Monday, November 25, 2019

13

13 Years.  Sleep deprivation, painful,  fear filled, major change, life altering, heart growing, love filled, devoted, grace giving, life stretching, never a dull moment years.  I'm thankful.  She was surrounded by ALL her siblings, her grandma and C, Mom and Dad,  and Aunt Marcia.  Truly a delightful day.


Monday, November 4, 2019

When last I wrote...

Lillian has started walking and had her little fall.  Here we are in November.  I fell she has completely returned to her norm, though it took time.  She was discharged from PT and the ortho guy on the same day.  She was still limping at that time, but again we are now back to normal.  We tried to have summer vacation in the last three weeks or so before school started.  Lots of firsts for her.

We attended the county fair on special needs day.  She rode a few rides, played a few games, and ate some fair food.  I felt totally blessed the whole day.  It was a great event and I'm thankful she enjoyed herself.

Our next first for Lillian found us at the Indianapolis Zoo.  My sister-in-law joined me and the older girls came as well.  We were gifted admission by  longtime, very dear friends, who just happened to be my pastor and his wife when I was in kindergarten.  (I'm still amazed at how life comes full circle and how God continually uses others to bless us)  They also gifted us with zoo bracelets and even our lunch was gifted to us by my generous sister-in-law.  I was leery, wondering if Lillian would panic or love what we did.  Right off the bat she was in love.  I found myself dissolving into tears as she gasped in awe during the dolphin show.  It could not have been a better day.  (the walking wore her out completely as she was still limping but wow what a day) She also held a stick with bird seed glued to it and allowed birds to feed right out of her hand.  It was an amazing day.

Our next adventure was a  church wide canoe trip.  It was a first for me and the little kids.  We had some struggles and some stressful moments, but the kids seemed to really enjoy themselves for the most part.  It was a very long day and I actually cried when I got home.  I felt I couldn't really even enjoy the time because my stress level was so high.  That's a story for another time.  Not sure canoeing is in my future again, just sayin'. I am thankful for a several friends who shared some of their experiences with me that helped me deal with my struggle that day when it was all said and done.

SO---there's a little summer synopsis.  Recently, we had her routine visit to her pulmonologist.  (lungs)  Everything looks good, however he raised the thought that  longtime use of steroids can cause thinning of bones, so he's ordering a test/scan to take a look.  Don't have a date yet.  I feel a little bit of disappointment or sadness or something that is lurking in my brain. I feel frustrated that meds she needs also can cause bad things.  This is not secret in all things medicine wise...but when you are in a situation that you really have no choice, it's hard on a mom's heart.  It's that time of year again when flu shot hysteria is widespread in both directions.  All I could think of when they were injecting her, literally, was all of the bad things I've read about the dangers of flu shots.  I don't want to get into it all, but just to say it hurts.  It's a struggle and until you walk in a person's shoes whose choices are/can be  disastrous either way, you'll never fully understand.

Can you say 13?  On the 25th, Lillian is turning 13! Keep a watch out for our celebration of 13 years.  Another teenager, another year, we are blessed.


Recent picture on our front porch

Summer Fun!

That's us in the red canoe


Train ride at the zoo


Fun at the fair!

Tuesday, July 9, 2019

Transparency and Walking

Lillian spontaneously got up and walked Sunday after I put her air cast on.  Matt and I were both astounded to say the least.  It's not normal walking, but she is walking very unstably, mostly under her own power.  I'm telling you something internal broke in me when she walked again.  A wash of relief.  I'm certain she will still need therapy, but she's up.

With that, the very next day while I was taking the dog out to do her business, I heard a bit of a scuffle at the front door.  I came around the corner to see Lillian coming out the door and somehow missed seeing her fall right out onto the concrete.  She bloodied the "bad leg" knee pretty good.  Her elbow is bloody, her other leg is scraped up pretty good, so she's struggled a bit more today with walking.  She is still using a wheel chair if we are out for a long period of time.  Her stamina will take time to build. She goes back to the ortho this Thursday. I let her walk, without the cast, just to get into the tub and her leg turned very purple and splotchy, so there will be no more of that until we see them Thursday.  Keep praying, our progress is improving.

She's doing better. I, on the other hand, am struggling daily.  I wish I could put it into words, but I'm not sure I can.  Hold us close as you have in prayer.  It is a comfort to know there are people praying.


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" ...it'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.


Thursday, May 30, 2019

Wearing thin

Depending on where you are reading this, you may or may not know Lillian broke both bones in her left leg on May 17th.(she also had a secondary infection which cleared with antibiotics, but was hard on her)  She is non-weight bearing for four weeks and then we will see if the fractures have healed and then a walking cast if it is.  Tomorrow will be two weeks since the accident and it's been rough.  I have a whole new understanding of SN Mom's who are lifting their "big" kids every day.  Multiple times a day.  I'm blessed that she is potty trained, but that makes for multiple full lifts all day long. Her pain is intermittent and she's emotional off and on.  Since the swelling has gone down in her leg the cast is looking very loose.  We both think they will likely recast when we go back next week.

 I'm tired.  Lillian has had an obsessive/compulsive type of behavior going on for a long time.   I won't discuss the specifics, but it is something I feel only the  Lord can make stop...but it's exhausting to constantly have to watch and correct said behavior. Like...all. the. time. Now that she is bed fast it is MUCH worse.  Aside from her also being afraid for us to be out of the room and being completely homebound. I'm  struggling today.  I'm worn.  She has finally started sleeping through the night again. I'm fighting what ever the bug  she and Ezekiel had ( he is finally over his croup, but still sniffling)   She was casted on the 20th, so we are still 3weeks+ out from possibly going to a walking cast. These last couple of weeks have been reminiscent of the days when she first came home, needing my complete attention and total care.  My mom  got her a wheel chair, (because the drama of trying to attain one through the "process" was a total fail) it arrived yesterday.  I'm hopeful that weather will clear up enough for us to take some walks soon.


