Saturday, April 10, 2021

Milestones to me

 Today, 14 years and almost five months later, Lillian is moving OUT of her car seat.  I know it doesn't seem all that life changing to most...but it is a huge milestone to me.  I even have the tiniest anxiety about it...BUT...it's time.  Her legs hang out way over her booster and it's just a safer place for her to sit in a normal seat.  

Good bye booster.  Hello regular seat.  Really hard to believe.....

Sunday, March 28, 2021

Celebration and Love

 Today we celebrated one of my grand daughters' first birthday.  Time certainly flies.  Seems even faster than my own kids growing up.  It was immediate family and a few family friends.  It was a joyful celebration.  Hazel Basil, as we affectionately call her, is a lover and cuddler.  She is just starting to toddle around but far prefers to be held.  


As I sat visiting with my lifelong best friend, we were catching up on my former church family and how folks were getting along.  She shared about a gentlemen who has a special needs daughter.  I remember her through all my growing up years.  Since his wife passed, he has been mostly caring for her, she was fairly independent.  Michelle shared with us today that she developed Alzheimers and her father had to put her in a nursing home and how broken hearted he is over it.  My mind collapsed, crumpling like a wadded up piece of paper.  As the news sank in, the tears started to overtake me and my heart broke for his. I can't really explain it any other way.  I  tried to regain composure, but it was hard.  Tears fall, as I try to write about it.  My chocolate birthday cake turned to sand in my mouth.  (and I love chocolate cake, friends).  

Life with a special needs child is tough.  It's heart breaking, difficult, with never ending challenges.  It's joy filled, tear stained, and blessed beyond measure.  

I'm a lot a bit wrecked tonight, because love hurts sometimes and I'm hurting for a daddy who is hurting for his little girl.

She loved the dukes of hazard, I hope she still does and I hope it still brings her joy.

Lillian insisted on taking a walk today, even though  there was a cold wind trying to blow us off the sidewalk.  She still wanted to walk. So we did.   I sit here, listening to Lillian "scare" her dad as he gets to her room to get her to bed.  Hold on to the momemts.....they pass quickly by.

Tuesday, January 26, 2021

Pediatrician Checks In

 Lillian had her 14 year well child appointment last week.  She had gained six pounds in a year and is just an inch shy of five feet tall.  She had a good visit, but I did ask for a blood draw because she has complained about being tired for quite some time.  I cried a little as we discussed the changes she's going through and some of the possible scenarios we should consider. She did pretty well with the blood draw, but it's heart wrenching to actually hear her say through tears, "I'm  'care".  


Did get the call today, she does have a very low vitamin D level so we'll start a supplement for that.  Her hemaglobin was good, and she had no corona antibodies.  Her metabolic panel was also fine.  

As she sat there on the table, legs crossed, hands in her lap, waiting I was struck by how grown up she is.  I nearly started to cry again.  When she was a year old and we had professional pictures made, I cried while previewing the photos because, first I was happy she had made it to a year old.  Second my heart was gripped that these might be the only photographic memories I would have of her life.  This day, at 14, I'm just grateful and in awe.  So, I said, can I take your picture and she said, "yea".  There is so much captured in that one moment.  



  So, if you're reading to this point,  this might resonate with you...we weren't given what we prayed for...ie a healthy child.  As we prayed in those early days and the years since we haven't been granted the desires of our hearts for her development and health issues.  We HAVE  been given life, we've seen miracles, we've seen prayers answered in other ways.  I've grown in the fruits of the spirit and closer and closer to my Strength and Shield.  Your story, your faith WILL touch others in ways you won't even know.  You are strong and this is not over until HE says it is.  

Heart Dr Checks In

 WHAT A DAY!  I felt confident that we would have a great cardiology appt for Lillian and I was right.  Her heart looks great and he doesn't foresee her ever needing heart repair to her original repair.  Since she doesn't grow in super huge leaps, it's actually been a good thing in regards to her heart defect.  Now, I move on to story time....I left town about half an hour earlier than needed and had been on 65 for about 25 minutes when we came to a dead stop.  There was a crash ahead and there was no telling how long we'd be sitting.  After 25-30 cars ahead and behind me made illegal uturns, I called the dr to tell them what was going on.They stated I could be 15 minutes late with no problem. I, then, tried to make an illegal uturn myself, only to be caught by a state policeman.  Now, mind you, I thought, these other people were not making the best decision, but I was also starting to feel desperate.  So, I turned myself around and was just settling in for the wait when the police officer, who was young enough to be my son, tapped on my window. He proceeded to chew me out, very kindly, about my "almost fatal" decision to make a uturn.  I told him I agreed completely and then he continued to lecture me about almost killing ourselves.  He said he wasn't going to give me a ticket and I told him I he should because I deserved it.  He finally proceeded on his way and I felt like a total idiot.  We arrive at the dr office and I am busting tale to get in there, my time read exactly 15 minutes over our appointment time.  We walk into the office and the front desk/medical assistant was ruder to me than I've ever encountered in my life.  I was biting back the tears.  She continued to talk to me very rudely to the point, where my old fleshy side nearly chucked that clipboard right back at her.  I told her I called and she was so so rude...I sat there on the seat thinking be kind to your enemy, don't return evil for evil.  She took Lillian back and was a different person toward her and I finally made it to the bathroom and cried.   


