Monday, October 31, 2011

The Art of Being Ok. . . No matter what.

Until you've lived the life of a parent with a child who as a severe mood disorder, you'll never know what it's like to truly be a parent without answers. I used to think, with the medical issues, that the most frustrating part of parenting was being unable to find an answer for any given condition, or that the doctors weren't digging deep enough, or that the medical community was not working in a cohesive manner. Oh off course, these issues continue to be a major sources of frustration. . . but for me, the most difficult and upsetting aspect of parenting that I have had to yet contend with is. . . accepting that my daughter will always be unhappy.
I face the issue of medical mysteries with many of the kids. We can't find seizure control for Joshua despite even a desperate attempt at a major, and thus far unsuccessful surgery. I can't get Trayvon transplanted any faster and, in fact, the outcome may be riddled with more issues than we can even imagine. I can't find a treatment for the miserable side effects of Nettie's meds that make her despise her own body to such an extent she has walked herself into severe pain and caused hip damage. I can't make Sergio's GI tract work thus making him dependent for a central line to live yet, the very lines are what will take his life one day. No, I have no answers for any of them. I have looked, researched, gone to other hospitals, prayed, begged and pleaded with God to just give me a clue to any ONE of these problems. To no avail. But, as much as it pains me that I have no answer, the actual children themselves are very happy kids!! They are ok with it. Nettie would love a new body, BUT she is happy to go out each day and socialize, live life and work towards the day she can live independently. Trayvon wants his transplant to be behind him and hates wearing oxygen and having an IV attached to him 24/7, BUT, he's happy and goes to school and has friends and lives life without sitting home in utter panic over the future. Joshua can't be left alone for even a moment, for you never know when he's going to get thrown straight backwards to the ground from a vicious explosion of electrical currents ripping through his brain. He wears hearing aids, an ugly ass helmet and can't even go to the bathroom unsupervised, BUT, he's remarkably happy. He loves being home, he loves his dad, giving hugs and telling jokes. He thinks farts are the funniest thing in the world and will laugh until he cries when he pulls a good prank over on someone in the house. He's happy. And Sergio. Sergio knows nothing other than what he knows now. He doesn't remember life before TPN. He's never had food so he doesn't miss it. He doesn't know that the lines he has hanging from his body are not part of everyone's body. He doesn't care. He's happy. He kicks a ball and laughs, he plays with the Ipad and laughs hysterically at my voice, he finds water and he's in complete heaven. They don't care that I have not managed to solve the biggest probelms in their lives, they don't even necessarily see them as problems. And then there's Cody. The amazing little/big brother to them all. He gets each and every one. He is compassionate and thoughtful, he is happy. His teacher reports that they have witnessed him teaching empathy to other children in his class. How awesome is that? I do wonder if one day he will look back at his life and family and think to himself. . . What in the world were mom and dad thinking! But, he's happy. Then there is Marriela. . . Marriela is not happy. Oh, she has happy moments. She can laugh and melt your heart. Her smile is amazing and she flashes it enough that people can see her beauty. BUT, beneath those intermittent moments of joy, there is a never ending undercurrent of anger, frustration and irritability. It comes out many times a day, tempered by our quick and interventions and rapid appeasment of what has triggered her most recent outburst. She is calmed by food, music and movies. But, even these are the source of break downs multiple times a day. . . I can't feed her 24/7 despite the meds making her feel hungery ALL the time, I can't give her unlimited access to the tv, it's a house of 8 and you can only watch Look Who's Talking so many times in a day. I can't give her solo ownership of the Ipad to listen to music, there are other kids who need it just as much for entertainment (like Sergio). But, even if I were to do all of the above, she'd still become unhappy. . . it's the curse of her brain. She was born with a brain that is hardwired to be irritated and frustrated with minimal ability to rationalize or reason why or what she's feeling. It's beyond heartbreaking. We've pumped so many drugs into her small, developing body that I'm actually embarrassed to say how many. To no avail. She has never responded to anything for more than a few days or she has had the opposite reaction and life became excruciatingly harder. She cycles rapidly all day long, 1 minute she over excited, the next 5 she's tantruming on the floor, the next minute she's hugging you followed by rapid transition to the need to throw her toys across the room because she deemed them to hard to work with. My brain is tired at the end of the day trying to keep her on an even keel (and failing miserably daily). So, the other day, the painful and terrifying realization that this is Marriela. This may just be the best it gets for her. The ability to learn will be forever elusive due to an attention span that is, at it's very best, fleeting. The ability to live independently is impossisble, she has no sense of danger. She would happily wander off with any Tom, Dick or Harry that promised her a hot fudge sundae. The ability to have friends is minimal, as her social skills are so splintered and erractic, few kids will even try. Her extreme anxieties to so many things keep her a prisoner of her own mind and there she is trapped in a frustrated, angry world. Yes, this is a very bitter pill to swallow. I can't fix this and don't believe anyone else can either. . . BUT, the worse is that she is not happy. So for that, I will pray. Peace and happiness for my beautiful baby girl.
So, as a parent the art of being ok, no matter what is a skill that I have been sharping and practicing for years now. But, I don't have to be happy about it.