Wednesday, June 26, 2019

Definitely NOT the Mother of the Year

If you've been with us for a while you know I often refer to myself as the MOTY.  Each of those times I'm actually referring to the failures and mishaps that occur in my daily care of Lillian.  It's a joke,  (mostly)  because in those moments when awful things occur at my hand, I think to myself, "not winning that title this year"'s my levity, I guess.  Because, HEY YOU, yes, you...that mom/dad/human being out there, we ALL fail.  Things happen.  Stuff we don't plan and obviously don't want to do, happen. Gotta give yourself some grace, some levity.  It's hard when you're a mom tending your children.  In ALL the stages (ask me how I know ;) ) Well, that's me anyway.

Monday, my MOTY status was high.  BIG TIME HIGH.  I was frustrated.  My voice was raised....nearly yelling, but not quite.  I allowed frustration to overwhelm and take over.  Later, there were tears and shaking and apologies and forgiveness.  However, I heaved and wept myself in bed that evening.  Feeling ashamed, sad, angry at myself and the situation.  Although I thought I had no expectations, I certainly did.  I wanted to be rid of the bedside commode in the living room.  I wanted to be rid of the wheelchair taking up space.  I wanted rest for my body that is physically aching from the lifting.  I knew life wouldn't get back to our normal right away, but I certainly thought things would be A LOT closer.   Dead, dead wrong.   I started to think back on the days when she was newly home from the hospital and all the therapies started pretty quickly in our home.  She would cry (with no sound) but definitely crying through her therapies.  The had to push her to do things she didn't like and I'm sure were uncomfortable and I had to sit by, watch, encourage, and feel like I was the worse mother for letting it take place, yet knowing it had to.  So, here I am, again, right back in that place.  Mentally and physically exhausted.

Tuesday morning I got a phone call from a church friend.  Someone who was knowledgeable and experienced in broken bones.  She shared with me the do's and don'ts and the things I should expect.  I cried to her as I shared my struggle with not knowing what was too much and not enough and she was a soothing balm to my spirit.

I'm still aching a bit, internally, but this too shall pass and I know the Lord is near to me.

So, two days since cast removal, we are pretty much in the same state as we were with the cast.  She won't bear weight and I'm hopeful and praying for better days ahead, no matte when they might be.  Hopefully sooner than later, though!

"The Lord is near to the brokenhearted. And saves those who are crushed in spirit" Psalm 34:18

Monday, June 24, 2019

Not what I thought.

I really tried to go in this afternoon with no expectations.  I have prayed for healing, but was prepared for whatever outcome.  In my head, I thought they would be putting on a walking boot/cast.  Nope, this is a strange support that has a tiny patch on the bottom of her foot and to things that go up her leg.  The day I  make her keep her tablet at home is the day we wind up waiting for eternity in the office.   The xray says she's healing and  the doctor says she's supposed to take it easy the next couple of weeks.  I say, like normal daily living, he keeps saying take it easy.  I'm not sure I feel that's very specific.  Anyway, I didn't take a shoe, didn't know she'd need one.  (I had boot on the brain)

We just got home, she refuses to even attempt standing, let alone walking.  I'm worried she's forgotten how to walk.  I knew it would take a while to get back to "normal" but I didn't expect total refusal to bear weight.  I'm on the verge of tears, she's in constant tears because she doesn't want to stand and I can't understand WHAT IN THE WORLD SHE IS SAYING!!!

Help us Lord.   I've called in big sister Bethany to see if she can encourage....Help us Lord.

Friday, June 7, 2019

Life in the slow lane.

Yep, that's us.  We live slow. Life with a medically fragile, special needs child  has slowed down our life considerably.  I didn't think it was possible, really, to get slower, but indeed it does.   It seems this year has come at us  full force with struggle, without respite in between.  Injuries, illness, and vehicle problems, and now more injuries.

When Lillian came home from the hospital at birth, I was up, without sleep, nearly 24 hours a day. I'm not exaggerating in the least.  She vomited constantly, her feedings were around the clock and machines needed tending.  I did it.  I didn't have a choice.  Many people say, I just don't know how you do it.  I wasn't given the choice.  I love her and I did what was necessary to take care of her.  Sleep was just not part of that chapter of my life.

Over the years, sickness has interrupted my sleep, I found I could live with out it...I even feared, at one time, that I had made sleep a god.  All I longed to do was sleep.

Here we are and sleep or rather the lack there of is making me a crazy person.  I keep telling myself , " hey, you went through all those years without sleeping, deal with it" but I'm struggling.  More nights than not she is staying awake for hours on end.  Last night was one of those.  This has been going on for a few weeks before her accident.  I always felt really lucky that she slept and slept well, but now she's not and I have no idea what to do.  I stripped away her mt dew...didn't help.  I ramped up her sensory input...nothing seems to be helping.  I'm tired.  Pray for sleep for her and me.  This morning, she lay in the other room crying for me pitifully, and I laid in my bed and cried.  Eventually , Matt got up and went to her, but it was very close to time for him to go to work by that point. And honestly, I don't know how she's keeping herself awake...she MUST be sleepy.

Yesterday she had a follow up appointment for her leg.  He said the cast looked good and we go back on the 24th.  They will remove it, rexray, and then we'll see where we go from there.  She also rolled herself right off the couch yesterday and I think I got her scooped up before she stood up on it, but that's what she tried to do.

We have been blessed with a few surprise dinner meals from some sweet friends and I couldn't be more grateful.  I'm exhausted mentally, emotionally , and physically and cooking is the last thing I have on my mind at 5 pm.  I'm grateful  Madeline is home for the moment to help out.  I'm grateful that there is an end in sight for this cast and prayerfully and end to these sleepless nights.