a perfect day

Yesterday was truly an AWESOME day. We are starting the month of right. My intention was to have a good old family breakfast around 9am Sunday morning so we invited Grandma and Grandpa over to join us. I figured on a day when my husband is off, Wyatt (who sleeps in our bed) tends to sleep in a little longer. So we arranged for the nurse to come at 8am instead of 7am hoping we could all sleep just a bit more. And sure enough, it almost worked. Wyatt slept through the night, woke up at 630am with a full blown episode just to keep us on our toes, but then went back to sleep till 730am. Unfortunately Wyatt was still really sleepy when he finally got up and didn’t want to be put down. Therefore, my plan of having breakfast ready by 9am wasn’t going to happen. Amazingly enough though that turned out to be good thing. I had the privilege to witness my family in action in what can only be described as a rare occurrence. Everyone worked together as a team to make this breakfast happen… and wait for it… without arguing. It was breathtaking. Oh, I probably shouldn’t use that word - just kidding. It was really cool to watch. Everyone did their share of picking up around the house, setting the table out on the back porch and cooking the food. And when it was time to sit down and eat, even Wyatt was contend with the nurse for a little while just an arm’s reach away from us. Afterward the three boys tossed the football around with Daddy in the backyard while Grandma got to sneek in some snuggle time with Wyatt. We even surprisingly succeeded to keep Wyatt awake and entertained until his lunch time feed. The two big boys then got to go on a ride in Daddy’s mustang while the two smaller boys took a well deserved long nap. The afternoon and evening concluded with water hose chases and throwing burgers on the grill for dinner. It was as perfect of a day as we hadn’t had in a long time.

Nothing but boys

Oh boy, oh boy. There is never a dull moment around here. Apparently our entire family should start taking happy pills. There is the ten year old who is very self-driven, argumentative and a big time planner (much like myself) but who still hasn’t made friends with spontaneity or a sudden change in his plans yet. Getting him to be a kid and just play is the equivalent of torturing him so he’d rather do chores instead. Then there is the seven year old who is typically the one who makes everybody laugh, can change the mood of the situation (much like my husband) and tries to skip out on chores, yet he’s going through the me phase mixed with a lack of control of his emotions right now. Then we have the almost three year old who is a goofball, has a remarkable understanding of cause and effect and consequences of certain actions, which almost naturally now has made him an expert at taking advantage of that knowledge and changing the subject in an instant if needed. And then there is 10month old Wyatt who can instantly switch from having the biggest smile in the world to showing you his evil twin, topped with major stranger anxiety leading to clinginess right now. I love them, I love them, I love them… but boy are they driving me nuts sometimes. They have a way of either all tag teaming and everyone’s having a meltdown at the same time so that you can’t even get a word in and wish you had a freeze button. Or they will stagger their days so that by the time day four comes around your brain is simply fried. The biggest challenge is to NEVER let them know that they could rule this house if they actually put their heads together and planned it out just right.

I wouldn't change it for the world. They make me proud! (http://www.aprilsgrapevinephotography.com/)

