Saturday, February 12, 2011

What Kind of Parent Am I?

Not seven hours after I posted my blog on A Week of Blessings yesterday, I had an experience which I won't soon forget - and it wasn't a good one.  I don't think any good will come from getting into the details of what specifically happened, so I will spare you that much.  In a nutshell, around 8:00 last night, Peyton's nurse summoned me into Peyton's room where I found my sweet little 4 year old girl just breaking her heart screaming and crying.  She was having no success in getting Peyton to sleep with her bipap on, a struggle we've been dealing with since November/December of last year.

So, then, why was I summoned to Peyton's bedside by her nurse?  So that for the next several minutes, the nurse could look me straight in the eyes and tell me exactly what she thought of my ability as Peyton's mother.  My competence, capabilities, consistency, and adequacy as a parent to this special needs child of mine was seriously being called into question.  This nurse speaks her mind and from time to time subtly makes me feel like I'm not good enough, and I stay silent.  It's not all the time - it's just that she apparently is the only person who is capable of taking care of Peyton - in her estimation. 

As you can imagine, this encounter devastated me.  I just held up my hand and told her firmly that I would not stand there anymore and listen to this.  I said nothing more and walked off.  I was just reeling.  I broke down and sobbed uncontrollably for 30 minutes.  My heart was just crying out to God - "WHY??"  "What have I done wrong???"  "I KNOW this is not true!!  Why would she say these things of me?!?!"  I really don't know the answers to most of those questions except that I know in my heart that I have done NOTHING wrong and the piercing words she spoke were absolutely unfounded.  At the end of the day, she is the nurse and I am the parent and I know my child best.

Yesterday, I reflected on how I had been blessed in so many ways during the week - a week which, at that point, already had a couple moments which could have gone badly, and could have caused me to be miserable.  I turned those moments around.  I reflected that I was sure Saturday (today) was going to have many blessings too.  So I owe it to myself to reflect, yet again.

I am an incompetent mother to a special needs child.  Yes.  That is what I am.  That's essentially what the nurse said, so here we go.  Let me spell it out for you:

I - I have had a 4.5 year INABILTITY to get a single decent night's sleep because of the concern I have over my special needs child's health.  I have slept in her room nearly every night for 1.5 years or so, seeing her through a period of seizures, constant vomiting, having to be suctioned so often because she could choke to death on her secretions if I wasn't there to help, and going through periods (like now) where I am literally setting an alarm in the middle of the night so I can get up to give her middle of the night antibiotics just so I can keep her on schedule.

N - Quitting my job 2 years ago during a period in our life that was NOT a financially appropriate time to quit, just so that I could be the 24-7 caregiver that my child NEEDED because up until 8 or 9 months ago, we had NO NURSING care whatsoever to assist me which my child's needs.  FYI - she is approved for 84 hours of nursing care a week - that is the level of care that Medicaid has allowed for her.  That means that her needs are so great that it requires 84 hours of hands-on nursing care by a registered nurse.  What do you suppose that means when we aren't even getting 84 hours a week, not to mention the other 84 hours a week?  I really should have received my RN certificate in the mail by now...

C - Providing CLINICAL CARE for my child that no parent should have to go through.  I have CARED for Peyton at home in ways I'd never imagined.  I am not a nurse, yet I have actually changed out a mickey button three times when Peyton has pulled hers out.  That means I'm inserting a feeding tube into her stomach!!  I've had nurses in the home who have never had to change out a tube!  It means administering IV antibiotics when Peyton's health is so poor that her port is accessed and I have to administer IV drugs to her multiple times a day.  I have even had the opportunity in a crisis where, rather than go to the ER, I have de-accessed her port, grabbed all the supplies and re-accessed it MYSELF!!  That basically means starting an IV.  Myself.  I have to suction my child constantly - whether just in her mouth or actually using a suction catheter which is placed down her nostril, threaded through and down past the back of her throat - just so that I can clear her secretions up so she can breathe!  I have a home full of medical equipment which causes her room to resemble a hospital room rather than a child's room.

Just a few of the things we have in Peyton's room.

