Well, it's been a good long while again...Sorry. Let's see, what's been going on in our neck of the woods. I have begun to set up my midwifery practice. Always thought I would take some time off and then start but, the Lord has been gracious and sent me a few clients so, I am starting to work sooner that I thought. It's been a fairly easy transition to go from being someone's employee to being my own boss. It's been nice to make my own schedule and to make my own charts. I love that I am able to do prenatals at my house or at the clients house! However, I do miss the closeness of having another midwife sister around often. Maybe I should start a midwifery lunch meeting once a month! Then I could get my fix...lol. The girls are doing well. Gracie finished kindergarten and will start first grade after I test her and make sure she is proficient in all the Kindergarten subjects. She is reading the BOB books well and I would like to see her start on some more advanced books but, I don't want to stress her out. Anyone have any reccomendations? Addie is doing so well with walking! I am so proud of her! She is taking the initiative to step from one couch to the other now without us pushing her to walk. If she can get this balance thing figured out, I think she might be walking sooner rather than later. I finally got my birkies for christmas from Chris! What an awesome guy! I feel like a REAL midwife now. Well, think I will go practice some suturing in case I need to do it in the near future.

Just a thought,

Any chance I could wake up and see this tomorrow? Life has been just a little too "real" lately.

I Earned It!

It's amazing that after almost 5 years I can finally call myself a midwife! I have spent years trying to explain to people what an apprentice midwife is! It's really frustrating because they don't usually understand that you do all the same things a a regular midwife and you don't get paid for it. Here I am though and now I can buy myself the two treats I promised myself I would get if I ever graduated. 1. A shirt like this (see picture on right) It feels good to have earned the right to wear it! 2. A pair of REAL Birkenstocks. If omly my preceptor hadn't bought the ones I have been eying for 4 years just about a month ago! I may still buy them anyway. It's not like we are ever around each other now anyway. But, just for fun, here is a pic. It is so hard to see these two things and know that if I want them, They are MINE! (sorry they probably don't mean anything to ya'll just, the promise of these kept me going when I had 7 births in 6 days last year!) I am done!!!! I am a Certified Professional Midwife!

Addie's Trip to Vanderbilt

Addie made her yearly pilgrimage to Vanderbilt for the Angelman Natural History Study this month. Boy was that fun! NOT! But we did get lots of interesting info and the news that Addie is doing remarkably well. Which we of course love to hear. Anyway, enjoy the pics!

Placing the EEG wires.
Addie's hair and the aftermath of the EEG goo.







The Hospital Room

Getting Sleepy (too bad that didn't last longer than an hour out of the 12 we were supposed to do)

Stolen Entry

One of the parents on the AS forum wrote this. It is so amazing to me how someone I don't know can pretty much sum up our lives with Addie. Sometimes I think all the kids with AS are just long lost cousins.

My brother is awake now. It’s three in the morning and four-year-olds sleep at three in the morning – except my brother; which means that most people are sleeping except my brother, and my parents – and sometimes me. Because “now” isn’t some random night when some little boy has had a nightmare or has caught some illness, “now” is any night of any week in any month from the day my brother came home from the hospital through today and onward - to days unknown. His body doesn’t produce the sleep stuff, melatonin, the way everyone else’s does. And so, it’s three in the morning and my brother is wide awake.

My parents aren’t. They haven’t been “wide” awake for four years. They live in that place between waking and sleep in a routine choreographed and rehearsed in worry, duty and exhaustion. Like any parents of a newborn will tell you, sleep and rest and sanity are like dreams – except my brother is not new, and the dreams have become distant and unlikely. They shuffle and spin from doctor to doctor, from therapist to therapist, and from hospital to hospital in search of answers, questions, and information. The story of my brother that used to quiver their voices and water their eyes has become so over-told to neurologists, ophthalmologists, orthopedists, physiologists, pediatricians and doctors-on-call that the delivery is robotic; it takes a lot more to break their hearts now.

Now, the heartbreak comes in little snippets of sequestered tears shoved behind closed doors. Hope is what you have when fear is where you live – my parents have nothing but hope. They are tireless in pursuit of betterment, education, therapy, mobility, communication and a cure; all of which are struggles, some of which are impossible.

My family is strong, but not infallible. My mother contends with my brother for numbers of doctors – and prescriptions. She leads the charge in a fight that cannot be won, but can so easily be lost. And every time my brother has a seizure or hurts himself her soul aches to fix it – but she can’t. Nothing can. Not money, not doctors, and not prayers.

