Reining in the Chaos. . .

Well, I've been giving new direction to my life.  I have found something new to entertain me.  This new thing has my mind working in all kinds of different ways and its exciting!  This new thing. . .are you ready. . .is PINTREST!!

Egads, is this thing addicting!  Oh my goodness, who knew you could use a dresser in 35 different ways, other than to hold clothes.  Or that Toilet Paper rolls could make amazing wall decorations!  Or that you could prepare 2 months of meals in one day!  What??!!  Oh the possibilities! Sooo, I sat down and thought, I need to make a list, my mind is spinning and I have to get it under control.  So, I thought, maybe, I should chronicle my projects, ideas, screw ups, failed attempts and hopefully successes with those who have nothing else better in life, than to read my rantings.  Now, I have to be careful, and preface this with the disclaimer that this will be an all inclusive, chaotic menagerie of  stuff.  Maybe some cooking, definitely some painting, possibly, some organization and even a slim chance of a parenting tip that - for whatever reason - magically worked one day.

So if you're up for some interesting and probably unsuccessful PINTRESTING activities. . . then come along.  If not, I truly do understand and will hold nothing against you.  :-)

The general theme of the blog will be about reducing chaos in a house of never ending chaos.  Sounds contradictory, I know.  Go figure.  But, in general, isn't that how life is.  One giant contradiction after another.  My acceptance of this chaos to this point was purely out of self-preservation.  If I tried TO hard to organize and structure our life, then I'd be one very disappointed and worn out lady.  Add to that, that many of the silly things my kids do, like get deathly ill and need fun little ambulance rides to the hospital, or the coming of the "24" hour flu (which will last a minimum of 10 days in our house, are out of my control.  Again, that is not my plan, but clearly my good friend upstairs has a sick sense of humor.  So, organizing in that scenerio, though still possible, had its limitations. . . until PINTREST.  Oh my, the things I have missed and how I could have shaved off 3 minutes in the morning, an hour at dinner, 7 hours over a course of a week - it's like getting a whole day back!  So, I'm determined to implement some of these amazing ideas into my crazy, chaotic life. . . I'm reining in the chaos!!

So come on over and visit me at  reininginthechaos.blogspot.com

Hugs,
Renee

"MOMMY!! Marriela is bleeding!!"

"MOMMY!!  Marriela is bleeding!!"

I run up the stairs to find that my daughter has found where I stash my razors and decided to shave.  Now, she says she was shaving her cheek, but somehow she managed to "shave" her LIP!  Really?  We apply pressure, some ice, and pour some rootbeer, soon all is well.

"Mommy!!  Sergio is in the fruit punch again."

Pull my son's arm out of the large container of red fruit punch.  I dry off a very stained, red arm.  Off to his room for yet another time out.  Good Lord this child is determined to find liquid!

"Mommy!!  I'm stuck!"

Arrive to the boy's room to find Cody with nothing but his legs sticking straight up, with his head wedged along the side of his bed.  Apparently a toy tried to escape the beating it received daily at the hands of my 7 year old son. . . and Cody went to retrieve the deserter. I pull up my son, with his toy in hand.

The needs are never ending.  The creativity of the needs is always shocking.  The number of needs is beyond comprehension.  Shoes are too loose, shoe laces are too tight.  Socks are too loose, socks are too tight.  Beds are wet, backs are itchy, dogs have fleas (not really but seems to be an ongoing issue for the kids), computers won't connect, X-box is off-line, medical bracelets are too loose (and then broken), kids are missing, kids are found, teeth need brushing, bodies need washing. . . oh my, I'm amazed I have any brain matter left!   

My daughter has made it her mission to convince me that I NEED another child.  I apparently owe her a sister.  She blames me for taking her precious Ethel, our foster daughter, to the hospital and letting her die.  And in fact, she's not entirely wrong. . .I did, in fact, take Ethel to the hospital where I was blessed to help my daughter-who-was-suppose-to-be, pass from this world full of pain and misery and move to one of peace and love.  I was her mom for the entire time she was with us, I fought for her like her mother, I loved her like her mother.  Marriela likewise, loved her like a sister and in the blink of an eye, made a connection that no one could have predicted.  But, I have reassured her that I am NOT having another child, nor am I looking to bring any more children into my home.   She is not convinced and thinks that if she gives me daily, and loud, reminders, then I will be swayed.  Not happening. Recently, I resorted to telling her that I would adopted ONLY if she can find a purple baby with pink polk-a-dots and orange eyes.  If, and only if, she can find me a baby that looks like that, then we'll adopt again. 

