Lately I have been reading many comments on the personal pages as well as public pages of children who are diagnosed with CDKL5, Rett disorder, and other types of neurological/degenerative types of disorders. Typically, the main post will be a vent of sorts from the parent regarding how challenging things are and that they are about to lose, have lost, or are on verge of losing their faith in G-d. As I scroll through the replies to these posts, I see the same types of words written throughout. The majority of them include nudges to not totally give up faith, a handful are of people who have already lost faith themselves and they just type, “I have been there” and “you are not alone”, and a handful are from those more fervent believers. The type of people who feel it is their job to remind the poster that they should never give up on G-d, that G-d has not abandoned them, and the list continues on with similar sentiments. What I can say from a religious parent of a child with CDKL5 is, “I get it, you are not alone, and some days I am unsure myself where I stand with G-d”.
Regardless of your religious affiliation, regardless if you are the most devout person in the world, unless you are the parents of a child with CDKL5 or any other special needs child you do NOT get it. You might be a grandparent, a sibling, an extended family member, you might even live in the same house as the child diagnosed, but if you are NOT the parent, then you have NO idea the emotions that a journey like this can entail. Even if you are a parent with a child with the same diagnosis or one that is similar, you still have NO idea what each individual parent is feeling in their specific case. This does not mean your support is not wanted. This does not mean that your views are invalid. What it does mean though is you need to respect that faith can waiver when you are placed in the deepest of darkest holes. It is OKAY to doubt your G-d, it is OKAY to question him, it is OKAY to hate him, and it is OKAY to walk away from him for a while.
You see the thing about G-d is that he will always be there. He will never turn his back on you for good. He is one of those annoying parents that will be there behind the door that you slammed waiting for when you are ready to rejoin him. Every doubt that you have, every struggle you have, every curse you scream at him, it just shows that deep down you actually care enough about him to have these feelings. It shows how much trust you once had in him to be this hurt by the fact that you are at your wits end, that you are at your rock bottom, that you have simply met your personal quota of crap that you can take in this lifetime. It means you are human because your child has a diagnosis that literally rips your heart to shreds and you just can’t fathom how a G-d you have put so much faith into, could allow something like this to occur.
To those of you who comment that G-d doesn’t give you more than you can handle….if you were in the position of watching your child suffer literally 24/7, are those words really going to cheer you up? Are these words going to provide you comfort as you watch your child seize for minutes on end? Will you feel special because you can handle watching your child get scarily close to death (or in some cases actually watch them die)? As a parent who can attest to being privy to all but one of the above statements to date, I can tell you that my personal thoughts on this are, “Thank you so much G-d for my ability to handle this”. (<-insert sarcasm). Let me tell you that it is fabulous that G-d finds me strong enough to watch Sonzee have daily seizures. I am grinning ear to ear that I am capable of watching her scream in pain for minutes to hours on end, but be unsure what to do about it because she is unable to communicate with me what is exactly bothering her. It makes me feel like the happiest mom on earth that I am able to watch her struggle to achieve basic milestones such as holding her head up. My most appreciative thoughts are that he thinks so highly of me that I will become part of the elite group who is worthy of being able to handle the absolute worst, that he thinks I am the type of person that will be able to handle the situation of most probably having to bury my child.