My friend Jeanne of ChronicHealing.com has recently had a guest blogger, Stacy, writing on the priorities of life when it comes to illness. In this post Stacy writes of her family having to adjust to the reality of life with a chronically ill family member. Stacy's post really got me thinking of my own parenting when it comes to my son.
J. has never known a completely well me. My symptoms of endo had long pre-dated his arrival into this world, and fully complicated things after his arrival. He has seen the interior of doctors' offices way too much for any one person already in his young life. It's sad to admit that this has become his "normal".
I was diagnosed with stage 1A endometrial cancer 3 months after my precious miracle's arrival. While it was in its earliest stages, one can't help but think about the what-ifs that go along with this type of diagnosis, and those first days before I adjusted to this "new normal" were quite wrapped up in all of these thoughts. Realistically, I knew that there was very little chance of me becoming terminal, at least at this point, but these thoughts are what your brain seems to automatically jump to when you receive such a huge diagnosis. Not only did I have to consider my treatment choices along the lines of what I was willing to pursue (hysterectomy vs. no hysterectomy, etc), but now in making any decisions I had to also think of this completely dependent person. Every treatment decision and follow-up doctor's visit were always opportunities to second-guess whether what I was doing was "right" in a world where there are few "right" answers. J. has now been through 2 laparoscopic surgeries and countless D&Cs with me. And that's just the surgeries. He's seen me vomiting to the point where I couldn't leave the floor of the bathroom, witnessed me writhing in extreme pain and not able to comprehend why, and just generally struggling with whatever each new days throws my way. Even worse, lately he has witnessed me faint and became terrified I had died. He didn't tell me that he thought this, but told my parents later on, which to hear drove a stake through my heart. It's painful to think about the natural fears of a child being multiplied to a great degree in such a manner.
Throughout all of this, I have always tried my hardest to give J a "normal" childhood existence. I am unable to run around and be physically active with him, which is a void that my dad and now B. try to fill. I am unable to go camping with him as sleeping on an air mattress might mean days of pain for me afterwards. Again, I've entrusted my father into taking him camping.
I have a firm belief that it is the overall experiences a child has that goes into making them who they are. A child needs to experience unconditional love, respect and genuine emptahy in order to become an emotionally "stable" individual. These are gifts that we can give no matter our abilities. In fact, when you look at the topic of basic human needs; food, shelter, clothing, genuine love - these are things that we can give our children no matter how we are feeling.
J and I have been to countless drop-in playparks together, we've frequented the zoo (when I was able to) and we used to really enjoying going to the indoor amusement park together. We've seen Sesame Street Live, the Backyardigans and have gone to the movies on "dates" before. And the reaction that I get from taking him to these big things, pales in comparison to the reaction I get to playing something like Sorry, or Bingo on our living room table. Just a trip to Webkinz on the computer, or viewing the live webcams of animals on the computer can bring about "you're the best mommy in the world" phrases.
J has learned some lessons from my experiences that he will find of great value when he gets older. He has learned patience, that sometimes you must find ways to entertain yourself when the doctor is running 2.5 hours behind schedule. That sometimes you must wait up to 6 months or longer to get a special appointment. He has learned patience with other people, that sometimes we can't always meet our demands right away.
He has learned respect for other people's abilities of all types. He understands that "mommy can't do this" but he never criticizes. He is aware of what he can and cannot do because of his illness (epilepsy). He thinks nothing of it to see a person in a wheelchair or with an IV pole. To him, this is the "normal" and how we get better.
I've attempted to keep some level of normal in his life, and yet I still feel the guilt at times. I see other parents and how they are with their children, and I long to be that mom who is able to push their child for what seems like an eternity on the swing at the park. I long to be that mom who totes everything around in a back-pack and whips out things for an impromptu picnic at the park. I long that my children didn't have to know how to call 9-1-1, even if it is a vital skill. And yet, I wouldn't give up the opportunity for life lessons that my illnesses uniquely provide.
When asked "how do you deal with being in constant pain and having children?" or "How can you look after children when your own health is precarious?" I look deep for the answer but the answer is always the same "I just do". I do what needs to be done to make sure that their needs are met, everything beyond that is just icing on the cake.