My daughter has also made it her mission to convince me that we NEED an RV.  For all those camping trips we don't and can't take, sure, we need an RV.  Again, not happening.

My other children are convinced we NEED a hot tub.  For Joshua who hates water, Marriela who is terrified of hot tubs (don't ask), Trayvon who can't use one and Cody who is all of 50 pounds and can't stand the warmth for more than a minute or two.  So we need one for ME to clean and keep free of algae.  If it's anything like the pool, we'll fail.

"Sergio is in the toilet again."  Oh that child!!  How does he know to watch the lock on the door and can wait it out patiently to grab a quick chance to splash in the icy coldness of filth in a toilet bowl.  UGH.

So we have lots of NEEDS here.  Some perceived by the children, some demanded by the children and some, well. . . sometimes there are just no words to address those crazy needs I find myself facing on a far to regular occasion.

Alas, once the needs come to an end, I'll be wishing for and looking to find kids who need me.  So, I'll enjoy removing the red stains from my son's arm, hiding the razors from my precocious daughter and try to keep the toys somewhat cleaned up so my son doesn't need to fall headfirst looking for them.  Hugs.

Thank you. . . for the gift of life.

We are coming up on 8 months since Trayvon's heart transplant.  That's amazing to me.  How time has flown.  I have sat down to write a letter of thanks to the donor's family many times.  I wasn't ready.  I still find it incredibly difficult to process the reality of what it meant for my son to live.  A fellow human being was being grieved over by their loved ones.  A young man had died and was giving my son his chance to live.  It's overwhelming simple and yet devastatingly complex.  So tonight I made my first attempt.  I'm sure I'll revamp it.  I'm sure I'll write several other "options".  But, tonight I sat down and faced the raw emotions and shared with this wonderful family what happened in those precious hours they were grieving and how the gift has changed a life.  

Dearest Family,

Where to start?  I guess I’ll start with, Thank you.  It’s so trivial and small, but it carries such a powerful message.  Thank YOU. 

The gift of your loved one’s heart has saved the life of my son, Trayvon.  He had been waiting for over 2 years.  The last 6 months, he was dependent on oxygen and strong IV medications.  He spent many weeks in the Pediatric ICU for irregular heart rates and the need to be “shocked” back into rhythm.  We didn’t see him as sick.  He didn’t see himself as sick.  We had to be persuaded that now was the time. . . but then we waited and no call came. 

I had decided to take only a few of our six children to Church on 2/12/12.  As we were walking in I reminded Trayvon that he had a dental appointment in the morning and that it would probably be his last one for a while, since we were hoping his call would come soon.  He responded that if he was lucky, his call would come today so he wouldn’t have to go.  Tray hates the dentist.  J   While sitting and listening to the sermon, I thought I should check my phone in my coat pocket.  I was worried that if it vibrated in my pocket, I would miss “the call”.  As I pulled it out to be sure I hadn’t missed a call, the phone vibrated and the word, “blocked” was on my screen.  Transplant warned me, the call would say “blocked”.  Tray got his wish, no dentist appointment.  By 1:30 am my baby boy had flown 2 hours, taken a mad ambulance ride from NJ to NYC, had a whirlwind of an admission to the ICU and brought to the operating room.  At 5:30 am, the doctors said the operation was over.  As I was rejoicing in the gift of life, you were grieving in the devastation of loss.  I was overwhelmed and cried for a very long time.  I knew that emotions would flow.  I knew what Tray’s chance at life would mean for another human being.  But, when it hit and the finality of it all. . .I was overwhelmed. 

Tray arrived an hour later, extremely fragile and precariously unstable.  But, his oxygen saturations were 100%.  We hadn’t seen that number in years.  His heart was so strong it was shaking his whole body with each beat.  In fact, once he was stable and the breathing tube was removed, he had to be reassured that his heart was very much working perfectly.  He was scared at how hard it beat, he had not felt his own heart beat in over 10 years, due to severe heart failure.  The only time he would feel it, was when it was in a very dangerous arrhythmia.  What a gift!

Today, Tray goes to middle school.  He takes his 13 medicines without any complaint.  He runs, he plays.  He turns 14 in a couple of months.  His skin is a beautiful healthy brown now instead of a dusky gray.  He used to have severe and painful varicose veins from his feet to his thighs due to extremely poor blood flow.  They are all gone now, and he has no more leg pain and cramps to awake him in the night.  He has a “girlfriend” who, like he, had a heart transplant and like him, is also adopted.  What a match made in Heaven. 

The gift of a new heart is beyond Trayvon’s capacity to really understand at this time.  We were warned that he may not even really “get it” for a while and then one day. . . he will and it will weigh heavy on his heart and mind.  But, I want you to know I get it.  I understand the heartache and pain that went into that decision.  I have tried to picture who was the young man that gave my little man life.  I just can’t.  We aren’t allowed any demographics.  All we know is our donor was male and close to our hospital.  Was he husband, a father, or maybe a college student.  What food did he like, what sports did he like?  Was he artistic, or musical or athletic?  Whatever he was, he is Trayvon’s angel of life, nothing can top that ever.  He was a miracle at birth and a miracle at death.  I can only hope that one day I have the opportunity to return the favor to someone else. 

If you wish to contact us.  Please, do not hesitate.  We would be honored to know you more.  If you chose not to, we understand.  We would love to send you a picture so you can see your gift in action. 

So, the only really appropriate words that can do any justice at all to such selfless act are, thank you. 

With all of my love, and deepest sympathy and thanks,

Renee, mother of Trayvon

The House of Courage. . .

I woke up at 6:15 to the sounds of my daughter stomping around, looking for her “music” (the i-pad).  She is always out of sorts when she awakes.  I slipped downstairs and made a pot of coffee, grabbed a blanket and took her out to the front porch swing.  We sat there, without music, listening to the rooster crow down the hill and cows mooing in the distance.  Marriela sat there calmly for over 45 minutes, a first, a memory I will always have.

We were at the House of Courage by Champions For Life, for a week vacation.  We have not been on vacation as a family for over 6 years (and that was a Make-A-Wish trip) and we were only a family of 6, now, we’re a family of 8. 

To be honest, I was very scared to pack everyone up and go off, away from home for an extended period of time.  So much packing!!  IV supplies, monitors, medications, supplies, clothes for 8 people, fishing poles, frog nets, first aid kits, back-up meds and IV supplies, baby swing, pack-n-play, 2 dogs, a dog cage and their supplies,  the list goes on and on.  2 completely packed vans later, with just enough room for the passengers, we were off. 

The House is amazing.  A log cabin in its finest.  A magnificent view, a breeze the never stopped and a calmness you just can’t explain.  There was no WiFi, but the wonderful X-Box supplied by Champions for Life, and the large screen tv, was more than enough electronics to entertain the boys.  We were well prepared for Marriela’s need for music, but even that was taken care of, with a big stereo at the foot of her bed.  She was in heaven.  The fridge and freezer were filled to the top with food, the cupboards all stocked.  A plate full of amazing cookies on the counter.  And a delicious dinner delivered almost every night.  It truly was perfect. 

We unpacked the vans.  Set up Sergio’s corner of the living room, where he would be joined by his nurses for the night shift.  Clothes put away, baby gates up.  The breeze was amazing and the kids were truly happy.  Then we explored.  Opened up the garage and found the golf cart.  Again, Marriela was beyond ecstatic!!  It was the happiest we’ve seen her in a very long time.  Peter took turns taking them out and seeing the wonderful fishing pond at the end of the road, the trails and the fields of corn and soy beans.  Later we packed up the car and drove down with the makings for s’mores and started a fire in the large fire pit.  The kids enjoyed themselves soooo much.  The act of “camping” is a complete impossibility for our family for many reasons, some medical, some behavioral, and some physical.  So, for us to be sitting around a campfire, fishing off a dock, eating s’mores and enjoying the outdoors, was really more than I could have dreamed of. 

We headed back to the house and settled in, after Marriela happily passed out on the couch, to watch a family movie, which were also provided, as well as the snacks!!  Justing sitting and watching a movie in the peace of the country, with the breeze blowing over us, cuddling under blankets. . .was awesome.  Everyone slept wonderfully in their beds. 

The rest of the week was more of the same.  We discovered several things this week that took us pleasantly by surprise:

1. Cody is truly a boy of nature.  He didn’t wear shoes almost the entire time we were there.  He happily caught frogs with his bare hands and was happy to wander in the reeds by the pond without any fear of anything.  He grabbed fish with his hands, and learned to cast a fishing pole.  My dad would have been profoundly proud of my baby boy.
2. Marriela is so much calmer in the country.  A golf cart is as good as any medication we’ve ever tried, at keeping her happy.  She is NOT a fan of anything to do with fishing.  She was very anxious about the “bait” we kept in the fridge and had to eventually conceal the containers so she didn’t know we were keeping worms next to her OJ.  Marriela conquered her fear of boats, as we went on a wonderful Pontoon boat with the boys and our nephew.  She was scared, she cried, she asked to go back. . . she also laughed, thought the boys getting sprayed was awesome, laughed when daddy made the boat turn and happily got on and off the boat with just a hand hold.  Amazing progress for someone who is scared to even walk past a boat sitting on a front lawn. 
3. Tray was an excellent weapon maker with the help of several rolls of medical tape.  He took sticks and rocks and turned them into very nice little arrows and other interesting items.  He loved catching frogs, but terrified at the prospect of touching them!!  He did eventually get up the nerve to touch a worm with a single finger, but he was happy to look at them from afar.  He was a good shot with the BB gun and hit the target more than he missed. 
4. Joshua has far less seizures in the country.   Probably related to the number of electronic devices, but could be just the calmness of the environment.  He only had 3 the entire time we were there.  The night of our return, he had to have rescue meds to stop a bad run.  Joshua and I had amazing quality time sitting at the kitchen table putting together puzzle after puzzle. 
5. Sergio was exactly the same.  LOL  He was determined to get into any water he could.  That included, the toilets, kitchen sink, large fishing pond, etc.  But if you set him up with a little bucket of water, he was happy.  Sergio LOVED the porch swing and actually took a 2 hour nap one day on the swing! 
6. Annette joined us for a couple of days.  She also enjoyed it very much.  In time they will be building a ramp in the garage so she will be able to get in and out easier.  But we had a great time at the Champions For Life fitness center.  She walked a balance beam, bounced on the trampoline, and enjoyed taking pictures of the kids. 
7.  Peter, Joshua and Cody all have bad allergies to the country!!  The sneezing was almost comical.  Thank goodness for Claritin!! 

Overall, I couldn’t have asked for a better vacation.  The kids were happy, outside, getting fresh air, eating good food, and enjoying life without the need for electronics.  We made memories, overcame fears, learned new skills, and enjoyed the peace and relaxation a vacation is suppose to provide. 

Thank you to Champions for Life and the House of Courage.  We are honored you thought of us and can’t wait to enjoy the “cabin” again someday. 

 

"It ain't about how fast I get there". . .

Marriela.  Anyone who knows her, knows she's high intensity.  She's high energy.  She's highly distractable.  She's profoundly talkative.  She's highly unpredictable.   She's Marriela.  She's NOT quiet, nor is she one to take the phrase "just a minute" lying down.  Her minute is a nano-second.  Her birthday is a lifetime away no matter how close we're getting.  She thinks she'll be 30 in just a few months, and wakes up daily announcing that she wants to be 30 now.  Why 30 you ask? 

Well, at 30 Marriela will be having/adopting her baby.  She fluctuates almost hourly whether she will have more than one, if it will be a be a girl, or a boy, if it will be adopted or born out of her tummy (you know that may hurt she states) and whether they will be Chinese or not.  In addition to having children, she will be getting married to a "brown" man who she is claiming will have to change his name to "James" like on the movie Look Who's Talking.  She will be acquiring several vehicles including, but not limited to, Lisa, our night nurse - her black Jeep will be for Marriela's husband.  She is getting our neighbor's white Jeep for herself.  She will be getting our red van because it has the video set up for her babies.  We spend a lot of time collecting things she is "saving" for her baby when she's 30.  Some days I can't wait for her to be 30!  It's exhausting all this planning.

Marriela is also a huge fan of the microphone.  We spend many hours looking at different types of microphones on Google.  Oh, and I must give props to Google and the images option, it has saved me many, many headaches!!! She wants to sing on the stage at the Fairgrounds and just LOVED her time on the stage at her school talent show.  Though I have seen her sing this song many times. . . seeing her sing with her heart and soul was truly overwhelming for me.

The Climb Please click here to see her performance.

Marriela is truly a challenge to parent.  It is highly rewarding, and truly exhausting.  We have known since she was 3 we would be dealing with mental health issues.  She was born to a crack addicted mom who was diagnosed with bipolar AND schizophrenia.  We had prayed that the 2 were drug induced more than genetic, but were also willing to take on the challenge should it present itself.  It did, and early.  She has been medicated since she was 3 1/2 for things from ADHD, to mood disorder, to bipolar.  She is developmentally delayed.  She is autistic like.  She has severe anxieties.  She is a combination package and we'll probably never have a single defining disorder... that's ok.  We make as many informed decisions as we can in regards to medication.  We conceded last year that we needed to become much more aggressive in her medications as she was just very unhappy and struggling most of the time severe agitation and anxiety.     Lithium is working for her.  Not perfect, by a long shot, but it's so much better than the 3 hour tantrums and the pervasive anger and frustrations.  She would never smile or laugh.  Now, she is easily humored, though we spend a great deal of time "stomping" out fires all day long.  She is a hot head, but she can be redirected now and that's a huge improvement. 

She is afraid of bathrooms, water, pink dog life jackets, furry Christmas stocking and many many more.  Whenever I am admitted with one of the other children, I have to send a picture of the bathroom for her too see.  She assess it and then determines whether it's "too scary" to visit or not.  She will NOT enter the basement for fear of the Fuzzy Top Christmas Stockings.  That actually works in my favor (we tend to hide things down there we don't want the kids to see, like presents and such LOL). 

In the whole scheme of things, Marriela is by far our most time consuming child.  She is also the most rewarding in regards to small successes.  When she has a good day, EVERYONE notices.  She is also the one that says some of the funniest things and her take on life and day to day events is always highly unique and humorous.

It's all about the Climb. 

A Word to Prepare. . .

This post is not about the kids directly, but it's most certainly about them indirectly.  I am not a dooms day type of person and actually strongly dislike when Peter jokes about the world ending in 2012.  I didn't go through the various hells that I have with my kids to have it all come to an end this year. . . plan and simple.


However, on that note, there are a few things everyone needs to consider.  We are in very unstable times.  Natural Disasters are much more common.  The weather is highly unpredictable and food shortages are here.  Soooo, with all of that amazingly wonderful news (none of which you were not aware of).  There are some things I would suggest everyone do to prepare for a family emergency.

The most important is to know how to do some basic survival things.  No, I don't mean pick up a cross bow or learn how to skin a squirrel.  EWWWW!!  I mean, things like know how to make water safe to drink Water purification.  My home town of Glens Falls, NY has been on a boil water alert for over 4 days now due to e.coli.  If this alert was during a power outage as well, then boiling water for many people would not be realistic, therefore all the bottled water would be gone from the store shelves.  If you knew just a couple of things, you would be able to take any water and transform it into safe usable water for you and your pets or better yet, you'd already have a supply to call upon in a situation like this. 

Another basic aspect of safety is to prepare a good  Disaster Kit.   I mean, a serious one for YOUR family's health needs.  We have kids with central lines, my kit has all the stuff I need to care for those lines for 3 days.  What if we had to go to a hotel due to a natural disaster... I don't have time to grab all of that crap and odds are good, I'd forget a key item.  This would be an epic failure for my IV dependent child.  But, a first aid kit also has extra meds for anyone taking meds, a list of all the families medical issues, their basic history and where their records are stored.  We have also made photo copies of SS cards, insurance papers, marriage license and birth certificates.  One of the major obstacles for children of Hurrican Katrina was the re-entry of school in their new cities without any documentation.

 And finally, food.  Again, I'm not suggesting you learn how to hunt your own food or become a master gardener.  I'm talking about adding a few canned goods each shopping trip.  (food preparedness)  You can store them in a tote, under a bed, in a closet.  Foods your kids will eat and fill them up.  Foods easy to heat with a fire but in a pinch can be eaten cold.  Good things are spaghettios, fruits, applesauce, veggies, baked beans, soups and powdered milk.  They're not great to eat forever, but can certainly be sufficient should you have to go for several days in a severe winter storm without access to a store or any power.  I also have some tuna, canned chicken breast and a couple of small jars of mayo.  This way if I have to open one to make some tuna, we'll just have to throw it out if there is no way to refrigerate it.   If your child is on a formula, then be sure you set aside some as well.  In West Virgina the State had to step in and help people find food pantries and replace food stamps when they had to endure a week long power outage in 100+ degree temps.  Not only did they have severe food issues, but they were struggling to get to and from places due to many cars failing in the unrelenting heat.

