...a perfect mother. I try to be and always seem to fail. I am not the perfect wife...I gave up even trying there. I am not the perfect friend...cause we all know my outloud voice gets the better of me sometimes.
But I am what I am and I like me that way. I have happy, well-adjusted, well behaved, polite, smart kids. They don't always remember to say please and thank you, they don't put Mr. or Mrs. before everyone's name, but they don't constantly embarrass me in public. I can take them to a nice restaurant and they are going to behave...maybe not like gentlemen, let's be realistic..there are two of them and they are 7 and 8! I can take them anywhere and as long as I do MY job as their mom and properly plan for boredom busters if need be before we get there, they can behave. They don't get in trouble at school. They go, they learn, they come home and get in trouble. LoL I can take them anywhere and for the most part, they are cool.
We don't have to have a big house in the suburbs with every toy known to man. We like our little cottage on the beach. It forces us to spend time together. We like not having cable TV. It forces the kids to actually go outside and play and use their imaginations...yes my kids actually have imaginations! (we had a long discussion about it..daily..and we have CHOSEN to do this)
Neil and I aren't conventional parents. We aren't conventional people. When we found out we were having Andrew, we thought long and hard about HOW we were going to be parents. We didn't want to be those parents who put their entire lives on hold just because we had a child. We wanted to figure out how to continue to live our lives and just work him in. It sounds selfish, I know. And we have made many many countless decisions to give up "stuff" because of the kids...so I guess I should say that we wanted him (and Lukas) to be a PART of our lifeSTYLE and not be our complete lifestyle. I didn't want to be one of those mom's that lost their identity and just became the mom. I struggle with it daily...mainly because I am a stay-at-home mom (and I thank Neil daily for all that he does so that I can continue to be a stay-at-homer) but I learned early on that you have to retain your identity and be the mom. It's possible if you work at it.
I guess all of this is coming to light because we got some bad news at the doctor this week. As many of you know, part of the reason that we chose for me to be a stay-at-home mom is because of Lukas and his hyperekplexia. In the beginning, when he had all of his therapies and myriad of doctors appointments, it just wasnt something we could do as parents, we felt that one of us needed to be with him for that. We KNOW with all of our heart that Lukas wouldn't be functioning as well as he is now, if I had NOT stayed home with him. That's just plain and simple fact.
Lukas was diagnosed at 6 months old with hyperekplexia/stiff baby syndrome/startle disease. (He has the fainting goat syndrome basically) We were lucky that on the spectrum of the syndrome, his startle levels were low, but his muscle tone was a different story. He struggled to do things like sit up and roll over. His little muscles were so stiff!! Not to mention the lung problems that came along with being 6 weeks early and being born with under-developed lungs. But through therapy, both physical and speech, he overcame all of these things. They told us that he might never learn to walk without assistance and now he plays soccer and rides skateboards and bicycles. They didn't know if he would ever be able to really speak and now you can't shut him up. He still struggles daily. He's gait is a lil' funny, he struggles to run, he gets tired easily, he has trouble with buttons and tying his shoes and anything that requires very fine motor skills. He talks a lil funny and he can't chew up tough stuff like meat. But he doesn't know that he is "struggling". Lukas stays sick. He always has a runny nose and a cough....winter is hard on him. That's part of our decision to come back to Florida. It's milder and he doesn't have it as bad. And then there was the sleep apnea. He snored like an old man, he woke up trying to catch his breath a million times a night it seemed. We did a sleep study (and that sucked) and they thought it was all his tonsils and adnoids. We FINALLY got him healthy enough last year to remove them. It didn't work...but the doctor wanted to wait to see if once he totally recovered, the snoring and apnea would stop. The way he explained it Monday was that what he BELIEVES is happening is that the muscles that open and close his airway are stiff and when Lukas is asleep and totally relaxed, those muscles are collapsing partially which causes the snoring or totally which causes the apnea. He wants another series of tests done to see exactly what is going on. We'll start those in March or April.
We thought we were out of the woods with this one. Taking his tonsils was supposed to be the end of it. This was the first year that I didn't go in and explain to his teacher and the guidance counselor and the principal and anyone else would listen about his disease. We were going to be a "normal" kid this year. I guess it makes sense and I wish we had found it sooner and all of those other things that I am supposed to think and say...but this could change his life forever. How do you have sleepovers with a CPAP machine. How do you go tent camping? His college roommate is gonna LOVE him. I don't want his life to be complicated by this...
OK I have whined enough....this unconventional momma is going to go do something conventional....like the breakfast dishes. Need to start packing for camp...but dunno what one takes on an overnight campout in a tent when you don't own sleeping bags.
