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.