quick update

Today there are definite signs that Wyatt has some other underlying illness that may be to blame for most if not all of this whole mess. He's been lethargic all day and hasn't been wanting to eat or drink anything. For a while he was even unable to sit up and support himself. The major red flag came when he didn't even move to get blood drawn. They drew just enough blood to recheck all his levels in comparison to yesterday's readings during the long seizure. When attempting to put an IV line in to give the Keppra, he reminded everyone of his breath holding episodes - twice - so those are officially on the EEG now to see if it correlates with the intermittent silent seizures. As the day progressed things went from bad to worse. His heart rate started dipping up and down periodically from the 130s to the 80s and with the cardiac risk factors in mind, that's something to take note of. What that also tells us though is that heart rate dips are one of the Wyatt's few reliable signs that he's sick with something more than just a cold. It could be the flu; it could be a pseudomonas flare up. The flu seems more likely since he has also been running a temperature of 99.3F. In Wyatt's world anything over 98F is cause for concern but 99F are major red flags waving. So priority number one to get his temperature back down with a Tylenol/ibuprofen regiment. To avoid another IV attempt or NG tube, we are also working on syringe feeding him 50-100ml of Pediasure every couple hours. His blood sugar was down to 69 early but we convinced the staff to let us try syringe feeding first before going the more invasive and breath holding risky route. That's my mommy trick to normally get him to take medication and I was able to also give him his first dose of Keppra mixed with the Pediasure. Fingers crossed this method keeps working through the night to keep him hydrated and get some calories into him. The second priority of course it to observe if or how the Keppra is able to manage the intermittent seizure activity. At this point there is no way of knowing when he'll come back around but knowing Wyatt's history, there tend to be 2-3 downhill days before he snaps back out of it.

doubts and suspicions

 

I want to write this while it’s still raw so forgive me if it comes out a bit scattered or even more opinionated than usual.

I woke up this morning convinced we were still looking at the same scenario as we have been for the last 2 years: Wyatt causes his breath holding episodes when he’s uncomfortable or frustrated and if he does it long enough, seizures can follow. Well, based on what we found out today that may only be partially true. All 5 previous EEGs done in the first 1 ½ years of his life showed no seizure activity before, during or after breath holding episodes. So in theory during that time frame our understanding of the cause of his episodes seems correct. However, after yesterday’s long seizure activity (possibly related to his bad cold), the current ongoing EEG showed 15 silent seizures, meaning only visible on the EEG without physical signs, lasting 15-30 seconds each. That then begs the question, what the hell happened between all his previous tests and now? As usual, we don’t have an answer for that and can only speculate. The priority right now is to start Wyatt on Keppra, an anti-seizure medication, and continue to monitor him on the EEG to see if the Keppra is alleviating the silent seizures. If so, it is recommended for him to be discharged with a daily maintenance dose, to closely monitor for side effects of the medication and developmental implications, and then to repeat the EEG in a few months. As if that isn’t complicated enough since such observations are highly subjective and mainly would fall on us at home, it doesn’t help that he has a cold which makes it harder to distinguish between the normal red flags verses weird cold symptoms for a ventilator dependent child. The Ativan given yesterday morning to stop the long seizure in the ER should have worn off by now and he hasn’t been given any other medication since then. However, he is very lethargic, more so than he would normally be if we were at home and he was fighting a cold. Yesterday’s blood work, as well as today’s didn’t show anything out of range to blame it on. Since he doesn’t run a fever, another lovely side effect of having an autonomic nervous system disorder, we can’t use that as a guide either. So in my head, it’s either related to the exhausting day yesterday and the intermittent seizure activity or, fingers crossed I’m wrong, pseudomonas has flared up again. Either way, he’s definitely not like himself, not even in a having a cold and feeling miserable kind of way. But let’s get back to the more puzzling concern. How come all 5 previous EEGs didn’t indicate anything and now we’re having a concert of events going on? The thoughts started to creep back into our heads of what went wrong in June after Wyatt’s surgery. I didn’t write about this then because I didn’t want to freak anyone out and quite frankly, I had a hard time finding nice enough words to use. Short summary, the hospital staff in the post-op area failed to hook Wyatt back up to his ventilator for over 30 minutes while he was recovering from anesthesia. For the ventilator-dependent child I think it goes without saying that we are lucky he survived. With that in mind though, how do we know what long term effect that could have on him? Given today’s dilemma, how do we know or even address the possibility that the sudden change in EEG results only two months after that hospital error may be related? As inexcusable as that hospital error was, I am not out to point fingers now. Given the lack of any other explanation though, it is something to consider. Then I ask, how can we now scientifically pinpoint when the changes in Wyatt’s brain occurred that caused seizure activity to begin, to either confirm or deny if the hospital error is the cause? Even more important is the question of how to bring up that conversation with the hospital staff without shutting doors since that is a potential legal liability and negligence battle?

