We both have a four day weekend. Roger had off from school Friday and I have off Tuesday (because of job sharing, my school actually does return Tuesday).
This weekend has been spent with us trying to regain control of the house and yard. A handle on life again. I feel like we have been living in crisis mode. I am not trying to complain when I write this and oftentimes I stop myself from writing some things because I don't want pity or anyone to read into the situation incorrectly. And I think I might sound pathetic. However, if I am to keep true with helping a future mom going through this then dear family and friends you will have to deal with my writing about things that might make you feel less comfortable.
Crisis mode. I remember having trouble this past summer. My brain felt unfocused and interrupted, if that makes any sense.
I always had a baby on my hip, a three year-old yacking my ear off, as I prepared to send one son off to Nicaragua and one to be a freshman at a university 4 hours away (takes me 5). Poor Kath didn't stand a chance. She was quiet. I thought she was just watching and sponging eveything in. I considered her quiet and contemplative like her father. I figured she didn't crawl or reach for anything because everything was provided for her and she was marching to her own drum. I struggled just to get anything done. Housework, cooking, yardwork and then when school began schoowork. She wouldn't let me really put her down, although when I did, she wouldn't move. She wouldn't reach out for anything around. Everyone grows differently, I thought.
Then she pushed away from breastfeeding. She seemed to be becoming more introverted and it seemed as though she regressed. She no longer made certain sounds, there wasn't any progress with me working on the normal activities with her.
Chris was in a foreign country. I spoke to him every night. Nick was absorbed in a different world and very busy; was I doing enough for him, being supportive? Alex was a whirlwind of growth and activity. Roger was overwhelemd with school. Kath was still quiet and immobile. I tried to juggle and kept dropping things.
Then the whirlwind of a ped appointment, an early intervention evaluation, Christmas, visiting Nicaragua myself, and all the busy day to day stuff. And what to make for dinner? The regular stuff doesn't go away. Did I mention the Kath yell/scream? She has this piercing scream that forces you to run before you even know you are running.
As the mom, I felt I was sinking beneath the weight of trying to keep the house up, the activities going, all of the kids going, Roger, my career, bills and so on. And my sanity.
Then in January, Kath began physical therapy. When she began, she wouldn't move that hand well, reach for a toy or try to get to a toy. Slowly she began to move and reach and grab and play. She actually started to play! She didn't just sit there. She played with toys, moved them around. Wow, how did I miss that from occuring? Ok, maybe she did play before, but this was different. She was engaged and working muscles.
February the other shoe dropped, as the saying goes. The neurologist said 'autism' or 'cp.' I knew next to nothing about either. I actually though autism was a better diagnosis. MRI and wham 'Cerebral Palsy brought on by a stroke.' A STROKE? Are you kidding me? If you could have peered inside my body I am sure there were bruises. They just didn't register on my skin, it was my heart bleeding out.
I distinctly remember, during what could have been my second trimester, substituting for another teacher in a Life Skills class and feeling nauseaus. I thought, "How would I deal with this?" I felt I wasn't really mentally ready for child number four and I definately could not handle a child with so many needs.
But there I was. Here I am. As I said before, Chris looked it up on wickipedia. He emailed me a list of accomplished people who had this. Ok, great. She can live a life outside. But then how do we get to that point?
I went into research and mourn mode. To family and friends this sounds horrible. Why would you mourn someone who is alive and laughing in your arms? Because my nice little idea of Life was over. I wasn't ready for number 4, but number 4 wasn't going to stay quietly on the side. She was actually going to be the focus. No sidelines. (This sounds horrible. NONE of my children are sidelines--I mean I couldn't treat her evenly and equally, she obviously would need more and she would not learn things just by watching . . . .This is something I don't think anyone who doesn't have a special needs child can understand.)