Tired.  Heavy hearted.  Worn.  Still looking up.

https://www.youtube.com/watch?v=UUEy8nZvpdM

Friday, February 8, 2019

oh my heart

Grab your Kleenex, I'm giving you the heads up.  I realize I share so little of Lillian other than her medical "stuff".  Maybe it's more than that from time to time, but sometimes it feels like just debriefing.  Not today.

I've been watching this series on Netflix called When calls the Heart.  I read the books in high school and enjoyed them.  Two of my other girls had watched it and thought I'd like it so I jumped in.  It is wholesome, clean, and I can't think of any bad thing to say about it.  Lillian had taken to watching it with me, off and on, but enough to follow along and understand the episodes.

One night, we were watching the young couple in love, who were about to be married and the father of the woman comes along and says very sweet things to her and Lillian throws her hand over her heart, looks back at me and says, "awwww".  Each and every time there was a sweet or tender scene through the episode, she would just continue to throw her hand over her heart and looking back at me saying, "awww".  It was the cutest thing ever.  As the couple starts to tie the knot, she is totally engrossed and just delighted at what is unfolding.  I began to be tearful thinking about the fact that she will NOT experience this type of love story and she won't get married.  The grief of the thoughts overwhelmed me and I began to cry.  I quickly closed the box (as my friend Debbie would say) and shut out that grief as it threatened to sweep me under the tide.  We continued to watch the wedding episode and as it came to a close, she crawled up to me and was saying "awwww" and "talking" in her language of how much she enjoyed it.  As I looked more closely at her face, I realized her cheeks were wet.  I said, "have you been crying?"  and she began to giggle.  "yeeeaaaahhhhh" she said and giggled and giggled and giggled.  I told her it was ok to cry happy tears.  She just hugged me and babbled on and on (I assume) about how much she enjoyed watching that.   I'm telling you, talk about making my heart well up.  It was the sweetest thing EVER!   The grief I was holding back washed away so quickly as I soaked it in.  Oddly enough she wasn't even embarrassed, she told her sisters the next day how the wedding made her cry.  Usually if I tell a story on her she gets embarrassed and doesn't want me to tell it, but this she freely shared on her own.

Anyway, I really wrote this so I could look back on it and never forget it.  This is little girl is such a lover and sweet spirit.  Maybe this didn't need a Kleenex warning, but man did it hug my heart.  Such a touching moment.  She has so many hard stories to tell, it's nice to share a happy one.

Friday, January 11, 2019

Her heart, her feet, her teeth---OH MY

Lillian had her biyearly cardiology visit.  All was well.  He said it will be a few more years before we can spread out her appointments even further, but for now biyearly will be the visits for now just to make sure her scar tissue is growing with her body.  He did tell me her PFO (hole in the heart) is flappy but he doesn't see blood flow through it, so they consider it closed.  Her blood pressure, this time, was considerable high...she is always anxious, so that concerned me because we've never had a high reading and she's always highly anxious.  The doctor did not seem concerned.  Good visit all in all.

Lillian got new braces for her feet because she is growing so well.  Still not on a chart, but her feet are definitely growing bigger than we can seem to keep up with those afo's. She was fitted for them at least 6 weeks ago and we just picked them up.  They are custom made for her feet, I guess that's why it took so long even though it usually only takes a couple weeks.  We also have a new person in that office taking over her care.  She's super nice.  I do miss our previous guy.  She was asking me questions that I just can't remember the answers to, and I'm like can't you look into her chart for notes?I mean my goodness...I do remember a LOT in regard to her care, but that kind of stuff just doesn't always stay with me.  I'm telling you, we have to jump through a whole lot of hoops to get these things new more than yearly and she we do everything they ask and then they ask me to bring her in with them so they can have a picture as proof for the insurance even though her doctor has written a note indicating why she needs new ones.  Super frustrating.

We had another visit for a teeth cleaning and this time she did super amazing.  The hygienist says to me, what's she drinking?  I say, 1 mountain dew a day.  If she drinks anything else, it's a tiny bit of milk.  She then says, well I can see we aren't going to get rid of drinking  mt dew......um no, no we're not.  I actually heard another one of them tell a child not to drink fruit juice. Not don't drink much, just flat out don't drink anything but water because every thing else is bad for you. Come on...I mean really.  Just come on.  I am doubtful that all those people only drink water all day every day.  Aside from that, hello, we are the parent.  ACK, I'm not even going to keep on going.  I just find it aggravating.  My child is very well cared for.  Her mouth has been through so much trauma, none of which we've had control of.  My daughter has so little choice in the realm of her life, if she watns a mt dew every day, she'll get to have one and as my mom would say period dot end.

She is remaining healthy which is awesome.  We've resumed schooling here in the home since Christmas break and she is less than thrilled.  Such is life...tee hee.  She knows she can't get out of it so instead she just refuses to engage.  Today was better than yesterday, we'll just add a little more each day to get back up to speed.

We see her pediatrician for her 12 year check up here at the end of the month and I'm going to share her weight and height changes since switching her to real food in her gtube.  It is AMAZING!!  I still pray and hope she will eventually take to swallowing food.  I get discouraged sometimes but then I look back on things that have happened that I never thought would and remember that God knows my desires and hears my prayers.  So, until next time, be blessed and thanks for taking the time to read about our girl.