Posts Tagged ‘child with disabilities’

True to Form

As you probably know, Chloe had a major surgery a week and a half ago. And as you also know, we were having some major second thoughts and cold feet in the days leading up to the surgery.

But there is something else to tell about the day before Chloe’s surgery that really helped me regain my focus and purpose for going ahead with surgery.

As I’ve already admitted, the day before surgery, as I was trying to pack and prepare for a week in the hospital, I was an emotional wreck. I had stopped to hide in my bathroom and cry my eyes out several times.

At one point, Zippy randomly pulled out a dvd from a photo shoot of the boys from years ago. In the background of the dvd is a beautiful instrumental song. And the dvd itself is fairly tear-jerking because of the beautiful quotes and sweet photos of my sweet little boys.

While Zippy and I were watching the dvd slideshow, unbeknownst to us, Chloe heard the beautiful music and began to make her way from her bedroom into the TV room to dance to the beautiful music.

I heard a bump in the hallway and turned to look. Chloe had stood up in the doorway of her bedroom and had WALKED, bent at the hips and bent at the knees, all the way down the hall, reaching straight out with both hands to help steady herself with the walls. She was STANDING in the doorway of the TV room and DANCING to the music.


All of this while I was having my is-this-the-right-decision doubts and cry fests! There my girl was on her feet! Working hard, walking in her crouched down position all the way down the hall, reminding me that THIS is why we are doing this surgery! Walking is important to my girl. She wants to walk; she wants to dance. And THIS is WHY this major surgery journey was the right decision.


Doubts? Goodbye.

Fears? Present, but understandable in the face of such a major surgery.

2nd thoughts? Nope. Knowing this surgery was the only way to keep Chloe on her feet made this decision a very clear cut one.

Chloe walking down the hall at just the perfect time? It was SO TRUE-to-FORM for her! Amazingly remarkable at just the right time.


Thank you, Chloe — Thank you, God — for making it very clear.

Forward march!


Mourning Loss

Three weeks ago, our little lives on this humongous planet were altered forever. Three weeks ago today, my dad had a massive stroke. And we were forced to say “Goodbye” to an amazing man — way earlier than we ever imagined.

My dad. You know him as Papa, and he’s a major commenter on this blog. He’s my greatest fan, and always has been. He and my mom have been my cheerleaders, my supporters, my encouragers, my friends. If you’re interested in getting to know him, choose a post on this blog and peruse the comments. You’ll learn quickly how much he adored me and how much he adored Chloe and my boys and my whole family. He was passionate. His comments here always made me smile and made me stand a little taller.

Emotions have always been difficult for Chloe. She has made improvements in recent years and has learned to enjoy some happy emotions of her own and of others. But she still tries to hide from anyone’s strong emotions. They are just too much to process. I think she feels them in a crazy exaggerated way, more than you and me.

She quickly grasped the fact that her Papa was in Heaven; in fact, she sweetly flew one of her stuffed dogs up in the air to show me that she knew where Papa was. Probably she doesn’t really understand the finality of death — but I don’t think I really do either. Maybe we just accept the finality a little bit at a time, and then when we are ready for it…a little bit more.

After joining lots of friends and extended family at Mimi’s house the first day following my dad’s death, Chloe had had enough. While she didn’t experience anyone having a big ol’ ugly cry in front of her, the emotion was clear to her. There was activity, there was laughter, there were tears, there was sadness, there was rejoicing, there were hugs… It was a lot for a little girl who stands ready to explode with emotion even in an everyday situation.

The next day she made it clear to me that she did NOT want to go back to Mimi’s house. She banged and banged and banged her little hand on the floor and signed and yelled, “Home! Home! Home! Home!” I allowed her to stay at home and grieve in her own way. For 2 days she asked to stay at home and in her room where it was quiet and peaceful and predictable…but where she was still very aware of Papa’s passing and of everyone’s emotions, including her own.