The doctor did say he was sorry for my trip issues and I said, well I got chewed out by a cop and your receptionist was not kind to me at all.  He said he was sorry for that too.  It was a rough day for me, stressful, I should say.  I just hope there was no injury to the people involved in the wreck.   

Also, we had a good report with her pulmonologist in December.

Never a dull moment.  

Saturday, December 19, 2020

Dental visit recap

Thursday, Lillian had her quarterly dental appointment.  It went terribly.  She was screaming, crying, fighting me, tell me "no tah" which means no talk.  After what seemed like FOREVER..much longer than it should have been, her hygienest looked at me and said, "this is the hardest time I've ever had cleaning her teeth." She said, "you know when you told me you had to fight her to brush her teeth?" I said, yes.  She said " I now understand what you meant".  I think, perhaps, she thought I was exaggerating.  I was not.After it was over, I said I needed medication and she said well, you don't have to fight her and I was said oh yes I do. I feel very shaken, physically...internally.  It's hard to put into words.


  Anyway, we left and decided we would grab some fast food before finishing the errands I had to do in town.  As we go in, Lillian has pulled off her mask .  She and her older sister are fussing about it and I haven't even had a chance to get it back on her and the lady behind the plexy glass is shoving a mask at me urgently, loudly telling me she needs a mask (which can be seen in Lillian's hand).  Without even thinking I barked at the woman that she had a mask, she has special needs and then proceeded to replace the mask, take a breath and place our order.  When we sat down, I felt regret.  I didn't mean to sound snippy, but I'm sure I did.  Not only was I still in recovery mode from the dentist, I was probably a little hangry, and if you read my last post, you know I'm not in a great mental state. So, lady in LJS, if you happen to read this, I'm sorry.  It wasn't you,  it was me and I'm sorry.  I hope my extra kindness after our initial meeting showed you I'm not an evil hearted person. Ironically, she served us our drinks, us unmasked at a table, no plexy glass, closer than when we arrived at the counter. Think about that for a minute...


She will see her pulmonologist this week for a routine visit and she's due for her cardiologist as well.  I expect nothing new.  Dr. Pulmo will probably be my last post before Christmas.  



Thursday, December 17, 2020

When it's hard to be grateful for "normal"

 December has been a hard month for me.  Emotionally, I've been kind of a mess.  Perhaps it is indeed "COVID fatigue" or maybe not.  Maybe it's just the circumstances of life feel heavier.  I'm not sure.  Tears are readily available  these days.  As the mother of five daughters, I've experience puberty many times with girls and all the changes that come along.  When it comes to Lillian, I've heard a variety of stories from doctors and nurses stating puberty comes sooner for kids with special needs or she's so small I don't expect puberty until much later.  Lillian is walking thru this new season.  I am sad with a capital S.  It is so dreadfully unfair that she has to walk through this and of ALL things why does this have to be her "normal"  for her hard fought life?  The irony of the whole thing is not lost on me.  The prayers, the days, the nights. I've longed for something "normal".  A lump is gathered in my throat and tears are leaking out.  I never liked that my other girls had to venture these waters either, but you know, it's a part of being a woman and eventually, God willing, it allows them to experience motherhood.  The dagger slides deeper....or that's how it feels at least.   The body grows and changes and her mind doesn't.  It's not fair.  It hurts.  Choices are not mine.  It's hard.  That's all.  

So, if you're reading this and are walking through a hard time, I'll leave you with this and I'll keep looking up.

Isaiah 43:2

When you go through deep waters,
    I will be with you.
When you go through rivers of difficulty,
    you will not drown.
When you walk through the fire of oppression,
    you will not be burned up;
    the flames will not consume you.


Wednesday, November 25, 2020

HAPPY 14TH BIRTHDAY



 I stand in awe at the grace and mercy of God.  14 years we've been given.  The years have not passed by quickly.  The days have been long and sometimes weary.  BUT!!!  Look, look what the Lord has done.  

I could look at 14 years and see all the pain, all the hardship, all the tears.

Instead, I see beauty, I see perseverance, I see strength, I see hope, I see goodness, I see compassion,  I see unwavering, unfailing, never ending LOVE.  

Happy Birthday!