I mourned the idea of what my daughter would do with her space in this world. I mourned for her and Alex being best buddies and taking me shopping and rolling their eyes at my clothing choices. I mourned that she wouldn't be a wife and mother. I mourned that others wouldn't see her heart, but only her tight fist and whatever else she would have 'wrong.' (Since these orginal thoughts I see things differently, she will be amazing and I expect grandkids in 30 years!)
I couldn't talk to anyone about this. Roger did his best to swallow everything and the first weekend when I hermit-tized, he took the phone calls and dealt with the outside world. I cocooned and tried to fix it, maybe they were wrong . . . .
But the more I researched, the more I knew the diagnosis was right. Yes, she has what is considered a minor case. Some people who don't know, can't 'see' it. They think she is quiet and since she is petite they just think she is 'not there yet.' I get the idea many people think I am exaggerating. Her brain is affected, we can't see that. Most things that are a reflex for others must be learned by Kath. And that learning is hard, hard, hard work.
Once again, I am not writing this to make anyone feel badly or gather pity. I am writing this for me and anyone who might feel like they are on the oustide looking in.
All of my focus is as a mom. Research, implement. Doing my own PT, OT and Speech. Everything is around her schedule. And Alex fits in nicely and I make sure she gets time and attention. I make sure I am in constant contact with the boys. I try to be a support for Roger. But sometimes I feel adrift and alone. Except when I read the list-serve or I talk to a mom who has been there. Then I feel a connection and bond with other mothers. They undestand the weariness of always being 'on.'
The doctor appointments. Limited time with a professional to ask the questions that poke up in the middle of the night. Therapies 4 days a week (with OT and hippotherapy starting soon to add to it). Keeping it all straight.
And trying to keep everyone else straight. And bills. And cleaning. And shopping. And anything else that pops up--like Rogers' accident, my grandfather in the hospital, my father sick, a cesspool that gave up, oh and a career.
This weekend was not spent bar-b-queing with friends for us. We spent it trying to catch up. Living in crisis means you don't clean, you shuffle stuff so you have room on the couch to sit. You wash clothes because you don't have clean underwear. Then you pile it instead of putting it away. You buy easy to cook meals that may not be the healthiest, but everyone has a full tummy (then you feel guilt because--what if glutton is stopping Kath from some brain activity?).
Living in crisis is putting out fires. Not planning. And no one should stay there for an extended period of time. It is too hard to maintain and crazy.
But how to get out of it?
I don't know. I am amazed because we have had help from sources I didn't expect. My neighbor who has stepped in as a surrogate mom, grandma (not to make her feel old, but she makes Alex feel so secure and treasured) and best friend. As well as a few other things. When I was hanging on by a fingernail, she called, emailed and came over. And listened. And asked questions. And listened. Thank you Maddy for being such an angel.
And the girls' nanny (babysitter makes her sound like she is 15 and she does so much more!) is terrific too. She has taken on Kath's diagnosis with incredible patience and strength. She could easily have said--I can't do this, I have enough on my plate (and she does), but she is right there besides me each week taking care of the therapies I miss while I am at work and showing me what works for her. Thank you Robin.
I am blessed with angels who have held me when I cried; laughed and clapped when things are excellent; and have listened when I just needed to vent. And other angels like Ellen at school who ask me every day, how are you? Thank you Ellen.
And Janine and Karen help by giving Alex special time and having us over for a wonderful brunch where there were no expectations and I could drink a mamosa!
Our families are so very far away so we don't get any 'breaks' from grandparents to recharge our batteries or even just have a conversation uninterrupted. These angels help me breath in their actions of kindness.
So this is very long. Yes. Somedays are like that. And we are having a great weekend. Mowing. Shampooing rugs. Scrubbing tubs and toilets. Dusting. Paying bills. Writing. Reading. Playing.
It is almost like we are truly coming out of crisis mode and starting to get back to regular old life. Yes, a life that is very different from the life we had a year ago and imagined we would have at this point. But hey, I cleaned a toilet, life is good.