My brother is tenacious. For six weeks his brain seized constantly – he was confused, disoriented, tremulous and scared. He also re-taught himself how to crawl every morning, dutifully re-learned how to play with his favourite toys, and found time to reacquaint himself with his sister. He would fall flat on his face, convulse on the floor and still never forget to smile when he saw me. He forgot how to crawl, how to babble, how to eat and how to swallow – but he never forgot how to smile when he saw me. He has blood tests and leg-braces and eye-operations and excruciating cramps – but he has never forgotten how to smile when he sees me.

At first it was here and there. A well-intentioned woman in a grocery-store line asking his name and deciding he was shy because he would not respond – my parents too aware of how crushing it would be to tell her he could not speak, and too afraid of the follow-up questions. Next it was busy-bodies in the park watching him walk as he held hands when he should have been walking on his own and writing it off to “late-blooming”; but you could see the moment at which they understood and then felt shame for saying anything at all. Now it’s a nosey dog-walker who diagnoses my brother from a bench announcing that their nephew/niece/cousin/brother has autism, cerebral palsy, or something – but never the same thing. And they go on to tell us like it is and what to do and how to help and where to go and it requires an unyielding understanding of good intentions for my parents not to either sob uncontrollably or assault them – but my family is strong.

My mother’s heart breaks once more every time her mother says how sorry she feels that our family has to go through all this, and it breaks again when all her father ever wanted to do was to teach his grandson how to drive a tractor and pick a guitar but in his eyes she sees that he knows it will never be. My father’s heart sinks when he remembers his own childhood and he wants so bad to give that all to my brother but can’t. And it sinks a little more when he remembers that he can’t make it all better, either.

But then Mom comes home from a doctor’s appointment or therapy; but then Dad comes home from work or from a meeting; but then I wake up from a nap or come back from a trip – and there’s my brother, smiling when he sees us.

All of the pain, all of the frustration, all of the confusion, shame, exhaustion and all of the heartbreak flies right out the window when we see my brother’s smile, and hear him laugh, and watch him bounce off down the hallway on his way to make trouble for whatever unfortunate toy he’s going to chew up next.

It’s easy to feel sorry for all the great things my brother can’t do, and easy to feel bad for all the horrible things that seem to happen to him – it’s easy to catch myself feeling cheated for all the conversations I will never have with him and easy to be sad for all the milestones I am going to hit alone. My brother is joy personified, and nothing is easy for him. He earns every bit of his happiness, and I would be a fool not to learn everything I can from his example.

My brother is awake now. He probably just had a seizure and is scared and confused. He probably is thirsty, but he can’t remember how to drink. He probably hasn’t slept much and he’s probably lonely. He might even be a little sad – we just can’t be sure. But there is one thing I know for sure – when we open his door to bring him his water and give him a hug and my parents silently wonder what the future of our family is in their sleep-deprived daze at three in the morning - even at three in the morning! - my brother will be smiling when he sees us.
_________________
Father of Edison - one of the two greatest children on earth.

Humbled

I am so humbled by God. Truly just wanting to fall on my face in front of him for his mercy. To start off, Addie has been sleeping in our room since she was born. We felt like that was the best way to keep her safe. As she has gotten older, she has gotten so big and she is growing out of her crib. Then, last week she broke the front door off her crib. Oops! So, I have been researching different types of beds to keep her safe. I began with this webpage that listed a bunch of different beds other angels used. But, truthfully, I felt like alot of them looked too much like cages for my comfort. So, then I tried looking up different manufactured beds. That's when I came across the Sleep Safe Bed
This bed looked great! It had very high rails with windows. It wasn't short on style either (at least among these types of beds) Well, on their website, they were offering a contest. A chance to actually in one of their beds valued at $8,500. Guess what, WE WON!!!!!!! No kidding, we actually one the giveaway for this quarter!!!!! I am so grateful. They were so nice and so helpful! Addie will be receiving the Sleepsafer model bed in 4 weeks. We didn't have to pay shipping or anything!
So, Angel friends go enter their contest! They are giving away a bed every quarter. If you don't win the first time just try again! I will be sure to post pictures when we get some!
What an amazing God we serve!!!!

Beautiful Homebirth Pictures! (warning: some nudity)

Make video montages at www.OneTrueMedia.com

Sorry it's so big, I couldn't figure out how to make it smaller. It's still an empowering video though.