Nesting

I have been "nesting" for the past 4 months... collecting little bits of string and fluff to make my nest unique and comfortable for my little family, which is my world. By string and fluff of course Imean vintage embroidered pillowcases, tablecloths, and cute towels with colorful, retro owl designs on them. It's mostly a linen thing, for some reason. Probably because I already have most necessary household items and the only things to improve on are the decorative accoutrements. And no! For cryin' out loud, I am NOT pregnant!

The irony here, for those of you playing along at home, is that I have no nest. Not officially anyway. Katie and I are staying with my former in-laws. I wish there was another name for them, as "ex in-laws" seems disconnected and cold. I suppose "friends", "secondary parents", or "dear cherished wonderful supportive people who owe me nothing and give me more than I could ever dream"........ Maybe there's an acronym for that! So we are invading their space, which they swear they don't mind... And I hope that is always the case!

So it seems odd to me that I scour the second hand stores and craft fairs, etc, to find beautiful little things to make a home cozy, and then wash and fold them, and place them in the top of my closet. At this point, I would have to rely entirely on someone else for us to actually have our own home, though homeownership is my ultimate dream. I know there are programs, and I am working on improving my credit score and whatnot. But all of that is a long long long way away, and I am at the mercy of others for an indeterminate time.

I was thinking about this recent (and longest I've experienced) period of nesting I'm going through. I was thinking about my miscarriages, and the interesting pregnancy I had with Katie. It was actually interesting because it was uneventful, and nothing really came up as a true red flag... all the things that happened could have been coincidental or written off, but the combination of things and the passing of time, makes them seem more significant as pieces of the "Katie puzzle". She was less active in the womb than most babies (as I read a LOT during this time and was often concerned...), in fact she failed a nonstress test 4 days before birth because she didn't react to it! She had a 2 vessel umbilical cord, which often leads to kidney issues and other problems. (we had no problems, it was just weird that it was a 2 vessel cord instead of the customary 3)... Katie was 11 days late, and I am SURE of my dates because I stopped taking my birth control (bad idea), and was pregnant exactly 4 weeks later. Her fontanelle (soft spot) was huge, and covered most of the top of her head when she was born... when I geeked out, her pediatrician said, "Don't worry, it will close before she goes off to college." Funny, even at the time, but didn't make me feel like it was less significant of an oddness about Katie.

There are more things, and we discovered a lot as she grew and even now, things come up every 2 years or so that present new challenges--ie. seizures, bowel issues, etc. But what I find even more significant and puzzling, is that I have had 4 miscarriages since I gave birth to Katie. She is my one and only. 3 of which were with Katie's father, and the 4th with my current boyfriend. I was hoping, shame on me, that the miscarriages would end when I got a new partner, but alas that was not the case.

So with Katie's "issues", I wonder if her birth can be called a "successful" pregnancy as they say in the biz. I am not at all saying that she is not the love of my life, my best friend, and my darling child, but seriously, if there is a genetic component to her symptoms, then what is going on here? None of my failed pregnancies made it past 9 weeks, so I have very little data on what happened. And it didn't help that the first 3 were written off as coincidence/bad luck/whatever, so they weren't careful examined. Even the 4th wasn't really evaluated much, so I really don't know what to think.

I ponder these things sometimes at great lengths. I long for more children; I cherish my friends' children with all my heart and always wish they were mine until they misbehave... (the luxury of being an "auntie"!) I would love to help with foster care, and potentially adopt someday. Maybe that is why I am nesting. I am nearing 30 (I will be 29 this coming January), and the baby urge is intensifying greatly. So is the desire to have a home for my little family, where it can grow into a slightly bigger family...... and maybe even welcome in some children who otherwise wouldn't know the hugs, warm cozy blankets, and super special secret recipe chocolate chip cookies that I have to offer.

**BTW, that is not my house at the top of the page... but a house for sale that I adore, but of course couldn't ever afford!!!**

Apple Festival Fun

Today we went out and about for the Apple Festival going on this month.

Weekends at the Bluff are a crazy, colorful, tasty blend of kids and old folks out to enjoy the local bounty.

We picked some apples at our favorite Mom & Pop orchard...

Miss Katie being silly in the orchard

We started to go to the Grange Hall for a look at all the crafty holiday decorations.... but there was a gaggle of geriatrics in the doorway who couldn't decide if they were coming in or going out, and I decided I didn't have the patience to wait to see. (nothing against their age, I do have issues with people who are oblivious to those around them but since they were elderly I didn't feel it was appropriate to get on their case...

so we just skipped that venue)

Katie got a big kick out of observing the petting zoo!