As always, more questions than answers and even more worries and hurdles to overcome.

expect the unexpected

Today was supposed to be Wyatt’s long awaited electro physiologist appointment to finally get connected with someone who can better manage the cardiac risk factors associated with CCHS (Congenital Central Hypoventilation Syndrome). Well, as we were getting ready in the morning to head out the door, Wyatt, in true Wyatt fashion, decided he had other plans. Making his parents age by another ten years apparently was on the memo he forgot to send us. Mr. Crankypants gave a typical two year old response to something he didn’t like by throwing a tantrum, which in his case still means he held his breath until he turned blue and passed out. Sadly in our family that has become such a daily routine that we don’t even think twice about and so we went through the motions of cranking up the O2 and watching the volumes on his ventilator as he started to recover. As his skin turned pink again, he then started seizing. He’s done that occasionally when he managed to hold his breath just long enough, so it wasn’t anything too unusual. While he does his lovely breath holding spells anywhere from 1-15 times a day, seizures after the fact typically only occur maybe once a month and only last 2 minutes at the most. Well, expect the unexpected because when you throw in the factor of having a cold, things can turn ugly very fast. His seizure didn’t stop. To make matters worse, when he started his breath holding episode, he had a mouth full of food. Most of it I was able to get out right away but when he started seizing more food appeared in his mouth. Being at risk to now aspirate which would make a bad situation even worse, you just react out of instinct. With nothing handy right around me to hold his mouth open, I went for it and tried to get the last bit of food out when Wyatt happened to open up on his own. Unlucky for me, just like an alligator, as soon as he felt my finger in his mouth he clamped down hard. Thankfully, my finger is still intact with just some bruising, broken skin by the nail bed and what appears to be a cracked finger nail underneath. I screamed out of pain but at least the kid didn’t aspirate, I guess that was the priority, life over limp so to speak. 15minutes of seizure activity had already passed at that point and we had no choice but to load everyone in the car and head to the hospital. Calling the ambulance wasn’t really an option because we knew per protocol they’d have to take him off the vent during the ride and would take him to the nearest hospital where they are not equipped to handle the complexity of Wyatt’s care. With the Co2 Monitor, Pulse Oximeter and a cranked up O2 tank all hooked up, we jumped in the car. I have to mention here that our other three kids are absolutely amazing and went into full emergency mode without hesitation, helping load everything and everyone up as quickly as possible, and sadly, as if they had practiced it hundreds of times before in the last couple of years. Speeding limits were none existent driving to the hospital and not much explanation was needed to be escorted right into the trauma room at the ER. There’s just something about running in with a toddler on a vent and O2 tank that no one questions your urgency. Long story short, 1.5 hours of seizing were finally stopped after several attempts of getting a line into a stiff kid and then administering two doses of ativan which then knocked him out cold. After being moved upstairs to the PICU (Pediatric Intensive Care Unit) and a discussion with Neurology, we all came to the same conclusion that we will do yet another EEG (number 6 since birth) just to rule out an actual underlying seizure disorder by checking for residual signs and hoping to catch him during another breath holding episode sometime during the night once the Ativan wears off. However, we are all convinced that there is no seizure disorder but instead the prolonged lower levels of oxygenation during his breath holding episodes are in fact the reason for the occasional seizure activity afterward. The assumptions at this point is that today’s seizure was so intense because Wyatt has a cold and that combined with the long breath holding episode lowered his threshold for seizure activity. If this EEG confirms this hypothesis, then we will be discharged with a suppository seizure medication to be administered at home only in such instances as today. Overall, that is really the only “positive” outcome here because we have Ativan at home already for really bad days but it’s an oral medication that we cannot give him while in the middle of a seizure. A suppository would be the best option to stop a seizure and avoid another hospitalization.

