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.

Feeling Inadequate

I have been feeling a little down lately. Kind of like an inadequate piece of crap, really. Not by the influence of anyone outside of myself but by my own admonishments. I never have the energy I feel that I need to get through a productive day. I push myself when people are around, but I struggle so much with fatigue and lack of motivation. I don't know that I'm "saving it up" like I sometimes hope, because when I *really* need it, it is there.... But where is it the rest of the time?

I think we're getting a cold. (we meaning my little household--myself, Katie, and my boyfriend)... She is not nearly as lethargic as I am. I feel like I could sleep for 24 hours. Sadly, I probably could if I had the chance.... The dishes are piling up in the sink, the laundry is awaiting transport from the washer to the dryer. And I just can't care. Katie has been happy and cuddly for the most part... No worse for the wear as they say. But we could both use a bath!

I stumbled across Katherine Wolf's story today, thanks to Nienie's blog.... All I can say is wow. Both of these women are close in age to me, yet I feel like they are decades wiser. Something happens to you, I think, when your life is forcibly simplified like it was for these two women. Survival was first and foremost, and family a close second. I still get distracted by friends, projects, appearances, material things.... etc. I do not of course wish for a life threatening experience, but I do wish I could channel the focus and simplicity that results from these events.

Sometimes with Katie's challenges I chastise myself for desiring a more "normal" life. To pretend like my daughter doesn't struggle to communicate or require my constant attention to survive. Any fantasy I have always has to wake up to the reality that this is not my life. What Katie and I face is our life. And it is beautiful. It isn't as hard as it could be. I really do wish I wasn't so tired all the time. I wish I was a better housekeeper. I wish I made all the phone calls I need to make, cleaned out my car, and dealt with sorting the laundry before it became a pile on the floor. But grace and God allow me the truth that Katie is healthy, happy, and blissfully unaware of her mother's shortcomings! And her happiness is truly all that matters. Because when baby's happy, Mama's happy!


**I love what Katherine says in her journal about trials and struggles.... and about "Using the Good Stuff"--a philosophy I have always subscribed to!

Suffering is Universal

I consider my greatest fault/character flaw/sin to be my extreme naiveté; however, I am not naïve to the fact that everyone around me is suffering through something right now. I am not the only one going through a lot. While my situation is extreme, we all face difficult trials every day. Clearly, you don’t have to be experiencing a major medical issue to be able to understand suffering. There are hard and sad things in this world that are awful and painful. There are children who are abused; there is homelessness and people who go to bed hungry. There are unmet expectations and broken relationships. People have affairs. Parents divorce. There is disease, and there are freak accidents. Women miscarry, and couples can’t get pregnant. People die. Life is hard, no matter who you are. Because of this, we need to give each other slack (because we often never know what someone else is going through deep inside), spread love over everyone in our lives, and find hope in the Lord’s promise that our suffering is never in vain.

Use the Good Stuff

Patty Roper, Joanna Martin, Brenda See and their daughters threw me a lovely “Paper and Linen” Shower in Montgomery (it was the first of 13 parties before I got married –I’m not kidding). As the hostess gift, they gave me a gorgeous set of monogrammed sheets. I was saving them to use when we had our own home. Had I died last April, I would have NEVER used those sheets. They would have been saved for 4 years for nothing! I think my situation points to the fact that you should use the good stuff and do all those things you have always wanted to do. Who cares if the baby might stain it or something gets broken. It’s definitely better to find enjoyment in special things now then feeling regretful for having those things sit, uselessly in a closet, never being used and enjoyed. We are not promised tomorrow, and we need to live like it is our last today and celebrate the gift of each day.

Goals

It is hard as a parent of a child with special needs to figure out which goals are appropriate. To realize that your child's potential may be limited is extremely painful. To realize that the burden of their potential is directly on you can be at times catalyzing and paralyzing. I have found that setting goals for myself and what behavior I would like to have is much more fulfilling than setting goals for Katie that she may never reach.

However, I still hope that someday she will be able to communicate more with me, with words or pictures, whatever form it may be. I hope that she will continue to progress, as slow as it has been, toward some level of independence.

But for now, and on days when I do not wish to be a therapist but a mom... My goal is simply for her happiness. For each day to be as fulfilling and content for her as possible. I hope to enrich her life by exposing her to new experiences and places.... To do whatever it is that makes her happy, in the moment. And worry about tomorrow, well, tomorrow.