hope vs reality

Teething is such a bitch. I don’t really remember the details for my other three kids aside from them being really clingy, so I have to assume it wasn’t too bad when they were teething. Wyatt on the other hand is miserable.  For a kid who hasn’t figured out yet how to just cry, it’s been hell. He’s responding to teething just like most kids would. He’s clingy and only wants to be held by me (which leaves the nurses just sitting around helplessly). He wants to sleep but is too uncomfortable to get any good rest. And since he can’t communicate any other way yet, he cries. But of course in Wyatt’s case crying means a full blown episode each time. The biggest problem for a child with a trach is that teething causes more secretions, therefore we have to suction him more frequently. The strain of each episode unfortunately has the same effect and we have to suction him again after almost every episode. That in turn makes him mad and more irritable and here we start the cycle again. It’s a no win situation. I have lost count how many episodes he’s had daily for the last six days. He hates Orajel, so Tylenol has been our best friend. Tylenol around the clock though means it’s causing him some constipation. This poor guy just can’t catch a break lately. He has six teeth already and for one of them he was this miserable also. But of course given that only one of his six teeth caused him this much pain previously, we were hopeful that it might get easier with each tooth following. Wrong! Damn hope, I hate you! I disapprove of labels but there is a reason why I consider myself a realist. I look at things that are right in front of me to deal with but I also like to be prepared for the worst case scenario by doing the research or playing it out in my head. People call me pessimistic for thinking that way but man, it leaves so much more room to be pleasantly surprised when things work out better than you expected, instead of crushing your hopes that were statistically unfavorable in the first place. Apparently yesterday was a day for people to gang up and try to convince me to look at the best case scenario though. First our nurse kept saying that she’s hopeful that Wyatt will eventually grow out of this and learn to breathe better. If you’ve done the research on CCHS then you’d know that’s not in the roam of possibilities. Despite me telling her that it’s not an illness but rather a genetic mutation, that there is no cure for CCHS, and that he’s dependent on some sort of mechanical ventilation for life, she insisted that she will hang on to that hope of a miracle because she’s seen it with premature babies who were given a grim outlook. That’s not really comparable but reasoning with her was pointless. Her riding the subject when I had just finished bagging my son for the 8^th time in less than four hours though maybe wasn’t the best timing to push the envelope. She’s a great nurse and Wyatt really likes her on his happy days but I don’t have patience for conversations like these. And then our DME case manager came by to once again swab out several O2 tanks. We went through four big O2 tanks this week alone just because of all the Ambu bagging. Of course, he had to mention that he just came from his other CCHS case. He mentioned how this child is four years old now and “running around like a normal kid” and that should give me something to look forward to. He proceeded to try to give me the positive outlook that this child is only vent dependent at night now and can move around freely throughout the day. He threw in there that this child also used to have blue spells but not as severe as Wyatt. He explained that this child’s version of a blue spell was a tinge of blue in the skin color from time to time but the airway never clamped off completely. I wish it were that simple with Wyatt. And I do have hope that he will eventually be able to come off the ventilator again while awake. But there is no way of knowing for how long of a time frame he can tolerate with his CO2 levels staying in range or whether he’ll ever be only nighttime dependent. As of right now, it’s not looking that way. It’s not in my nature to cling on to hope alone. If it happens GREAT but if that hope of a drastic change in his circumstances is the only thing I’m waiting for each day, I’m missing out on the now. I have to look at how to make life possible for him even if he stays 24/7 attached the ventilator with Oxygen requirements. Diaphragm pacers are an option but not a reasonable one until he’s about school age. And even then, they have their own set of issues and are by no means a failsafe option… On my lost in depression kind of days, I like to look at pictures or read stories of other CCHS kids and how they are progressing. But in reality, all CCHS cases are so vastly different, I cannot let myself get lost in comparing cases. I have to look at Wyatt and let him determine what he can or cannot do and when.

Let’s put my issues aside and recap what’s been happening on the Wyatt front.