She loves watching the little pony, pigmy goats, and calf grazing and ignoring the people around them.

I would have liked to take her in, but she's not much for actually touching animals

except on rare days when she pets our kitty....

Beautiful empire apples waiting to be picked...

We were so worn out from the beautiful weather, fun views, and orchard hiking!

Little Miss Doots took a looonnnnng nap when we got home! (so did Mama...shhhh!)

~

We got a ton of apples, fresh plums, squash, and apple cider fresh from the orchard..... What a wonderful day. I love this time of year! Can't wait to break out all of my apple recipes and see what I feel inspired to create!

Unconditional Love... and Inside Jokes

I was thinking about my life with Katie, the other day, as I often do.... As a mother, I know the unconditional love for a child. It is more intense than I ever imagined. And though Katie's situation is sometimes disheartening, I still know for certain that there is nothing that would make me forsake her.

There is absolutely nothing she could ever say or do that would make me love her less. Of course, I also realize the simple flaw in this statement--the fact that she cannot say anything at all, and her motives are always pure because of her disability. Sure we have our "disagreements", she wants something which she can't articulate and I get pinched and pulverized for my ignorance or noncompliance with her desires. But I suppose in the rebellion-aspect, I have little to worry about from her.

But I do love her so intensely that it scares me. I tend toward anxiety as it is, and the uncertainty of Katie's health and medical issues is an easy instigator for my anxiety-prone mind. I worry about her future, her health, the random grand mal seizures which scare the life out of me and make her appear nearly gone to this world for several minutes. I fear that I will somehow fail her, and an accident will occur that I will be unable to forgive myself for. I can't leave her alone for more than a minute as she is nimble enough when she wants to be, and her seizures rob her of her balance.

Most of the time, though, I can bask in her simple joys. We have what I like to call "inside jokes." She will look at me, and I will catch the twinkle in her eye, and we both break out laughing. Eye contact has always been difficult for Katie, for reasons I cannot explain to my own satisfaction. Possibly cortical visual impairment, though I couldn't get this looked into by the "professionals" at her school. They felt her vision was good enough and if CVI was a factor, it was nearly resolved. That's cool. Don't listen to the person who spends all of her waking time with Katie. Rely on your 30 minute "assessment." **meh** But I digress.

The way she looks into my eyes and the giggle fits we get into.... that is the closest to pure joy I have ever been in my life. It literally takes my breath away. Those big blue eyes, that mischievious look..... Nothin' better. So I realize I have it easy when I think hard about it. Katie will not disown me, nor I her. There won't be battles over clothing or slamming doors and hateful words.... But it is a bittersweet victory as there won't be "I love you, Mom" or "Thank you for helping me. You always know how to make me feel better." I just have to see that gleam in her eye and know that she means it.

Compassion

I wonder how many lives will be touched by Katie. We are swarmed when I pick her up from school by sweet little girls who want to say "hi" to Katie. The children in our complex are fascinated by Katie. Shayne's son is her favorite "buddy" and is so sweet and tender with her.

People whose lives have been touched by someone with a disability show themselves to be so much more thoughtful, compassionate, and kind than those whose lives are unhindered by the imperfection of life. I believe that people like Katie are some of the most enlightened souls returning to earth in a challenging body to teach us more than we could ever imagine.

I worry more about people who do not get the opportunity to know and love someone with a disability. Things are different today than they were even when I was a child. Mainstreaming in schools and inclusion are much more practiced today than ever before. When I was in elementary school, the special needs children were in a separate wing and I rarely if ever saw any of them. They were a mystery. Even scary or intimidating in their differentness.

But now we have children who visit Katie and read to her, local high school kids who come and spend time with her class... So many more shows address children about people who are differently abled. I find it relatively easy to talk to the other kids about Katie's differences. Maybe even easier than with adults. They have many questions, but the answers can be simpler than when speaking with adults. As one little neighbor girl so easily summed it up, "Some people talk and some people don't." 'Nuf said.

I hope that Katie continues to be surrounded by loving, compassionate people who get to know her. Who will look past the indelicacies of life with a disability and will see the beauty and simplicity within. I hope that Shayne's son will grow up to be a gentle and caring man because of his time with Katie.

I wish everyone could have that chance.

Amazing...

