Monday, March 2, 2015

Private Duty

*disclaimer- I did not spellcheck or proofread this, read at your own risk*
My heart is heavy tonight.  I will preface this by saying that I know we are blessed to have things as good as we do but sometimes reality just plain stinks.  There are many dealing with much worse but right now this is what we are dealing with and it makes me sad.  For the past 2 or 3 years I have slept in the living room with Anna at night and Kenneth has slept in our bedroom.  This was, of course, not an ideal situation for anyone but 1.  Kenneth snored really loud  2.  My back felt better sleeping in a recliner (old ICU injury) 3.  Being in the same room with Anna gave us all some sense of safety for her and it allowed me to be near if her feeding pump had issues or if she needed to get up for something or if she got choked or had a seizure of whatever scenario you want to choose.  It was a weird arrangement but it was what we had to do at the time to get through.  Fast forward to about 6-8 weeks ago.  Kenneth and I embarked on a journey to better health.  We started a Beachbody program called The 21 Day Fix.  We both were feeling so much better on the program and somehow Kenneth stopped snoring.  This was something even sinus surgery had not been able to accomplish.  Then my back stopped hurting.  Suddenly it looked as if us sleeping in the same room again might become a possibility.  I waited a couple of weeks to make sure the changes would stick and they did.  We made the decision at that time to move Anna to her room at night and move me back into the bedroom.  Kenneth and I desperately want to be more husband and wife and less of just roommates.  There is a startling statistic about the divorce rate in marriages when there is a special needs child in the home.  We do not want to ever be this statistic.  We put Anna in the bedroom closest to us which meant also moving Gabe into a different room.  It was a pain but we thought it was well worth the work.  We bought a baby monitor and explained to Anna that it was a "big girl monitor" and that if she needed anything in the night all she had to do was talk to me on the monitor.  She has been doing great about telling me when she needs to get up to go to the bathroom or just needs me for whatever.  She cannot roll the pole with her feeds with her without tipping it over, this is why she needs my help.  She is fed continuously via her Gtube overnight.  Anyway, this arrangement seemed like a great idea.  It is except for one thing, I'm not sleeping.  I'm up on average of 6 times per night because she needs me or because I hear her and have to get up to check on her.  Yes, Kenneth would get up but he doesn't hear her.  He sleeps, well, like a man.  Heavily.  I could wake him up but I'm already up and I don't see the point in us both being up.  I cannot turn the monitor off.  Anna has no other way to get me if she needs me.  So here I am, stuck, feeling like I need to chose between my child and my husband.  Either I sleep in the bed with him and get no rest or I sleep with her and neglect him.  Neither option is appealing.  My lack of sleep is weighing on everyone.  I've become someone I don't like.  I have lost my patience more times than I care to admit over the most trivial things.  I've lost it with Kenneth and with Carly and neither deserved it.  Then I end up feeling even worse.  My work is suffering.  I'm not doing much good in very many places right now.  So after years of doing this on our own we are having to ask for help.  We are on the path to getting a private duty nurse to sit with Anna every night (at least during the week).  The nurse will allow me to turn off the baby monitor and sleep without the worry of what Anna needs at night.  So why is my heart so heavy about this?  The rational part of me knows this is best.  It knows that as things stand right now I am not any good to anyone.  The other part of me is heartbroken that I can't take care of my own child.  That part of me feels selfish that I am choosing sleep over caring for her.  To get the nursing process started I have to take Anna to see our pediatrician tomorrow.  There has to be a visit within the past 30 days for nursing to begin.  So I told Anna I am taking her to see Dr Goff tomorrow.  She of course asked why.  I thought about skirting the issue but decided she would be there tomorrow at the appointment and would clearly see a nurse at our house so I needed to just be honest with her.  I explained to her why we needed a nurse.  I explained that as much as I want to be able to do everything for her I can't and I am tired.  I explained that the nurse would help mommy to get some sleep so that mommy wouldn't be so crabby all of the time.  Her response was that she just wants mommy to do it.  It broke my heart.  I don't ever want her to think I don't love her enough to take care of her.  I don't want her to think she wasn't important enough for me to care for.  I don't want her to feel that I chose sleep over her. In her 7 year old mind though I can't imagine that she doesn't feel this way and that breaks my heart.  And so my heart is heavy but I am going to carry on because I have to do what is right for all of us, not just Anna, and my family deserves all of me, not just the tiny pieces they have been getting.

1 comment:

  1. I'm so glad that Anna can talk.... that will help you know she is being well taken care of while you sleep. It is so hard to give over care of our children to a nurse, but it is so helpful and such a blessing from God. Hugs and prayers.