As you saw in my previous post, Wyatt finally showed off his skills of sitting up on his own. I can’t even explain how much of a relief that is. As much as I know not to look at the time frame of milestones too closely, there is always that nagging question of how much of a neurological impact his daily struggles have. Having him finally sit up on his own unassisted and for over 30minutes nonetheless playing with his toys, that’s more than reassuring that he has his own plans of what he can and cannot do, as well as when and how he’ll do it. The coordination is definitely there and the rest of his strength will come. His well visit at the Pediatrician last week confirmed that he is gaining weight appropriately though he is short for his age and we will need to continue to keep an eye on his height progress. Otherwise, he is doing well and the Pediatrician switched him to once daily multi-vitamin with iron instead of a twice daily iron supplement. On the Pulmonary front, well, I haven’t made another appointment yet even though he was supposed to be seen by this week and get his last Synagis shot. Everything that needed to be addressed has been done through emails and phone calls only since his last hospital stay. Quite frankly, unless absolutely necessary I’m simply scared to get in a car with Wyatt again since our traumatic car ride home from Chicago. And my frustrations with the daily vent setting jeopardy over the last few weeks are making me less than patient to see another doctor at the moment.  Since Chicago about a month ago and Wyatt’s following illness, we’ve had ongoing frustrating trials of once again finding stable ventilator settings. After every attempt has failed to hold true for more than 24hours and Wyatt still having an increased number of episodes daily, we concluded the only thing left that was recently changed is the actual operating mode of the ventilator. CAMP switched Wyatt to Assist Control mode vs his previous settings in SIMV mode. In simple terms, in Assist Control Pressure mode the ventilator does all the work for the patient and provides the same amount of pressure with each breath as preset on the ventilator. In SIMV Pressure mode, the patient can initiate breaths on his own and the ventilator will only kick in to the preset numbers should the patient not reach the minimum desired pressure on his own or should he not take a breath within a set time frame. Therefore, Assist Control means the ventilator is in control of each breath taken vs SIMV means the patient is in control of when a spontaneous breath is taken and with what intensity (a.k.a. pressure). Wyatt has always been on SIMV for that very reason so that he can initiate breaths on his own and be in control of his own breathing as much as possible with the ventilator being his fail safe backup system. However, SIMV mode makes it a little harder to find a baseline ventilator setting because his CO2 readings won’t be as consistent if he is breathing over the ventilator. Therefore, we can only speculate that this is the reason why CAMP switched him to Assist Control mode to find optimal ventilator settings in the short amount of time that they had. So after ruling everything else out at home we came to the conclusion that this mode change is the only plausible reason left for Wyatt’s continuous discomfort. Therefore, we talked with our local Pulmonologist and switched Wyatt back to the SIMV mode. The difference was instant. He was suddenly laughing again and wanted to play instead of being clingy and cranky all day long. Why that thought never crossed our mind earlier, I don’t know. Regardless, we had finally found the underlying issue and fixed it. That said though, since the beginning of this week we are now battling teething again and therefore have again started a vicious cycle of numerous daily episodes and clinginess. Apparently this struggle is never-ending. Tylenol is our best friend but unfortunately Ativan had to be used a few times also. I hate Ativan and I really wish there was an herbal alternative for infants to ease anxiety and act like a short term mild sedative. It would be so nice to find a holistic pediatric doctor to consult with. When Wyatt is not teething however, we have figured out a pattern to Wyatt’s episodes. Teething discomfort aside, he seems to always be at greatest risk for episodes right towards the end of his (G-tube) feeds at which time he is also the most tired and gassy. We tried gas drops, gripe water, different formulas, different volumes and rates for each feed but nothing seems to be working. Sometimes just holding him in our arms until he falls asleep prevents the episodes but then other times he seems so uncomfortable and nothing soothes him that we are literally just an arm’s reach away from the ambu bag and O2 tank ready to revive him again. You feel so helpless. Again, I wish there were herbs for infants that could ease his feeding discomfort and let him relax enough to fall asleep without the drama. If anyone has any suggestions, please fire away.

Milestones

On March 19, 2012 Wyatt once again proved that he will do things whenever he feels like it. This is a picture of him sitting up for the first time unassisted. Not only was it his first time trying but he actually sat there continuously for over 30 minutes. He probably knew how to do it for a while already, he just never felt like showing us his skills up until now. Little stinker. Over the last week, he has also managed to learn to click his tongue which is even quietly audible, and I swear he is mouthing the word mama.

