in, thanks to my unofficial full time job. The phone calls. I have spent SO MUCH TIME on the phone trying to keep everything under control for Raya. At the end of May, it was the IEP stuff. We had multiple meetings, it was super stressful, I had to run around collecting doctor signatures, etc., but we got it done. I thought I'd have a month or so to just breathe and not stress about any of that stuff until I got a phone call last week having to do with eligibility for services that left me in tears for a few days. The first day, it was a full on ugly cry, first to my sweet friend over the phone and then to my poor husband. I don't want to share details but this is what I will say. When you live every day of your child's life with the purpose of keeping them as healthy as you can in spite of their medical conditions, helping them overcome the physical and psychological effects of those conditions, and trying to undo the damage that living in survival mode has done over the years; and when you've seen just how much they BENEFIT from the therapies and services they receive and you KNOW they would not be where they are without them, the threat of having those things taken away is gut wrenching. Terrifying. Beyond stressful. It feels like someone shot out the light bulb at the end of the tunnel that you had just started to be able to see, but nobody from the light bulb company will tell you why, or how to get a new one. They tell you that you might be able to if you provide them with the right proof that you need one, but then you're left to yourself to figure all the rest of it out. It is burdensome and unfair to the child who has worked his or her butt off, literally every week for the first years of life, and made amazing progress to then suddenly have the rug yanked out from under their feet because they're doing just well enough to not qualify but not quite well enough to continue progressing and thriving without services.

Because that news and the onslaught of responsibility it added to my plate wasn't stressful enough, I got a phone call this week from the home health company we have used for 5 1/2 years, since the day Raya was discharged with her very first NG tube at 2 months old, notifying me that due to disagreements between her secondary insurance company and the home health company, we are no longer able to use that company. Nothing has changed contractually. We have had the exact same combination of insurance companies and home health company for 4 1/2 years now, and it makes absolutely no sense that they (both the insurance company and the home health company) are making us switch, and it is really disappointing. I don't like changes when it comes to Raya's medical care. I've had many moments of frustration over the last 5 1/2 years with the company we were using, but overall they treated us very well and we always got what we needed. There were many times when I called and asked them to try and get us new things to try out, and they almost always came through. Even though they made silly mistakes like sending us diabetic socks instead of drainage bags, they got us what we needed and that is what kept me with that company for so long and through the frustrating moments with them.

Now, we are being forced to switch to the only company contracted with her secondary insurance. Based on previous interaction with the staff of their enteral division, I am not happy about this at all. The new company makes no effort to hide the fact that money is their priority, not the needs of the patients they serve. It is really disappointing to feel like you really are just a number and a paycheck. In my first 2 interactions with their staff this week, I repeatedly heard, "Well, I know the other company got you that product but we won't order it because it's more expensive than xyz alternative product and the amount we get reimbursed by insurance is low so it's not cost effective for us." I understand that concept, but good grief, you think that's going to make a new client feel good about getting supplies from you?? We were able to overcome our first hurdle with them concerning the type of pump we are getting, and for that we are grateful, but I'm still not over the disappointment of feeling like we were let down by the other company and the insurance company and being forced into a change that I didn't want to make. I'm sure it will be fine once we adjust to the change.

That's a little sampling of the things that have stressed me out this month. Somehow, words don't do justice to how dealing with that side of things makes me feel or the toll it takes on me mentally and emotionally. As I was taking a short break between phone calls to get food for one kid, wipe another kid's bum, and talk to all of them so they'd feel like I'm not neglecting them, I had a bit of an epiphany. Is there a word like epiphany that has a more negative connotation? If so, then that's the word I'm looking for. Every time I take Raya to a doctor's appointment, no matter which doctor it is, they always want to know if she's making progress with eating by mouth and with using the toilet. The older she gets, the worse those conversations make me feel as a mother. Often, I walk away from them going, "What is wrong with me that my 5 year old eats about 50 calories a day out of the 1350 she needs in order to grow, and she's still in pull-ups 95% of the time?! And my house is a mess and I haven't done half the things I've wanted to do with my kids this summer and I haven't taken the last 3 classes I need so I can apply to nursing school, and the kids have eaten burritos for dinner 3 times already this week, and all the other things I feel like I'm failing at."  I realized as I hung up the phone from the 4th or 5th phone call that afternoon that maybe if I wasn't doing the full-time job of coordinating care, advocating for what she needs, scheduling appointments, going to appointments, calling insurance companies, calling home health companies, waiting for deliveries, and so on, I would be able to be more consistent with actually caring for her needs. I imagine there is a fine line between that statement and making excuses for myself, but the last 2 weeks have pushed me to my breaking point and made me question how I am EVER going to get her toilet trained and off of her feeding tube. And I won't even talk about how crappy I feel at the lack of attention I am able to give to my other kids' needs because that's a can of worms that I don't have the energy to deal with.

THIS is the part of special needs parenting that I had no idea was coming. I knew seeing her sick/hospitalized/hurting would be hard. I knew the unknowns of her medical conditions would be hard. I knew that caring for her needs would be taxing. I had no idea that coordinating her care, being her unofficial case manager, and fighting through red tape year after year would be so. damn. hard. It shouldn't be this way. On one of my really tough days last week, I told Donny that all I want to do is take care of my kid. I am so tired of fighting for every single thing. I just want to be the mom for a while and not have to even think about all of the paperwork.

All that said, I would do it all again (and believe me, I will continue to) and I would do it for every single one of my kids. (I hope they never feel like I'm not as devoted to them as I am to Raya because I really would do anything for any of them.) It's just exhausting and I am worn out. I actually could have fought being forced to switch home health companies, and originally that was my plan. After thinking about it for a day though, I just couldn't do it. I gave myself permission to give up that fight, and I'm actually pretty proud of myself for that. I waved my white flag and we are making the switch, and so far I've managed to keep a pretty positive outlook on the situation. I can only pray and hope that the rest of the fires I've been trying to put out lately will turn out as favorably.

So all of that pretty much sums up why I haven't been writing. I've been going through some stuff, and sometimes it's just easier to stay quiet and process things privately than to try and sort it all out or try to make like everything is fine. Things WILL be fine (I hope), but the last 2 weeks, it has not been fine. It has been hard. I keep telling myself that when I am getting more sleep on a regular basis, it will change my life. I've also brought back my 2010 mantra of "It won't always be this way" because yeah, sometimes I just have to remind myself of that. It won't always be this way. It will be better, it will be worse, and it will be everything in between but it won't always be the way it is right now. Overall, right now is good, and I'm happy with our "right now."


  1. I have never met you in person, only have read your blog for a while, and I wanted to say you are not alone in those feelings! I frequently tell my hubby "this is the part of special need parenting no one sees." Others kinda get going to doctors appointments and therapies, that you can see the time block on a calendar, but the fighting for stuff and the run around that everything always seams to be is the part that is hard to explain and hard to quantify! I always said I was not going to be a "cruse director" mom, but in the end I think thats what special needs parents have to be in order to get their kids what they need because we fight for our kids because we love them too much not to.

  2. Yes. Many days I feel like I can manage getting to therapy 5x per week, 4 tube feeds, at least one attempt at eating by mouth and challenging my little guy to play while sitting up....but the paperwork and phone calls? Ugh. It is so overwhelming and draining. I have a massive pile of stuff that needs to be filed and my "Shred" pile has been growing for over a year now because I just can't scrounge up the mental energy to deal with it. Maybe I need to find a bonfire :)

  3. Big. Giant. Hugs. I've also not gotten up the gusto to update my blog, it takes a lot of emotional energy (not to mention time, which I don't have) to type it all out. But sometimes it's cathartic, sometimes it helps piece things together, sometimes it's just a nice record of things that have happened. Hopefully you feel that way too, after taking the time to get all this out. Anywho, I could say a bunch of platitudes about the crap going on, but I won't bother. I'll just remind you that you are Wonder Woman, and that all of your kids know it. So yeah, big hugs.


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