Katers, Katie Bugs, Buggy Toots, Buggy Boots, Punkin Poots, Missy Pea Pants, Toots,

Moots, Moodies, Bossy Boots, Punkin Head, Peasy, Matoots, Skwiddo, Boogas,

Buggaboos, Katertoots, Lovebug, Sweetpea, Moochie, Muchas Muchas, Blue Eyes,

Gorgeous, Lalas, Smoochie, Nanoots, Noots, Doots, My Baby, Scooter, Mugwump, Goobahs, Scubah Doobah, Lazy Daisy, Hoobie Scoobie, Goofy Toots, Lovie Buggie, Honey Bear....

Sometimes I think it's amazing that Katie knows her name... I come from a family who gives everyone and everything nicknames. Silly and cute, nonsensical... I must have a million variations. Still she knows me, and knows my voice. When I walk into a room and start to speak, she turns to me and smiles. She completes me.

Happy Birthday Sweetest Girl!!

8 years ago today, on the 2nd day of spring.... a darling little angel girl was born! Katie's 8th birthday is today. I can't believe it! We celebrated by attending a friend's daughter's 8th birthday and she had pony rides!!! Where does the time go?

Ridin' Annie the pony!!

Walking up to check out the ponies!

Check me out!

Best birthday present ever: A huge bouquet of balloooooooons!

Hope... and disappointment

A few months ago, Katie had a microarray and urinalysis done to look for genetic abnormalities. She has hallmark features of a genetic syndrome, like some of her (adorable) facial characteristics. So the microarray was a new hope as it would look for many different issues rather than only a narrow range of syndromes. It has been several years since she has had any genetic testing done, so I was hopeful that a new hospital, new geneticist, and new technology would give us a road map for Katie.

No luck. Everything came back spotlessly "normal". Sometimes people say to me, "Oh, that's good!" I can't help but cringe. It is most definitely NOT good. There is clearly something hindering Katie's development, and it would be extremely helpful to know what that something is. I realize, as I have for many years now, that it IS good that she doesn't have an obvious, debilitating condition. I am grateful for her overall good health.

But it would be so nice to know what to look out for and to know what challenges might be waiting down the road for us so that we can be prepared and proactive. I know that a diagnosis would not reduce her need for physical, occupational, and speech therapy. I know it won't magically make her "better". I just find it so hard not to have a name for the syndrome that has made life difficult for my daughter and has changed motherhood as I anticipated it.

Sometimes it may seem selfish that I wish to have a diagnosis to "blame" for Katie's disability. But I would much rather look at a syndrome with frustration than to have someone say "Well, that's just Katie". It isn't Katie. It is what has trapped her in this little body and stripped her of her ability to speak, run, and do the other things that life offers. I see the beauty in her little face and fantastic personality. I see how she shows love and joy so easily. But I also see her struggle and get frustrated at this world that is sometimes so hard to understand. Hopefully someday we will have a diagnosis for that.

Controlled chaos...

I am embarking on a new journey... Housekeeping! For many years I would say that the house "kept" me, and not the other way around. I was not born blessed as a clean freak, and have a certain sentimental magnetism toward clutter. Even as a child I felt guilty if my toys were not played with equally, and felt even worse getting rid of them. (I cried like a baby watching Toy Story II when the cowgirl doll sings about "When she loved me"... okay may have been a little stressed and/or exhausted at that point too...) So I have decided enough is enough. The stress of living in a small apartment with all of this stuff is too much to be worth keeping things. Now don't fret, I won't end up on an episode of "Hoarders" anytime soon.... but when the bathroom counter is so overrun by barely used cosmetics that it can only dream of being cleaned, it's time to de-clutter!

I started by ordering two books from amazon. One that is "tried and true"--my mom used the original version when I was a kid! (see this thing is genetic, I tell ya) The New Messies Manual: The Procrastinator's Guide to Good Housekeeping... And another that appealed to me as a former working mom who had no idea how to become a stay at home mama "Domestically Challenged: A Working Mom's Survival Guide to Becoming A Stay At Home Mom . The second arrived first, and after reading about halfway through it, I stopped. I had just gotten to the good stuff, where she discusses actual strategy... but the first half of the book seemed to have one message: Get over it, you are not going to become a domestic diva anytime this millennium. Get used to being in your pjs at 2pm with a filthy house and screaming banshee children. Tell your husband to pick up the slack. Thankfully about the time I stopped reading this one, the first book arrived to save the day.

I absolutely love the New Messie's Manual, and even though I am extremely resistant to change, I feel a definite ray of hope in her writing. The classic "Messie" she describes fits me to a T. I'm sitting here wondering why I'm admitting this... Hmm.... Well maybe to find a kindred soul or to let other closet "messies" know they are not alone nor are they defective!

I look at my home and I see things I have never seen before. And I don't just mean the floor! I see potential... Shayne says it's like the mess blob monster that had previously consumed our apartment is receding and leaving order and cleanliness behind it. Others may still see controlled chaos at this point, and I'm okay with that. I'm not inviting any of you in. Ha! But it is so relaxing to have a clean sink, empty of dishes to start the day, clean clothes without hunting, and enjoying a seat on the couch! I realize now that if I do a little every day, then cleaning for company or what have you is not such a herculean task! I have 3 boxes to take to Goodwill, which I normally save stuff for "people" that the ideal giftee never gets found and the stuff stays..... so this is a good change for me.

I have never felt so relieved by getting rid of stuff and having a structured cleaning schedule. It really doesn't take nearly as long as I previously told myself... and I really love the change! Change is gooooood.

An Open Letter to My Love

Dear Shayne,

I know this has been an interesting transition for you to say the least. I know I let you down sometimes, like today when I drank your Cherry Coke Zero... the very same one I bought for you at Walgreen's last night. I couldn't help myself. It has been a rough day, and I needed its fizzy comfort. I hope you did notice though that the house was picked up (not sparkling by any means), the dishes were done, Katie's massive toy collection picked up, and dinner was hot and ready when you got home. I also did some tidying in our room, and put the "new" nightstand I got from Goodwill a couple of days ago and have been hiding in my car by your side of the bed. It was a great bargain and it looks so nice there. I also hung up and rearranged some pictures in our room. I think it looks better than ever.

I am amazed that I got as much done as I did... I had Miss Crankypants to entertain all day as she hasn't been feeling well. My mouth feels like it's been through a meat tenderizer from being probed by frustrated little fingers who have no other means to communicate discomfort. I have had my hair pulled, been bitten, and just feel like a punching bag from the fun today. Little Miss did NOT take a nap today though it would have been much needed respite for the both of us. She is now in her bed, ready to crash but fighting it all the way... Running her Thomas the Train across the wall, no doubt irritating the hell out of the neighbors, and I don't have the energy to care. I have not showered in 2 days as I have been on high alert for vomiting since she threw up in her sleep on Thursday. You and I both know how little warning comes before one of those spells. I want to punch her GI doc in the face for being so apathetic about it.

My dearest Shayne... thank you for supporting us and supporting me, emotionally through all of this. I cannot expect you to be grateful to me for taking care of a child that doesn't belong to you. But she is my beloved and I appreciate your understanding and grace. Grace for the fact that this little person doesn't make life easy for us. The couch is now virtually uninhabitable for all but the sturdiest of constitutions thanks to her leaky pullups.... I really do plan on figuring out how to fix that problem in the near future. Thank you for loving me even when the woman you come home to is an attention-starved, overstimulated noodlehead who desperately needs some adult conversation, alone-time, and of course serious hygiene help.

I am grateful for you and to you for all that you do. You are a blessing and a wonderful man.
I love you.

Why I'm a bad blogger

I have figured out why I am so bad at blogging/journaling/etc... pretty much anything that takes a daily reflection... Usually I do my thinking as I lay down for much needed rest or while I'm driving. Neither situation lends itself well to blogging! When I am in bed my thoughts seem so eloquent and well organized, but there is nothing anyone could do short of a fire or Katie emergency that would pry me from the warmth of my covers... I can jot down ideas in the car while at a stoplight, but I really think I do my best thinking far from any record keeping materials! (delusional? maybe...)

But I was thinking about small blessings the other day, and what a bizarre blessing Katie's absence seizures can be. Sometimes she is upset or insisting on something that she simply can't have and she has a seizure. This gives me time to adjust her view when she "comes back" to entice her to something different. Sneaky? Definitely. Evil? Only slightly. Sometimes I need a break from the tantrum too, and her seizures give me time to take a deep breath, hold her, and kiss her sweet face until she resumes the "conversation". Those conversations don't involve words but hair pulling, pinching, and biting if an ample body part is available.

These things don't happen too often or with too much fervor, but when they do, it reminds me of her disability and frustrates me that she cannot tell me what she wants. Sometimes I know what she wants but there seems to be little reasoning with her. Diversion works fairly well, but I worry that it only fixes the situation momentarily and does nothing to teach her how to be patient or any other skills she will need in life.

That being said, we are going to meet with a child psychologist who may give more insight into her behaviors (both self injurious and otherwise). A nurse suggested soft restraints to which I almost hung up the phone on her, but nonetheless I want to make progress in teaching Katie to understand this world and interact in a meaningful way.