Pain

I will never understand some things…losing Brianna is one of them.   

She was so precious.  And smart!  So smart…it’s hard to convince people who never knew her…they saw a medical challenge but we saw potential.  She was amazing.  She would learn things so quickly.  And she tried so hard…

She was so sweet…she would actually ask me to lay her face down on my chest when I was holding her in my lap by turning her body towards me and gesturing with her hands…and then she would snuggle and just gaze into my eyes or stroke my cheek or touch my hair or sometimes fall asleep.   I was so proud of her for her signing and I loved understanding what she was thinking.  She was too cute with her mouth swabs…only wanting to brush her teeth on her own. 

The pain is still too raw to express.  And I am so angry.  Really mad…at everyone, at no one, at specific people…

Looking back at the last entry in this blog brings out so many emotions for me.   Love, anger, disbelief in what happened and the irony of that blog post … and last but definitely not least – Guilt.  I have tremendous guilt as a mother for not being able to save my baby.  I know that I was at work and it was not my fault but I still have the guilt.  It is a heavy feeling and I don’t think it will ever, ever go away.

It has been 20 days, 13 hours and 43 minutes…since I saw Brianna playing with her toes and waving goodbye to me as I left for work.   I will never forget that…or the phone call I received exactly 20 days, 10 hours and 28 minutes ago.  

Special Needs Mommy

I am amazed at what I've learned as the mother of a disabled child.  I am the one person who knows Brianna's entire medical history (by dates) by heart.  I can recite the progress she's made, the colds she's had, the surgeries, the therapies...and I know exactly how we like her to be cared for.   We want Brianna to be clean, stimulated, safe, happy, and loved.  We have a detailed schedule for her.  I don't think her care is complicated but things need to be done on time or it is easy to get off track.

It gets frustrating at times.  We have had several nurses in the 7 months she's been home and each time a new one starts...it's a whole learning curve again.  I get upset because they are making mistakes that affect my baby. 

The other day, I came home to find that the brand new nurse had not cut her trach ties to size but put them on her straight out of the package after her bath.  For those of you unfamiliar with trach ties, they need to be tight enough so that only one finger can slip underneath.  Otherwise, you run the risk of the trach falling out or being pulled out.  This is life-threatening.  When I got home that day, my entire hand and then some could have slipped under there.  The trach was hanging out and making a whoosh sound.   Of course, I wasn't home when the nurse was there because I had taken Hailey to dance class.  So now I have to confront our new nurse tomorrow - one week later - because she only works Wednesdays.  I don't like to do that...I like to address things at the time they happen. 

I asked today's nurse how much Brianna sat and played today.  She informed me that she sat in a chair for 35 minutes.  She was actually proud of that, because she thought she was only required to put her in a chair for 20 minutes.  I could not believe what I was hearing.  We were gone for 10.5 hours and she laid around for 10 hours?  I calmly explained to the nurse that the 20 minute guidance was for when she was 6 months old and learning to sit.  Additionally, the guidance said 20 minutes, at least 3 times during the day.  I told her that Brianna is older and can sit up for much longer times...until she asks to move or do something else in fact.  It is better for her muscle development to be sitting than laying down all day long. 

Another nurse was changing the settings on the baby's oximeter alarm so that it didn't beep at 90% but would beep at 86%.  When confronted, she explained that you need to "give the baby a couple of percents" because 90% is too strict.  We explained that her requirement is above 93%, so it already is a few lower than her minimum.  She replied lots of families set it at 86% or turn it off completely when the baby is awake.  She didn't last long...

Sometimes I wish that I didn't have to be so diligent in watching everyone else's work.  These are trained nurses, LPNs and RNs.  I am an accountant for goodness' sake. 

But I am a mother.  And I will always protect my babies.  

Too many time-outs

So, tonight was one of my awful parenting nights.  I mean just awful. 

We were all having a wonderful time...dancing to music and playing in the living room.  It begins to creep near bath time and we tell Hailey (our 3 year old) that after one more song, we're taking a bath.  Well, the song ends and she gets defiant.  "No, I am not going to take a bath."  "Yes, let's go upstairs." "No, I'm not tired." 

We don't usually allow any talking back so it was straight to time-out for Hailey.  This is when it goes all wrong.  After her 3 minutes in time-out, I explained to her that she had been in time-out for not listening and for arguing with her parents.  Our rule is that she has to say sorry and promise not to do whatever the behavior is anymore.  She refused, "I don't think I will say that."  We explained it several times and she understood what we were asking but still said, "No, I don't think so."  

Back to time-out.  Ear-splitting screaming for 3 minutes.  "You were put in time-out for not listening and for arguing with your parents.  Do you understand?"  "Yes."  "Okay, I love you honey, now let's go upstairs and take a bath." "No.  I'm not really tired." 

This is when I suppose I should have stopped to analyze the situation better but I put her back in time-out for talking back.  No warning, just straight back because it was such an instant defiance.

And the breakdown begins because she's now crying and screaming and kicking and now my husband begins to let me know that I'm being too hard on her.  So then I'm angry for him criticizing me for disciplining Hailey while he's just laying on the couch.  And then, with all this negative energy, I take her out of time-out, no discussion this time, and take her upstairs.  She did not want to so I had to carry her screaming.  We take a bath and she's pretty miserable the whole time.  Still crying.  As I am drying her off, I yell at her "That's enough! Stop this crying!"  But she is crying too hard to stop. 

I look at her and suddenly realize how mad I sound.  How rushed I was in taking her upstairs and doing her bath.  How she's only 3 years old, even though she acts older.  How I am her mommy and she wants unconditional love and doesn't understand why I am scowling or why she's even in trouble. 

I hug her and tell her I love her and I am so sorry.  I tell her she's a sweetie and I just want her to listen and be good.  She said, "I forgive you mama."  Sigh.  My 3 year old has to forgive me. 

Like I said - awful night for my parenting!