Monday, August 14, 2017

Planning by Marriela

As most know, our life is a bit 'different'.  But isn't everyones?  No one family is like another.  So we have a different spin on that term 'family' that most, but certainly not the only ones in the world.  We have met other families that look and feel like ours with just variations in the shades of skin, types of medical issues and local of residence.  But they are farther and fewer between than I would like.

Marriela at 16 months.
That said, I love being able to share some of the inner happenings behind these walls because 1.  they amuse me and most that are privy to our conversations and 2. oh heck. . . I don't know, I just think some of the things that come out our family conversations are just too good to keep to ourselves.

Today I thought I'd share Marriela.

Marriela - the source of most of our "What the . . . ???  moments never ceases to amaze us.  She struggles literally every day with her disabilities and mental health challenges.  Until you are faced with a child who can't "think straight" or "make her mind work the way it needs too" as she so precisely verbalizes, you can't understand how devastating it is to witness.  However, these same challenges create for some incredibly comical conversations and life planning.
Marriela at 8 years old

As most of you know, Marriela is committed to having LOTS of children most days of the week.  Then once in a while she proclaims she'll just adopt them all from (insert country of interest at that very moment - as it literally changes by the hour).  She is going to find her husband on Match.com (since recently she learned that Harmony.com is not optimal for finding Italian men - don't ask where that information came from - sometimes it's better not to delve too deep into her research methods.).  Her husband is going to be half Korean, half Italian, and half Chinese.  Yep, he's 150%.  I'll be talking to her teacher about reviewing fractions with her.  He must be 6'7" (and of course those nationalities are all super tall by nature. . . NOT), and have blue eyes (yep, genetics is not her forte clearly).  Her children are going to be Haitian, no idea how that works but she's committed to a Haitian child.
Marriela at 12 years

Her desire to adopt a Haitian child is not new for me, as I have always been drawn to the desire to adopt from this impoverished part of the world as well.  But Marriela has recently taken to researching Mission Trips to Haiti.  In her words exactly "I'll bring my pink water bottle I got for my birthday and give kids and babies drinks of my water to make them stay alive.  Let's send all of my clothes to girls in Haiti."  She truly has a heart of love, but until she shares some of these thoughts you don't always see it.  Many times that heart is clouded by anger and she says and does things that hurt so when these moments shine through, I find it important to note them.

Marriela plans A LOT for life and is often frustrated by the time constraints the world places upon her desire to achieve these goals.  For example she bemoans daily that she "is not getting old enough fast enough!"  She wants to have children by 18 years of age so she is not "old' when they are little.  She apparently deems me to be practically in the grave as I was almost 40 when we adopted her!  In fact, she recently decided she was going to develop an 'adoption plan' for when Peter and I die.  Yep, apparently we're much older than we think we are.  She wrote a letter to Santa Clause and told him he was going to be her new father (and Trayvon's as well) and they will come to the North Pole to be elves with him.  I have yet to get a written response from the big man up north, but I'm pretty sure she's bounced from naughty to nice list so many times in a year, he's quite familiar with her.  LOL   Like I said, she's always planning.
Marriela at 14 years old

Another plan she has is to be homeschooled.  This is new and is directly related to her struggles in the school.  At the end of the year she was having many bad days and required restraining by staff to keep her safe as she was taken to a safer location than the classroom.  She is mortified once she is cognizant of her surroundings again that she was so out of control.  It's not in her control.  Her mind starts a war within it and she states it "tells me to be bad"  and "it gets stuck so I can't hear anyone and use my strategies because my brain is crazy acting".  This year she is transitioning to the high school and I too have some trepidation as to how this will play out.  She has a one on one aide but often needs  two to one aides when she is having a bad day.  She had a very gentle and supportive counselor at the middle school and we don't know what resources will be at the high school which is causing her high anxiety.  Therefore, her solution is homeschooling.  Well. . . it can't be me, I'm working.  It can't be daddy, he's working.  Sooooooo, she sent a letter to God in heaven to ask him to come to her house to be her teacher.  She put the letter in the mail and addressed it simply to "Heaven".  Again, still waiting on the response.  Serious points for having a back up  plan!

As a parent, the hardest part of being responsible for this child, is the unknowns.  I know for the most part the levels of support the other children will need.  Joshua will need 24 hour care for life.  He will be with us for a very long time until the laws change that allow staff to be present overnight.  Trayvon will need support, but in a different way.  Not direct support per say, but lots of guidance throughout life to help him navigate post school transitions, where and how to live independently, and the world of employment.  He has cognitive capabilities for academics, but struggles greatly with daily living responsibilities and life based challenges.  Cody will be going to college, get a good job, have a beautiful family and one day, probably responsible for at least his brother Joshua.  Sergio will need life long care.  Though, the reality is, Sergio's "life long" will not be until adulthood in all likelihood.  He has cheated death so many times I've lost count.  He is dependent upon IV's for life sustaining nutrition and hydration.  However, his organs do not like this arrangement and are now rebelling.  His liver is struggling.  He will be with us for as long as I can fight for a quality of life worth fighting for and only he will be able to dictate when that time is.  So until then though, he's total care or we'd have no plumbing left due to his obsession with flushing inappropriate items down the toilets!
The whole crew.  Several years old, but one of my favorites!

And then there's Marriela.  Will her meds one day allow her to live with supportive staff?  Will she need life long 24 hour care to ensure she does not harm herself?  Will she ever be able to have that family she dreams and plans for?  I just can't answer any of those questions right now, but she's 15 years old as of this month.  Adulthood is rapidly approaching and how to prepare for her needs is by far the scariest and most difficult of all the children.  Sigh.  But also worth every ounce of energy she takes.

And as she just walked away, after being told to clean her room she states. . . "I smell some goodness!" (upon smelling the mac n cheese on the stove) followed by; "I don't want legs anymore so I don't have to go upstairs to clean."  LOL