Saturday, January 12, 2013

Sometimes it hurts to be a parent. . .

Sometimes we don't have the answers.  No wait, it seems lately, more times than not, we don't have the answer.  We know our children pose challenges, all children do, some more so than others, but all children stretch the imagination and parenting skills to the limit.  However, it seems that just when we have a grasp, a firm hold on how we want to proceed in a given direction with a given child. . . they turn direction, or just go into a full reversal and completely jump course all together. 

Marriela is our current course jumper.  She was on a nice roll.  She had many fantastic days in a row.  Now, let me clarify what a great day for Marriela is at school:  She does not hurt herself. She does some work. She spends some time in her classroom with her peers.  She smiles, she laughs and says many funny things.  School work. . . that's optional most days.  Keeping her within a fine system of contentment mixed with productivity, in a very broad sense of the word, is the daily goal. 

For those who haven't read her post on who and what makes Marriela the unique and amazing person she is, I'll paraphrase.  She was the 5th child of a crack addicted mother who had been raped repeatedly by an uncle at 9 years old.  Her mom was addicted to alcohol by 9 when she came into the foster care system herself.  She was crack addicted at 13.  Her first baby came and was taken before she could even see her at the age of 17.  She is HIV+, bipolar and schizophrenic.  She was kicked in the stomach while pregnant with Marriela and fell down a flight of stairs.  While inpatient, they told her she was only 19 weeks pregnant and was in the midst of a miscarriage.  She was monitored closely due to her other injuries as well and was checked often to see if she had completed the miscarriage.  She was asleep on pain meds when a nurse checked and discovered a tiny girl breathing, wrapped in her cord lying motionless on the sheets.  Immediately it was apparent that Marriela wasn't just 19 weeks, a code was called and my little girl was whisked away where she spent the next 3 months fighting for her life, addicted to several drugs, in a pain killer coma (as they had treated mom heavily due to her injuries and assumption of a non-viable pregnancy). 

Fast forward, we met Marriela, in person, on her first birthday.  She was tiny.  Only 11 pounds still at a year old.  She couldn't sit or stand, but had an amazing smile she shared it readily.  We knew we were taking her home.  I picked her up from Boston when she was 16 months old.  She had gained some weight, 16 pounds at 16 months but was clearly not "well".  We had shared our concerns that her medical needs in Boston may have been being understated and that the 70 year old foster mom may have not known her true needs.  When she arrived we knew immediately we were right.  Her asthma and breathing were terrible.  I spent weeks on end up all night giving treatment after treatment and keeping her O2 on.  We added an apnea monitor because she started "forgetting" to breath.  She was eating rice and eggs and whole milk at her foster home.  She could not grow or gain weight and the doctors were highly concerned that she was failure to thrive due to a severe underlying issue.  We started her back on a bottle with a prescription formula.  It was slow and her poor belly swelled to 3 times its size with every bottle.  No one knew what was wrong. 

Fast forward again, Marriela has grown and at 3 she begins to take her first steps with her AFO's (foot orthotics).  She finally outgrew her infant car seat and broke the 20 pound mark at 3 years 1 month.  I turned her around and put her in a "big girl" car seat for the first time.  She LOVED it.  At 3 1/2 we knew her mothers genetic contribution was going to be a mental health disorder among other things.  We began the quest for help early.  She had a brother that was admitted to the hospital at 9 years of age for severe mental health issues and was not released for a year.  I would not and will not allow such a fate for my sweet baby girl.  We started with the typical ADHD meds and over time moved up doses, tried different medications and eventually started on actual mood stabilizing medications at the age of 5.  She was/is one of the most distractible children you will ever meet.  With the exception of watching her current obsession of the moment on youtube, you can't keep her focused on anything for more than a moment at a time.  As the developmental pediatrician realized she was more than his area of expertise was equipped to handle, he referred her out to a psychiatrist. 

This was a new chapter.  A new experience.  A new set of rules, meds, trials and tribulations.  Over the years we've tried many things.  A lot have worked but when it doesn't, it's not a mild failure.  Typically it's a terrifying trip into the unknown and her reactions to medications have ranged from none to a state of mind I can only liken to the abyss of insanity.  Once, they started Depakote.  She became scared, beyond words, her mind was racing and her heart was thumping out of her chest.  She couldn't stay still and she lashed out at anyone and anything that came near her.  She didn't sleep for 6 days straight.  We wanted to call someone for help, but couldn't figure out how to safely get her into our car.  We couldn't safely get her even into an ambulance.  Where would they take her?  What would the fill my little girls body with?  So we stuck it out at home and weaned her off of that evil drug on our own.  She spent almost 4 days wrapped in the safety of our king size bed so she wouldn't herself or anyone else.  Once the drug was out of her system. . . Marriela was back.  Meds have a risk with everyone we try.  But not using meds has proven just as big a failure. She needs meds, just as a seizure patient needs meds to stop the seizures.  Marriela needs meds to regulate the chemicals in her brain. 

So we come to the present and assess it for what it is.  Marriela had a terrible time at school last week.  On Wednesday she really tried to hurt herself and in the process, hurt some teachers as they worked to protect her from harm.  We met with the team.  Lots of tears.  She is deeply loved and it hurts us all that we don't have answers on how to stop these events.  It's a torment for everyone, but most of all, Marriela. She is devastated afterwards, and once the air clears, she begins a round of apologies, voluntarily and with sincere remorse. 

The course has changed.  She's bigger, she's stronger, but she's developmentally, still a little girl.  She has a brain that works at the speed of light and when a negative thought invades, it darkens everything.  A good or better yet, a great, thought makes her shine like the sun.  We are now working with her team to keep her at her beloved school.  The future is fuzzy.  There is no place that meets Marriela's unique needs.  No program that will love her and treat her with the level of respect she receives at her school.  Yet, we will be forced for next year to make changes.  As parents we are facing the unknown for our little girl who has proven and demonstrated the indelible human spirit.  The desire to persevere despite incredible odds as a baby and now as my amazing daughter, has made me a better, albeit, clueless, parent. 


1 comment:

  1. I love her!!!!! I know it'll all work out.thinking and praying for you guys.. miss ya!!!