Thank you, Wyatt. I needed to see you do that. Despite all the worries about the possible negative neurological consequences of your numerous daily cyanotic episodes, you once again proved that you're in charge and worst case scenarios are just that.

counseling

Supposedly, admitting you have a problem is the first step. I was told that being able to come to that conclusion on your own also means you are not as crazy as you thought because truly insane people don’t know they’re crazy. So last week I reached out to a clinical social worker and made an appointment. Ok, let me clarify. Without giving out contact information, I emailed a few counselors to scope out the field and get details about how the sessions are set up, financials, etc. After a couple back and forth emails with one particular counselor, he must have looked me up in the phone book and called me back. So I gave him credit for making the effort and I met with him last Wednesday.

It’s a very strange feeling walking into a counselor’s office for the first time. I know people seek counseling for all sorts of reasons but for me, I always looked at counseling as a last resort that I would only use after I have exhausted all other options and I can’t solve the problem myself. And even then it’s an absolute last ditch effort hoping the counselor can somehow magically give me the answer that will make things turn around. In other words, I am more than skeptical that counseling will help me but I didn’t know where else to turn. Despite everything within me being against this, I made the appointment and showed up. I’m sure my outward first impression also gave off that vibe of me being very nervous and resistant. First order of business was the uncomfortable small talk, “Did you find this office ok?” I hate general questions like these. They seem pointless. And then there was the “How are you?” Did he really just ask me that? Why does he think I’m here? I bit my tongue for this typical everyday no one really cares about the answer kind of question and replied with the socially accepted “I’m ok.” I have come to hate that particular question most of all over the last nine months. As I entered the small office room, there was a corner desk to my right filled with a few files and books. Straight in front of me were a couple of chairs separated by a small end table that had a bowl of candy and a tissue box on it. The wall behind the chairs had an oriental room divider which I assume was there for decoration purposes only because there sure wasn’t any space left to divide. There also was what looked like a child’s painting on the floor next to the divider. I began to wonder what that child must have been here for. I took a seat furthest away from the desk and kept scanning the room. My thoughts were interrupted by the counselor asking me how I would like to pay for this session. I handed him my credit card for the $80 charge and explained that I would prefer not to use insurance to avoid anything going on my medical record. What I didn’t tell him was that I wasn’t sure whether I’d be back to see him again after this first session. He turned around to face his desk, leaving his back towards me, to charge my credit card and to input my driver’s license information. I continued to scan the room. On the wall behind me he had also placed a fake plant next to the room divider. I again caught myself wondering what that room divider was for. It appeared that he made a good effort to make his patients comfortable and relaxed in his office but to me it just seemed fake. I was staring at the door in front of me, tempering with the thought of excusing myself to the bathroom and leaving. But damn, I already paid for the session. The door had a white noise maker attached to the bottom vent to keep conversations confidential. Before I could hatch out my escape plan any further, he finally turned his desk chair back around to face me and attempted to break the ice by telling me that everything behind this door is kept confidential, unless of course there is reason to assume that I would harm myself or someone else or that there is abuse involved or other legal issues. Blah, blah, blah. I get it, he was covering his legal behind. Then he proceeded to tell me about his education level and his 35 years of experience and proclaimed to not have all the answers but that we will work together to find them. This all seemed like such a scene out of a movie. And then came the big question “What brought you here?” Oh boy, where should I even begin to explain the dramatic changes in my life that occurred in the last 9 months? I briefly summed it up by explaining Wyatt’s health complications immediately following his birth, his 98 days in the NICU, the rare diagnosis and his ultimate long-term medical needs, and finally his numerous daily cyanotic episodes which I was able to deal with before we went to Chicago but that are now putting me into a state of panic. Just as a counselor is supposed to do, he sat there, listened and took some notes. He was however unable to hide that facial expression that I have seen so many times before when I first talk to someone about Wyatt. It’s that expression of shock and disbelief and pity. Ok, maybe it wasn’t pity and it really was just heart-felt empathy but still, these expressions have no meaning in my book and only make me more uncomfortable and angry. He also took some notes about the family dynamics and the ages of my other three children. Then he asked me to switch seats with him and do a computer-based self-assessment to gage my emotions at this point in time and to then be able to revisit this tool every so many weeks for comparison to track my progress. That all seemed eerie as it is a similar approach to what I do when I first consult with a new client for Personal Training. The test was comprised of different questions regarding your thoughts and feelings and you had to pick an answer ranging from never, to rarely, sometimes, often, and all the time. Before even starting this assessment I knew what the result would be. Of course, almost all the questions are aiming at your worst feelings and thoughts as if this test is trying to put you back into that mindset. Big surprise, I scored very high on depression and anxiety, moderate on PTSD and thanks to a few positive questions geared toward whether I actually have happy days too, I also scored mild on bipolar. Stupid test. I began to wonder whether this session was worth the money spent. Of course the counselor responded by stating that he is very concerned with my high level of depression and anxiety and that “we” have to address that first before psychotherapy can be successful. He asked me what my stance is on medication to which I basically explained that unless I’m dying, which I’m not, I’m typically against medication. I also can’t afford to be dealing with side effects that could cloud my judgment and responsiveness toward Wyatt’s continuous needs. As an alternative which he claims is just as effective, he then stated that he has a holistic doctor working with him in his practice who approaches psychological treatments through herbs, massage and acupuncture among other things. This doctor currently offers a free consultation and would then charge me the same rate for future appointments should I choose to go that route. That sounded more along the lines of my beliefs and approach on things so I agreed to a consultation with that doctor for this Wednesday, right before my next counseling session. Unfortunately, that agreement already marked the end of this 50minute $80 session and the counselor ended our conversation with saying something to the effect of how courageous I am for taking care of Wyatt the way I do and that while it may only seem like something that I feel I have to do, most people wouldn’t do it at all. Again, one of those bite my tongue moments. I replied “Thank you!“ but I didn’t mean it. What I really wanted to say was that I’m sick and tired of hearing these comments. These comments are coming from a place of insecurity and fear in other people and it is not helpful to me at all. I would hope that if someone else were faced with a similar situation happening to their own child that they would also do the best that they can with the tools they have available. So telling me that I’m somehow doing more than other people would is bullshit and just another small talk kind of response, wanting to make me feel better yet only making things worse. What happened to being honest? If you’re uncomfortable, can’t relate and don’t know what to say, then just say that. I’d think far higher of you for being straight up honest.  