Then the next couple of days, she needed to be with the family as we offered visitation for friends and then celebrated my dad’s life the following day (another post for another day!!). A good friend of mine came and accompanied Chloe for those 2 big events, and Chloe did beautifully. To most observers, it appeared that Chloe wasn’t paying attention and was in her own world, but on several occasions, she proved otherwise — she listened, heard, and understood every word spoken.

In the weeks following the service, my mom’s house has been a revolving door for loved ones and friends who have taken good care of us during a very difficult time. And I somehow forgot to be sure that Chloe’s emotional needs were met. We were on the go and at my mom’s house and entertaining and shopping and playing games and loving on family day and night. I dragged Chloe with me nearly everyday without thinking much about it. But finally (thankfully) I realized that I was pushing her way beyond her limits, and she was very, very stressed out.

I slowed our pace and tried to make her (and Zippy who didn’t seem to be quite as stressed) needs my number one priority as I should have done all along. She has remained very fragile and stressed ever since. I think she’s improving and recovering, but I allowed her stress level to get high, and she needs time to rest and recover. I feel terribly about it, but I’m trying to fix it.

I may never know exactly the emotions my girl felt or feels today about her Papa’s death. And as I said, I’m not even sure of my own emotions in all of this. But it has been an important reminder that I need to remember that my little family has limits that need to always be respected. It must be my priority to protect and care for my family at all times — especially in times of great need like we’ve had these past 3 weeks.

I vow to do a better job at it–even in the midst of my own pain– as a mom must do.

Dad would surely leave a comment below telling me not to be so hard on myself…that I did a great job, considering…that he’s thankful for me and so proud of the mother I am. He would type it in all caps and use lots of exclamation points. He would probably remind me how good God is and how special my family is. He would tell me that loves me and possibly quote a scripture or a worship song for good measure. It was just his way.

I’ll consider his comment posted and approved. 🙂

Thanks for your constant approval and praise, Dad. We love you and miss you terribly.  ❤


Papa <3



Yesterday I battled a headache all day.  It wasn’t a terrible headache the whole day, but it got progressively worse throughout the day.  I took as much Excedrin as I could during the day, but the medication didn’t seem to help at all.  By the afternoon, I was miserable with a full-blown migraine and a sore throat.  I was completely out of commission when it came to feeding the kids and doing homework since when I stood up I would have incredible waves of nausea.

Feeling sorry for me yet?  😉

No, I don’t tell this so that I can get sympathy.  I tell it only because I kept thinking yesterday through my headache about Chloe.  What does Chloe do when she has a headache?  She doesn’t tell me it hurts.  She doesn’t tell me she feels sick.  What does she do?

Maybe that’s why she has days when she is weepy all day.  Maybe she has a headache on those days when she lays in her bedroom floor, hardly moving from that one spot.  I don’t know.

How does she behave at school when she has a headache?  She doesn’t tell them that she has an ouch.  Maybe those are the days when she hardly lifts her head off of her desk.  Maybe those are the days when she “acts out” in strange ways.

I know I’ve said it before, but having a nonverbal child is very tricky.  It’s tricky for the ones trying to care for her.

But I was reminded again yesterday how incredibly frustrating it must be for her.  She knows she feels yucky, but she doesn’t know what to do about it.  She can’t pinpoint exactly why she feels that way.  And she doesn’t know what to do to tell me or to tell her teachers that she wants nothing more than to lay down somewhere dark and quiet and be left alone.

That’s what I wanted yesterday.  I was able to communicate my headache to everyone, but I was still miserable.  I can’t imagine if no one even knew I was so miserable.  Everyone would keep talking to me.  Everyone would keep touching me and telling me to sit up.


I pray that God would give me insight into my daughter’s heart and into her emotions.  I pray that her teachers and other caregivers would be sensitive to her needs and to her feelings.  I pray that God would help us know when she doesn’t feel well and help us know exactly what she needs from us on those days.  And I pray that soon Chloe would be better at communicating those things.

Did you know that God really can help me understand Chloe better?  Did you know that God really can give her teachers knowledge and insight even when Chloe can’t communicate?  He can.  And I pray that He does.  I pray that He does everyday!

[photo courtesy of Brand X Pictures]

%d bloggers like this: