Thursday, July 19, 2012

"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. 

video

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. 



Saturday, July 14, 2012

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!!


Wednesday, July 4, 2012

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.