Ok, that's all I'm going to say for now.  :-)  I know it wasn't my normal kind of post, but I worry about those with kids.  Especially those with kids and special health care needs.  They are the ones that suffer the worst first.   We actually do a bit more planning here.  Maybe too many Zombie movies or Survivalist boards, but these are the bare basics.  Learning how to prepare a bit more is actually fun and the kids get a kick out of it.  LOL  I'll be attending a "canning" class next month to learn  how to can food to last for years.  To me, this sounds super fun.  Anyone want to join me, just let me know.

Happy Preparing!!

She Did It. . . We Did It.

"Call in your family." Those were the words of the doctor as my daughter laid in the bed in a room we had stayed in many times before.  She was septic again, but this time, she was blue and unresponsive.  We had agreed on a DNR making it unlikely that she was going to make it through the night.  The only "family" I had to call at the time, was Peter.  1 hour later, I was joining her in the ICU watching her eat crunchy cheese doodles (the ONLY food she ate for the first 9 years of her life) and laughing at Barney.  I immediately revoked the DNR, never to sign another one for her.  I figured, if she could get that much better in one hour, then what would I be doing if I denied her that hour to get better!!  It wasn't my place to decide when her time to go was. . . .

18 years later, I have finished moving her into her first "apartment".  She is sharing a house with another disabled woman.  She is nervous, but happy.  I am nervous, and  happy but very sad too.  It will grow on me, just need to let the reality of it all sink in.  She is gone and out from under my wing. 

This little girl, was the apple of the eye from the day she entered my classroom.  Once, when she was inpatient at Harlem Hospital (which, by the way, was a TERRIBLE hospital), Peter and I went to visit.  He knew she meant a lot to me, but when we left. . . "NeeeeNeeee" (her attempt at Renee) was all we could hear down the corridor.  It was heartbreaking and truly tore at my soul.  She was my daughter from that day forth.  I went and sat with her each admission.  The group home never even knew, no one was ever there.  One day, her feeding pump was gone.  She was tube fed, 24 hours a day, so why wasn't she being fed?  The adult floor was short pumps so they took hers.  15 minutes later, the adult floor was short a pump again, but Nettie was getting her feeds like she was suppose too.  Another time, I was there when they were putting in another central line.  I found her, unsupervised, in a stretcher in a long dark hallway awaiting surgery.  No one was around.  What if she had fallen, what if she had gotten sick, I was beyond livid, but as soon as they found out that I was of no relation, I was escorted out.  I called myself "mom" from that day forth.  

We unloaded all of her belongs of 22 years.  All the things she held dear along with all of the new and wonderful stuff we bought together Saturday at Target.  Her bed was made, the desk was painted and looked awesome, her stuff was put away and I spent 4 ridiculously long hours building her new dresser (OMG that was NOT fun!).  But, she was in her new place and smiling from ear to ear.  I couldn't help but smile too, even though I just wanted to turn and cry.

Nettie became our daughter by a laundry list of coincidences.   The biggest of which was the mistake made by the grouphome that signed a form allowing her to attend the school I was teaching at.  I was warned, she wouldn't survive another 3 months.  Fall and winter were her worst times and that she was far to fragile to survive yet another pneumonia.  So I placed her in a small chair in the corner of the room and we waited for her to die.  By Christmas break, when she hadn't missed a single day of school yet. . . I realized, I needed to actually try and teach this child.  So teach we did.  She started talking, sitting up without assistance, and clearly we favored each other.  I helped her get her first wheelchair where she learned she could push the wheels and learned what independence meant.  Who knew how far that concept would go!!

So, here we are.  We now have 5 children living at home and one living out in the world (7 minutes away).  What a concept for us to acclimate to. But, Annette has continued to elevate our expectations of her beyond what we ever thought she could do.  From learning to finally eat at 9 years old, toilet training at 11, changing her name on her own to "Nettie" at 12, to walking, to doing Zumba, to going to proms and to finally moving out.  She has continued to inspire Peter and I to never underestimate the abilities of any of our children. . . I miss her already.  But, she did it. . . we did it too.