Thankful

This is  Scarman. We took him  to Philly and added Laelia’s scars from our last   three major surgeries to Ward’s existing ones. We even added little marks on the back of its feet  for the  tenotomies Lali got when she  was a few months old. Many people have scars, but  Lali knows her  scars are  special because they don’t just point back to a tragedy, but they point forward to hope.

I’m so thankful I have a  conversational little girl who can speak her heart! After an hour and a half talk with her  past her bedtime, I asked if I could write down what she said as we talked. She agreed. (And then begged for her own paper and pen. :))   I wanted to share a perspective of this last week that is so foreign from what I went through that it seems alien. I wanted to share her thoughts on her surgery and her insights. She has an excellent vocabulary for someone her age and a surprising  outlook bordering on the  inspirational.

A few days ago, Saturday I think, I asked her, “Laelia, how did your surgery make you feel?” This face (see below) was her response. I asked her if I could take a picture of her pouty face and she grinned and said, “Yeah!” then went back to  a  pout face. :)

Obviously her surgery was not a pleasant ordeal. After doing some research and getting some insights from different people and their experiences with their kids (or their own experiences), we’re now fairly certain that  Laelia’s epidural didn’t work.

… yeah.

Or at the very least, it  couldn’t have been  100% effective. When one of our friends first suggested this, Charley and I thought back to those days and looked back at our notes. Sure enough we saw a pattern. When the doctors added medicine to her IV things got better. When they gave her Tylenol with Codeine  (either orally or “down under”) things even  improved. But she seemed to be in more pain than I was expecting overall despite that epidural. Back arching, facial contortions that went beyond grimacing, and the inability to even  speak was not, as I believed at the time,  a universal experience for this surgery. I believe now that  we should have  asked the epidural be  removed and regular, intravenus  meds be given in its stead to keep on top of the pain.  

This realization has made me  angry with myself and sick to my stomach.  I was crying to my husband about what Laelia must have  gone through and what she must think. And then it  occured to us (because we’re  slow like that) to ask her!  And during the subsciquent  precious conversation with my little one, I  was taught  what happiness, endurance and hope look like.

***

(My thoughts/words in parentheses as Laelia shares her story.)

The hospital loves me. (Everyone loves you, kiddo.)

Surgery hurts my bones and need to heal. My bones are right here. My surgery was right here. (She only points to her right side; it hurts a little more than the left.)

Hurting a little is okay. Not when it hurts a lot. (True wisdom.)

I want to stand and walk. Kids who stand and walk  get surgery. (Oh really?)

Surgery makes me sad.

(“What made you sad, Laelia?”)

My legs.

I  don’t like things in my nose. (The oxygen.)

I don’t like my medicine.

Takes a long time to poop.

Moving  me  hurts me right here. (Again she points to her hips.)

Doctors picked me up from school. The doctor take me at school.  (I’m not sure on this one since asking clarifying questions always results with the answer, “Yes.” I think she is sad she missed school. And maybe she mixes that thought from when the doctor picked her up to take her into surgery?)

(“After your surgery what made you mad?”)

Mama, I want that my kitty come with me. (We took her stuffed doggie, but not her kitty. I had no idea she felt this way! We immediately got her old stuffed kitty, it’s one of many, and apologized to it.)

I DO NOT like that in my nose. (Oxygen again.) And not in my eyes. (When it fell off her head.)

And, I dunno.

(“Laelia, was there anything that made you happy?”)

(I didn’t expect this list to be  so long! She simply  lit up!)

Mommy and Daddy,  both persons  in the room. When I wake up too both persons.

When they put that (oxygen) on my head and not in my nose. (Okay we get it!)

Um  we talk  about Disenyland.

Go to Disneyland in four weeks. (Sooner, but she’s got four weeks stuck in her head.)

Flying on  the airplanes and seeing clouds and city lights.

My tiger because he goes RAWR!

Surgery means to stand and go and go and go. (I believe this is her sharing her hope.)

Nemo. (She then quoted SEVERAL lines from this burned-in-my-brain-forever movie.)

I watch a lot of TV and then had to blink my eyes like this. Blink blink blink.  I watch TV and my eye hurt.  (That is a lot of TV.)

I love Mama and Daddy and Chelsea and Tiger.

They (hospital staff) give me chocolate pudding.

Helicopters that come and you say Help! Help! and they come and take you and make it okay. (?????????????)

And my blankets.

Red! That color is the favorite. (She got a red blanket and pillow case from the hospital.)

And I can do this! (She grabbed her bar and grinned.)

Dancing.

Um…… I… I is a happy girl. :)

(AND SO SO SO SO SO PRECIOUS! My blessing from God.)

(What more could I be thankful for this Thanksgiving?)

3 Responses to “Thankful”

  1. Bethany says:

    Precious Laelia. I loved her happy list, especially her hope that this surgery will help her to stand and go and go and go. She understands so much for only being three! Please don’t beat yourselves up over the epidural not working; that should have been the responsibility of the nurses and doctors to figure out, and you simply couldn’t have known what was and wasn’t normal. Hopefully, Laelia will forget the pain as time goes on, but even while it’s still so fresh on her mind, her conclusion is that she is a happy girl. :) Give her a big hug from us!

  2. Kristin says:

    I’m still wiping tears as I finish reading this. Tears of joy at Lealia’s ability to communicate her feeling of goodness and happiness, and pain and fear. This is such a good thing to have at such a young age. Tears of sadness because of what you have determined about the epidural. (I cannot begin to tell you how much that makes me ache for you and Charlie) Alexis thanks for being willing to share this with us. Your heart is right there on the page. Not always easy, especially if you would rather curl up in a ball. You are amazing parents, in case no one has told you lately :o) Lealia, you are one beautiful, glorious child of God. Love to you all.

  3. Laura says:

    This makes me sooo happy!!!!! Makes me burst with happiness :)

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