In plain English what it comes down to is this. When Wyatt decides to throw a tantrum and hold his breath, turn blue and pass out, we always run the risk of today’s drama repeating itself. In other words, he’s causing his own downfall and there is nothing we can do to prevent it. I would love to say “oh poor baby, this genetic disorder is really hard on you” but what really came to my mind today was “you little shit”. Does CCHS suck? Yes, absolutely. Is it his fault or anyone else’s that he has to live with it? No, no one wishes for this, it simply is what it is. But the tantrum that started this mess today was over the simple fact that I told him he could not have another bite of food until he finished what was already in his mouth. Over that 2year olds frustration I almost got my finger tip bitten off to save his sorry ass and three other innocent kids have been traumatized once again. It was my middle finger, too. Wouldn’t that have been the icing on the freaking cake? I am so angry at him and the whole idea that no matter what genius parenting technique we come up with, it’s a no win situation. If we give in, he gets what he wants and only learns to manipulate people. If we apply tough love and let him know that he can’t always get what he wants when he wants it, then we have to do it with the thought that he might repeat today’s events completely intentional. That just simply sucks.

(And I swear if one more person at the hospital gives me the “He’s so cute.” line to try to make me feel better, I’m going to scream. There is nothing cute about a kid who has full control of everyone around him by threatening his own life if they don’t do as he demands.)

So, here's to my favorite song regarding Wyatt: Pink - True Love

http://www.youtube.com/watch?v=zsmUOdmm02A

"Sometimes I hate every single stupid word you say
Sometimes I wanna slap you in your whole face
There's no one quite like you
You push all my buttons down
I know life would suck without you

At the same time, I wanna hug you
I wanna wrap my hands around your neck
You're an asshole but I love you
And you make me so mad I ask myself
Why I'm still here, or where could I go
You're the only love I've ever known
But I hate you, I really hate you,
So much, I think it must be

True love, true love
It must be true love
Nothing else can break my heart like
True love, true love,
It must be true love
No one else can break my heart like you..."

how life changes once you have kids

When people ask how life changes once you have kids, it’s hard to come up with a good answer. No matter how detailed your explanation, the other person hasn’t experienced it yet. Therefore, it is impossible for them to truly understand.

Being 32 now with four kids ages 11, 8, 4 and 2, it’s strange looking back on how my life and my perspective on it changed over time. I am no longer trying to portray some image of myself like I did when I was single and trying to impress someone or trying to fit in. Life now is more of a “like it or leave it” approach and everything I do is in one sense or another connected to my kids needs. On the rare occasions that my husband and I get time to ourselves, we sometimes get on the topic of “What were we thinking?” No, not in the sense of what stupid things we did when we were young that we now regret, even though I realize you would probably like to read about that. No, simply on how even the best laid out life plan cannot prepare you for how you change as a person over time. Every experience, good or bad, changes you and usually you don’t realize it until much later. Who would I be if I didn’t have my first child when I was 20? What would I have done with my life if I went the traditional path of college, start a career, get married and then have kids? What would my career be? I know the “what if’s” are not practical as I cannot change the past, nor would I want to. But I do think there is value in asking these questions to learn something about yourself. So here is my retrospective view of my life so far:

In my early 20s I was out to conquer the world. I had something to proof, mainly to my parents. Nothing and no one was going to stop me and if someone told me it wasn’t possible, I’d be even more determined to prove them wrong. It was a very self-centered time during which I had no clue and no interest in what else was going on the world. Money was not an issue as long as I had food on the table, a roof over my head and clothes on my body and any job would be acceptable to ensure that much. Politics were just annoying. Protocols and expectations were meant to be followed only as much as needed but then challenged whenever possible. Having my first child in March of 2002 didn’t really change too much about my approach on life. In fact I was proud to say that I could juggle raising a child, working and going to college all at the same time. It was a challenge that I was eager to meet. When child number 2 came along in December of 2004, my goals didn’t change much at that point either but my speed of taking things on did. Life became more of a juggling act. Finding time to study became a multi-tasking job while changing diapers and throwing a meal together. Paying the bills didn’t get any easier either having to come up with daycare money for two kids. That increased financial pressure also made it harder to justify seeking a career that wouldn’t be a top paying job. But it was all I’ve ever done and luckily it was my passion, so somehow I was going to stick with it. What I didn’t realize at that time was that the struggle of putting food on the table for my family would change me in the long run. I can’t tell you how I survived of less than $15,000 a year with two kids while going to college. All I know is that I made it work and I learned to devalue materialistic things. That fear of living paycheck to paycheck again however will always be in the back of my mind. It scares me and pushes me to do more but it also holds me back from going after what I really want. I was no longer a risk taker who was out to challenge the world. From that time on I had to financially justify everything up front. It’s hard to explain to someone who has never been so dirt poor that they had to stop eating meals so they would have enough food to feed their kids. It’s a place you don’t want to be in. However, it’s also something that I am extremely proud of to have went through and come out of on my own. While my parents certainly wish they could have kept me from experiencing such hardship, I now view it as one of the best life lessons ever learned and it made me more resilient. Thankfully from that point forward life got a lot easier. In 2009, my husband and I were in a position for me to stay home with child number 3, born in April 2009, and start my own business on a part-time basis. While it wasn’t an option at that time, I wish I would have had that freedom with the older two kids when they were little. Having the ability to set my own schedule and avoid daycare altogether seemed like the perfect balance. Of course, in the moment we still got caught up with daily struggles and didn’t really appreciate that special time together as much as we should have. Giving in to the constant demands of three kids can still be overwhelming and suddenly made me want to send a thank you card to my own parents. But overall this structure to our life seemed to work best for everyone. With child number 4 on the way, the plan was to continue to do the same routine. I would stay home during the day with the kids and only work part-time on my husband’s days off. But then June 2011 came and our world would never be the same. If you’ve been reading my blog from the beginning, you already know what life has been like for us in the last two years. What I’m trying to get to here though is that child number 4 changes us forever. Having kids changes everyone. Kids bring back joy to the little things in life. They keep things honest and make you brutally aware of your own mistakes so you can become a better person. Having a medically complex child however only few people get to experience. All the things that we took for granted before were thrown in our faces and almost daily this incredibly unique child reminds us to get out of our rut and enjoy the smallest but most important things in life. I wouldn’t say, as some special needs parents do, that his diagnosis is a gift or a blessing. I strongly disagree with that because I wouldn’t wish this life on anyone. But I will say that without his diagnosis we wouldn’t have learned so much about ourselves and see the value in so many more things in life. Most people during their entire life never get to experience such personal growth in such depth as we have, and we are only in our early 30s. I am happy to say that child number 4 has brought me back to wanting to follow my dreams and to take life head on without worrying too much about the challenges ahead. I will never be able to get back to the worry free days of my early 20s and risks taken now are carefully calculated risks but I’m far from struggling to survive and closer to real happiness than ever before.

That’s how life changed for us when we had kids.

career options with a special needs child

I am Nicole Ott, a 2009 graduate of the UCF Bachelor degree program in Sport and Fitness. I would appreciate a few minutes of your valuable time to ask for some guidance. I have reached a point in my professional life in which I am at a loss on how to proceed.

I am not sure if you remember me from four years ago but I was the student who in her last semester pushed for early completion due to being nine months pregnant with her third child. I guess you could say I’ve always been a multi-tasker and embraced my circumstances to push forward with a deeper purpose. I distinctly remember having to write out and present short and long term career goals in one of our classes and upon graduation, I steered right towards those goals. The hands-on approach of your program, along with the detailed instruction gave me the confidence to pursue my dreams. With the support of my husband and three amazing children, I took on entrepreneurship and successfully ran my own Personal Training business in the Kissimmee/South Orlando area. Despite only working part-time hours in order to be with my family as much as possible, I still managed to appear on a radio show and contributed to a couple published fitness articles. Things were going very well and I loved every minute of it.

Life however, decided to throw a major curveball and my dreams had to come to an abrupt end. In June 2011, our fourth son was born with a rare genetic disorder which would make him lifelong dependent on a ventilator. To say that life changed in an instant would be an understatement. Without giving it a second thought, I dissolved my business and threw myself into the medical caretaker life that I would have to lead from that point forward. When not directly taking care of my son (or my other three children), my time was occupied with medical research, respiratory care studies, fighting insurance issues and medical advocacy, and learning sign language. It’s been a little over two years now since taking on this new life path. And while I am happy to report that our son is stable and acting like a typical two year old, I am personally now really struggling with the question of when, where and how to pursue my career again. Having no reasonable child care options for a medically complex child like our son, his care solely depends on my husband, my mother-in-law and mostly me. Part of me has accepted that I will not be able to work again until our son goes to Kindergarten and that even then, three years from now, his needs will still be the priority. At best, my work schedule would then have to fit his school schedule and in the fitness industry such a 7a-3p schedule is very hard to achieve. Another part of me though is the fighter who never wants to settle, who doesn’t want to wait another three years, and who wants to prove to her other kids that no matter what the circumstances, you can find a way to make your dreams come true. I have been out of the fitness industry for over two years now and I feel some sort of a disconnect. I have gone through tremendous personal change and even my entire outlook on life has changed so much that I am not sure where my original career goals fit in anymore. In a different life I have this Bachelor degree in Sport and Fitness and I have experience running my own Personal Training business but somehow that all seems just theoretical to me now. It’s like a void that hasn’t been filled for so long that I’m not sure how to get that passion for the fitness industry back. I know it’s still there somewhere in me, I just don’t know how to reach it and apply it.

My apologies for taking up so much of your valuable time. I am not even sure what it is that I am trying to accomplish here. I guess I am just reaching out from one professional to another hoping for some guidance. Maybe, despite of or because of my circumstances, there are opportunities out there that I haven’t considered, or maybe a unique idea could come out of this that could lead to a new outline of short and long term goals.

Thank you for taking the time to read this email and please know, your program not only opens doors for your students but also opens their minds to the many opportunities that life has to offer.

In gratitude,

Nicole Ott

New Year, New Outlook

Who would have thought a year ago, heck even 6 months ago, that we could stop focusing on Wyatt's needs as our primary daily worry.


The hiatal hernia repair surgery in November of 2012 transformed this kid in such a positive way, I sometimes have to take a second look to make sure the hospital staff didn't accidently give us back someone else's child. Recovery was drawn out and argumentative as usual and we had some pump feeding issues for a little while post-op but it was because of these same pump feeding issues, that we were so sick and tired of, that we dared to take a chance. Every doctor we had ever met was always so concerned that Wyatt would lose weight, they didn't even want to try weaning him off the pump feeding, always stating that his body already uses so much energy trying to breathe. If they knew more about CCHS they'd know that his body, well specifically his brain, really could care less about breathing ;) Knowing our son's personality though of readily taking the easy way out or playing the sympathy card when given the chance, we knew that if we stayed on this path of scheduled pump feedings he's never learn to eat on his own. So we first switched him to only a continuous overnight feed making sure he got all his daily calories he needed, and then allowed him to eat whatever he wanted during the day. Based on how much he ate during the day, we'd lower his pump feeding volumes at night. Wyatt did ok with that method but still had days where he was simply too lazy to even try to eat and since he had all his calories over the course of the night, he wasn’t hungry for breakfast and he often had stomach pains from the pressure of the pump feeds. And frankly, hooking up a pump feed every night and making sure it doesn't come undone just to leave a big mess all over the place was getting old very fast. So we decided, what the heck, we'll try it for three days without any pump feedings and see how he does. Damn I wish we would have had the guts to do this a long time ago. By day two he had discovered his love for food and all we had to do was encourage him to drink sips of water between bites. That was the end of the pump feeds. Ironically it took us blindly giving it a shot against doctor’s recommendations and simply trusting in Wyatt’s abilities to realize he didn’t have feeding issues in the first place, he has saliva production issues that caused him to get frustrated while eating. He doesn’t produce hardly any saliva and therefore food gets stuck on the roof of his mouth easily. No doctor was aware of that or had even considered that to be a possibility. It was always assumed that CCHS also meant oral motor skills delays. We always knew his skills were there but couldn’t figure out why he wasn’t progressing in the oral feeding department. A few sips of water in between bites, problem solved! That’s what I hate about having a medically complex child. You start to over think everything and treat everything as a medical issue first before using your common sense. Well, lesson learned – simplify! Not only did the surgery lead to him now eating independently (NONSTOP), Wyatt is now also SLEEP-VENTILATED ONLY!!! I never thought we’d get to this point but again, it took having the guts to trust his abilities! For those of you who do not have a child on a ventilator, I’m sorry, there is no way I can explain to you what a difference that makes. Sure, we still have to take his equipment with us everywhere we go and we are still too nervous to try to let him sprint while driving in the car but we can pick him up and go in our backyard or upstairs now and leave his equipment on the chart. Since being able to come off his leash as I call it, he’s made huge progress crawling like he’s racing someone, crawling up the stairs, and standing up and walking assisted. He knows his limitations when he’s hooked up to the vent and is now able to take full advantage of his freedom when he’s sprinting. He still throws his tantrums and passes out so we can’t leave him out of sight but him being mostly independent of the vent during awake hours is a huge relief on all of us. And now that he’s vocalizing more making up his own language with the weirdest sounds, you can often audibly tell where he is at which is also something that wasn’t possible before. I swear he can call whales and sea lions, imitates donkeys even though he’s never met one, and plays like a dog by still picking up balls with his mouth sometimes. And the eye contact he gives you is so hard to resist. He’s a character, always ready to entertain and he so knows how to wrap people around his little finger… Last year we were not able to enjoy these moments because he always had some sort of medical issue and threw so many blue spells we could never relax. Today, he still throws 1-5 blue spells a day but we’ve learned to “ignore” them and only observe from a distance as they are now mostly attention getters and when hooked up to the vent, he usually recovers on his own. He’s learned to accept car rides as normal routine and rarely throws a tantrum in the car anymore which has allows us all more freedom and we are comfortable enough to not have an adult sit next to him in the backseat anymore. Heck, we’ve gotten so in tuned with his routine and cues that we don’t even hook up the Pulse Ox or CO2 Monitor to him anymore unless he’s sleeping or seems a little off. Overall, 2013 so far has started to be much more relaxing than 2011 or 2012. Let’s keep our fingers crossed that it will stay that way, at least for the most part.

 

Life as I know it now

I know, I know. I’ve been really slacking on writing blog posts. To be honest, I simply didn’t feel like talking about Wyatt anymore. It’s such a bitter sweet tool. This blog started out as my own personal therapy session. I could put in writing any and every thought that crossed my mind. I didn’t have to hold back and it allowed me to process all the ups and downs of this thing called CCHS. While this blog certainly has served its purpose and today I even hope that this naked truth of my emotional roller coaster ride can help someone is this world, it has now become a tool for me that can also easily backfire.

When Wyatt was first diagnosed, all the other families affected by CCHS told us, the first year is the hardest and then it gets easier. What no one told us was why. So here’s my viewpoint so far having surpasses that one year mark by a couple of months now. I think the term easier is misleading. Having a healthy infant is hard. We have to get to know that new person, their likes and dislikes, their personality and what life changes that will entail. As exhausting and sometimes isolating as it may be, every new accomplishment of that perfect little human being seems worth a celebration and we can’t wait to see when the next milestone is going to be reached. Having kids turns us into this whole new person who almost overnight becomes less concerned with their own personal goals and suddenly feels the urge to tackle the world in the best interest of their child. Having any subsequent children, we start to have less and less time focusing on all the little accomplishments and shift more towards tackling the bigger battles such as what school to choose. Now consider having a child like Wyatt in the mix of that already challenging balancing act. Initially when we got the diagnosis, it almost felt like a relief to me because at least the medical problems that remained a mystery for so long finally somewhat made sense. Somehow putting a name to it made it all just a little bit easier to deal with. While waiting for several weeks for the test results of course, I had already done my research on what such a diagnosis would mean and what future medical options we might have. I felt prepared even though my mind played tricks on me every second of every day wishing for a medical answer yet hoping I’ll magically wake up from this nightmare. Once we got the answer that we were and were not hoping for, I went even further into overdrive mode. Now the practical aspect kicks in of learning everything there medically is to know so that I can adequately take care of the daily needs of this special child. There wasn’t really any time to reflect and process what’s going on. The complete load of that freight train of emotions hit me much later after we were already settle in at home for several months. One day something seemingly unimportant just opened the flood gates. Suddenly I realized, to no fault of my own but simply out of necessity, I was so busy juggling the medical needs of this one special child and chasing the next hopeful treatment option that I didn’t really even know who that person who’s living in our house attached to all the medical equipment was. I suddenly realized how much time taking care of that one special child has led to me missing valuable time with our other children, how much we all had to give up to be where we are today. The first year is the hardest not because of all the medical reasons. Sure, those are challenging and come with their own up and own emotions. But what was the hardest for me was to take the time to grief the loss of my hopes for my family’s future and accepting what is, the unknown. I had to learn to accept that doctors are not the heroes with the magical answers and cures like most of us were taught when we were young. With such a rare and not well understood diagnosis with an unclear medical treatment plan, doctors don’t know anything. In fact they are even scared of your child and we as the parents are all alone in making the right medical and non-medical decisions. Looking that fear in the eye and believing that the unknown and the loss of control are not my worst enemies, that took time. Hell, I still fight the battle in my own head sometimes.  That’s what makes the first year the hardest. The first year was very isolating because we were just treating water and didn’t even realize that we were losing  a part of ourselves. If I was not dealing with insurance, medical equipment or yet another medical challenge, I was busy contacting every researcher and other affected family. While it is great to have those contacts and that support system, I’ve also noticed that because of my personality it can become a downward spiral. Not even the most experienced specialists nor the CCHS families who have been living with this condition the longest have clear cut answers. Just like a healthy infant, each child is so vastly different. I had to learn to stop looking for answers and stop looking at my child medically and stop over-analyzing every move he makes. Instead I had to pay attention to who he is as a person and how we as a family could repair that unintentional disconnect that slowly marched in between us over the last year. In my darkest days I realized that I will not be a good mother to any of my children nor a good wife to my amazing husband if I only focus on life with CCHS. Since I am an all or nothing type of person though, that meant I had to let go of doing research and making treatment plans which is the complete contrary to my hard to break habit of always having to have a plan. It takes a huge amount of effort for me to simply live in the moment and not make comparisons to the way things should have been. Coming to that realization and taking that dive into the deep also known as leaving my own comfort zone, that’s what made the first year so incredible hard for me.

I can’t say that I have succeeded in putting that realization into action just yet but it’s work in progress. This is the reason why I haven’t been posting on here much anymore. I have to make the conscious effort to get to know my four children all over again for who they are today. I have to ask out loud for quality time with my husband so we can get to know each other all over again in the middle of our new life together. I also have to speak up and demand time to myself so I can figure out who I am now instead of trying to chase down who I used to be. So here I am making the first step.

To all my friends and family out there: I know you care and I am sorry for previously turning down your efforts to help. I’m not good at asking or accepting help, nor do I even know exactly what kind of help I could use. I will work on that. It must be difficult for someone on the outside to know what to say or do. Sometimes the best help is to simply be there. Even if it hardly ever works out, please don’t give up on offering to include me or my husband in get-togethers. Don’t worry about how much effort it would be for us, suggesting a play date or a cookout is still a good idea. Discussing parenting or career issues is actually nice because in the end we all face similar difficulties.  So let’s face the world together again!