O - I am OVERLY sensitive when it comes to Peyton.  I have very strong feelings when someone tries to suggest that things are one way when they aren't.  I am overly aware of the fact that Peyton is different from other children her age.  I am overly conscious of how Peyton's milestones are lightyears away from other kids.  Those things all at one time or another have torn me apart.  I'm better now, but I don't think I'd be "normal" if it didn't bother me that the things I hoped and dreamed for for my child just will never be.  I am also overly aware of how special my child is and that she is a child of God and for some reason He thought it best to place her in the care of Ron and I for however long He has in mind for her.

M - I am as proud as any MOTHER could be with a child.  I consider it a joy, blessing, honor and privilege to have been chosen by God to parent her.  He chose me to be her mother because He gave ME the skills that I would need to live out this part of His plan that He has for both Peyton and myself.

"Peyton's Field of Flowers" by April L. Knight

P - I will PRAISE God for entrusting me with the care of PEYTON. She is PERFECT in His eyes....and mine.

E - I have put in countless hours sitting with Peyton in the EMERGENCY department.  My life gets put on hold whenever she is in a crisis.  She is my priority.  When she winds up in the hospital, I spend ENDLESS hours by her bedside.  I am with her in the hospital from beginning to end - rarely ever even leaving her room.  When she's in the hospital, whether for 2 days or 12 - I am by her side.  I do not set foot outside the walls of the hospital, and rarely even outside the walls of her room the ENTIRE time she is there.

T - I am TIRED.  I admit it.  I am not perfect.  I am tired.  Four and a half years of caring for a medically fragile child cannot be done without winding up a bit on the exhausted side.  Despite that, I still persist with what I am called to do and be.

E - I am an EFFECTIVE advocate for Peyton.  Over the past four and a half years, I have had to step up and be an advocate for her on numerous occasions.  I have fought battles on her behalf because she can't speak for herself.  I fought a daycare when she was an infant when they refused to allow her to wear her hearing aids.  I have fought schools in order to have proper services provided for her, especially when they weren't adhering to what her education plan should have been.  I have fought insurance companies when they failed to provide benefits for her in situations where they had no business denying her claims.  I have stuck up for her in situations where I was the only one who would.  I persevered through the long, tedious, painstaking process of getting Peyton's Medicaid application together - and got it for her.  Why?  Because she can't do it for herself.  Because I am her mother.

N - I have undergone a massive life-transformation when it comes to what being NORMAL is.  Some might look at our family and wonder how we do it.  This is our NORMAL.  It's so not normal to the outside world.  It's beyond stressful at times.  It has meant a dramatic change in how we function as a family unit.  It means lots of sacrifices in many areas of life.  It means we have a healthy 6 year old daughter who has known all about medical equipment, surgeries, doctors, anatomy, and so on practically since she could form the words.  It means we have a 6 year old daughter who for the past year has been able to find her way from the Rutledge Tower parking garage at MUSC to the elevator, to the crosswalk from that building over to the main hospital, around the corridors to the elevator bank which will take her to the floor where Peyton is whenever she is in the hospital.  It means having a 6 year old who writes a Valentine card to her sister like this:

It means having completely different family dynamics compared to most of the rest of the general population.  But this is OUR NORMAL.  I don't begrudge it.  I love my family more than anything.

T - I am, along with Ron, responsible for making decisions about Peyton's TREATMENT which will affect her life.  In the past few months or so, we were faced with the heartwrenching decision of what we should do next for Peyton.  Our options were to have her have one of a couple different surgeries which would change our lives even more.  It would so change her day to day life that, in conjunction with the fact that we weren't 100% certain it would even help, we decided that it wasn't an option.  We also had to decide what to do in the event that Peyton ever had to be ventilated - because we came very close a few months back.  At 38 years old, Ron and I made decisions which quite literally will affect Peyton's ability to LIVE at some point in her life.  We've faced medical situations and decisions which no parent should have to face, and we do so with heavy hearts and sadness at times, but with great concern and love for Peyton.  Why?  It is the responsibility which has been given to us by God for whatever remaining time Peyton has.

So, my friends....breaking it down like this, if the nurse wants to tell me how incompetent I am, then bring it on.  Yes, I am "INCOMPETENT"!!  Every single letter describes an area of my live in which Peyton has blessed me.  I knew that Saturday would bring about many blessings - I just had to reflect a little further!

Peyton, January 2011

Have a wonderful weekend!

1 comment:

  1. You are such a great mom, Sarah! Peyton is just a sweet, beautiful, blessing! <3


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