I’m sure you can tell by my writing style that I am struggling with the idea of going back for another session. I want to meet with the holistic doctor because I know from my own profession that good nutrition along with the right supplements can make a world of difference, not just in how your body feels but also how your brain functions. Counseling though I’m not so sure about. I don’t think this counselor is a good fit. I’m not even sure if counseling is for me at all. They way I see it is if someone you love dies, you go through the stages of grief but then eventually it gets easier and you move on with your own life because death is just a part of life. Now imagine having to face the possible death of your own child over and over again every single day. Imagine going through those stages of grief every day that your own child turns blue and lifeless and you have to revive him. Every time he has to go back to the hospital, you again start all over. It doesn’t end. How do you cope with that when there is no end in sight? What’s the sense in discussing different coping strategies to something that can’t be coped with because it’s never over? How can you even find a counselor who can understand what that feels like every single day? It doesn’t matter how often or how detailed I explain everything. Unless you’re living in my shoes, you can’t possibly understand. So how can you possibly help me?

So here is what I know I have to do.

1.       I have to let go of always being the one taking care of Wyatt. I have to ask for and accept the help available. Anyone who wants to help but is not trained in all his care simply needs to be trained.

2.       I have let go of the idea of being able to protect Wyatt 100% of the time. No one can do that and shit can happen at any time. If I can learn to accept that as a given fact then maybe I can finally shut my brain off enough to live again.

3.       I have to get my nutrition back on track. Good fuel put back into my body will give me the energy back to make it through the day, will help me to regain my mental focus, and to balance out all these brain chemicals controlling my mood and thoughts.

4.       Only after my nutrition is back on track can I consider working out again. As much as those endorphins would help my mood, trying to workout now as weak as I am with all the physical signs of depressions such as nausea and lightheadedness, it is simply not save. Nutrition has to come first.

5.       I have to keep writing. It’s my way of letting my thoughts and feelings out instead of everything spinning like a revolving door.

6.       I have to find ways that my husband and I can go out again by ourselves so we can find topics to talk about again that do not evolve around our daily struggles. My husband and I are both very good at always putting the kids first and making sure they each get their share of special one on one time. We have to put the two of us back on that priority list also.

7.       And here is the biggest challenge of all that will ultimately determine my success in all the aspects above: I have to learn to recognize the negative thoughts and feelings. If I can learn to acknowledge them as soon as they start creeping in, then I can learn to shut them up and make them take the detour.

Acceptance is hard

In just nine months, CCHS has tested us in more ways than anything else I could have ever imagined. I’d like to say that somehow all these struggles will turn us into more empathetic and live in the moment kind of people. While it is true that we all in our own ways now have a different outlook on life and approach things from a different angle, I’m also a realist and know that eventually we will go back to bitching about the little unimportant things in life. But that’s ok. I’m actually looking forward to that moment because it will symbolize that we have a reached a point in which CCHS doesn’t have to be the main focus around the clock 365days of the year anymore. While some people hang on to the hope of finding a cure, I’m simply hoping and smiling at the thought of eventually having those petty moments of creating our own useless non CCHS related stress and then realizing how stupid that is. That’s my overall goal. In all honesty, I do not believe that there ever will be a cure for CCHS. And before you jump to conclusions and label me as a pessimist, let me explain.

CCHS is a very complex yet little understood genetic disorder. So far nine (9) different mutation levels of this disorder have been identified through genetic testing, plus there is another disorder called ROHHAD that represents in a similar pattern but cannot be tested for yet. Within these nine different mutation levels, there are vastly different outcomes. Based on current research, it is unclear what pattern each mutation level follows in regard to the associated risk factors of cardiac rhythm abnormalities, cancerous and benign tumors, hypoglycemia, growth hormone insufficiency, vision problems, balance problems, learning disabilities, facial abnormalities, and the list goes on. Some CCHS patients that fall into the category of the most common and most studied mutation levels (20/25, 20/26 and 20/27) have everything imaginable to deal with additional to the breathing management, and then some CCHS patients within those same mutation groups have no other complications whatsoever. And then there are the CCHS patients with the higher expansion numbers (20/28 through 20/33) who have even less research to go by. At first it was theorized that the higher the expansion number, the worse the outcome. But then over time that theory didn’t hold up. Current data only suggests being proactive about screening for these risk factors but it cannot even give a glimpse of a future prognosis because each CCHS case known today is so vastly different. In other words, all we know is that these other risk factors were identified because they have been found in other CCHS cases, some of them more often than others. No one has an answer however whether theses other complications are truly CCHS linked or whether they are just another one of those winning lottery tickets. Chances are that if it has to do with the autonomic nervous system, it is probably linked somehow. All other risk factors though I personally am skeptical that they can be blamed on CCHS alone. Learning disabilities for example, any child can have those for multiple reasons. Cancer, well there has been so much research done in that area over the years and we still don’t know exactly what causes it. Vision problems are an issue for millions of people in the world… So I try to stay away from blaming everything on CCHS. With all that said, this is why I do not believe there will ever be a cure for CCHS. Even if research eventually figures out when and how CCHS is caused, there are too many mutation levels with too many variables in outcomes to find just one cure for every CCHS patient. Does that type of thinking make me a pessimist? I don’t think so. I’m just a realist who is trying not to miss out on what’s happening right in front of me at this point in time instead of being too pre-occupied looking and hoping for a miracle.

So in this never-ending cycle of the five stages of grief that the family of a CCHS patient has to go through, let’s talk about acceptance. (By the way, it’s a never-ending cycle because you go through it all over again each time you hit a setback or a hospitalization. Your only hope is that you start to go through this vicious cycle a bit faster each time.) Here is my first draft of a list of things that I cannot change:

1.       I have a special needs child. I hate that label but it’s true. There is no point in fighting it, it simply is our job as the parents now to make sure that this label doesn’t define who Wyatt becomes as a person.

2.       Standard programs for special needs children will not suffice. Being a mechanically ventilated child ultimately means it won’t be as simple as developing an individual education plan when Wyatt enters school. In fact, he may not have academic problems at all. Wyatt will need someone who can be his shadow. Someone who can stay in the background as to not interfere with his social development, yet always be close enough to intervene for medical reasons. It will have to be someone specifically trained to attend to his needs. At the beginning of each school year, we will also have to discuss his medical needs with his teachers and possibly parents of other children who will be in his class. We also have to be prepared to deal with prolonged medical absences from school.

3.       My child will always need mechanical ventilation. No matter what the medical advances may be in the future, our son will always be dependent on artificial ventilation of some sort. There may be better options applicable to him as he gets older other than a tracheotomy and a ventilator but none the less, he will never be able to be weaned off mechanical ventilation.

4.       We will always depend on number to know how our child is doing. CCHS means we can’t depend on physical signs and symptoms to identify when something is wrong with Wyatt. He won’t run a fever when he’s sick and just because his skin color looks good doesn’t mean his CO2 and blood oxygen levels are good. Objective monitors are the only way for us to know and he simply can’t live without those. It will always be a balancing act of keeping his numbers in check.

5.       We will always have to be ready to fight. Medical bills won’t go away. Arguments with durable medical equipment companies, pharmacies, developmental therapists, doctors, nurses, respiratory therapists, and other specialists are bound to come up every so often. Continued research and education on our part are a must. Getting less than adequate, quality sleep is a given fact. Always being on high alert for the next unexpected road block won’t go away either. These issues may space out a bit more over time (or at least I hope they will), but they will never completely go away.

6.       The never-ending yet unintentional comparison. We have four children but only one with CCHS, we have friends and family with children, and we see children of complete strangers everywhere we go. It’d be naïve to say that we are not going to compare Wyatt’s progress with that of other children. But I believe that’s a good thing because it’s a good challenge. It forces us to not give up and always reach for higher goals. We just have to learn to let go of a specific time table when he is supposed to do certain things, and we may also have to steer away from the normal ways of accomplishing these goals.

7.       We will always have to deal with the looks. No matter where we go, there will always be people staring or making comments without thinking. Most likely it is because they don’t know how to deal with the situation and it makes them uncomfortable. Either way, this is a tough one to deal with. Some days I want to say something sarcastic back and some days I’m ok with ignoring it.

8.       Its’ a lonely path. Being a parent of a special needs child is tough enough. Being a parent of child with a rare disorder that is not commonly understood is even harder. It doesn’t matter how detailed you explain what daily life is like, you’re still in this battle alone. You want to connect with parents of “normal” children but at the same time, it’s so hard to hear those parents complain about the normal issues of raising a child.

I am by no means claiming that I have truly accepted these facts, but maybe writing them down will bring me one step closer. It is no secret that the last few weeks have traumatized me and that I am struggling to get up every morning right now. I’m not ashamed to say that I am scared to be around my own son. I used to be able to handle his daily episodes but now each one of them sets me into a silent panic mode. The anticipation of an episode alone sometimes proves to be too overwhelming for me right now. My self-defense mechanism tells me to keep my distance from him to preserve my sanity should anything happen to him. I don’t have the option to stay away though which makes dealing with PTSD so much harder. There are no breaks. No one can just come in and take over for a few weeks until I can find my grounding again. Even home nursing can’t provide that kind of a relief. So it is up to me to somehow find a way to cope yet deal with the ongoing stress at the same time.