Tuesday, June 16, 2009

My Elephants - #2 and the lake

Wow, okay! Elise. So if you've met her you will never forget her.

Elise is my first introduction to girls. Ironically, she is bigger than life and still doesn't fit the whole "girl" mold. Maybe God knew I needed something bigger to fear and enjoy. I definitely got a closer look at God through her, and let me tell you, He is more than you ever could imagine!

Well, I had an eventful pregnancy. We passed all the screenings and I had 2 ultra sounds with her. One to confirm the pregnancy, and one to check her sex and make sure she was growing...in retrospect, they should have caught some stuff...knowing what I know now, however, I am thankful that they dropped the ball. The knowledge is different with a baby in your arms than as a bundle of medical theory. I had preterm labor. I got to spend time in the hospital and I was on medicine and bedrest to keep her in to cook. I spent time high as a kite and trapped on the sofa watching movies...not a great time...whatever you may think while at work, there are worse things.

The short version is that they thought everything was normal. They were wrong.

Elise has Down Syndrome. They didn't know that. She also had some serious heart defects. They didn't know that either.

When she was born, she came out scowling at being ripped out. She was ANGRY at being born, and ran her lip all out. She didn't look like her brother. BUT maybe it was because she was a girl...my brain knew better, but I didn't want to think any further. But when the doctor came to chat with us, I wasn't surprised...devastated, but not surprised.

Me being me, I did homework...ALL the homework! I read everything. I mourned the normal. I didn't realizw how much I counted on normal. I never made plans for my kids...I looked forward to meeting them and seeing what they would become, but I saw a truly limitless future for them. Their opportunities were to be lessened ONLY by their choices.

I finally accepted it. Just in time to discover that she would need heart surgery. She was in Cardiac Failure within 3 months. She was scheduled for open heart surgery within 3 and 1/2. During the open heart surgery, we discovered just how much needed to be repaired. She had more and worse holes in her heart than we knew, she was operating with half a heart. It was repaired. We were blessed. Because of the surgery, she was put on a diuretic. She had a couple of runny pants and was dehydrated and turned blue. She was rushed to the emergency room. That day, we learned that she had virtually no platelets. The platelets are the clotting agents in the blood. It was an indicator for cancer. She was less than 5 months old and was in a pre-cancerous condition. It was coming, we just didn't know when.

We watched it for a full year. She was diagnosed with the pre-cancerous conditon March 6, 2003. She was diagnosed with AML leukemia February 26, 2004. She never "presented" in her bone marrow. She presented in the form of "liquid tumors" in her sinuses. If we had not caught it, it was weeks away from her optic nerve. If she had not had the heart problems and the corresponding medication, we would not have had the blue baby incident. If we had not had the blue baby incident, we would not have known to watch for the cancer. If we had not been watching the cancer, she probably would have lost her eyesight and her cancer would have been a lot further along. The sinuses can regenerate, the optic nerve does not.

AML is an aggressive form of leukemia. Typical kids who get this have a less than 30% survival rate. Kids with Down Syndrome have a better than 98% survival rate. In less than a year, we went from struggling with the Downs, to "YES! We have Downs!!!"

We are almost 5 years from the end of her chemo, it will be official in September. The mark from being in remission. YAY, GOD!!! The 5 year mark is a big mark!

Because of the Chemo, she had a internal line port for the chemo to be delivered. Because of the line, Elise did not take a true bath for 8 months. She wasn't a big fan of baths to begin with, and after dodging the bullet for so long made baths a nightmare. We are only just to the point that she realizes baths CAN be fun!

We went to the lake today and played on my parents boat. I actually talked her into going tubing (VERY slowly). We got thrown off, she and I. Shockingly, she got back in the lake to swim before we left. What a change. That's my girl though. You can't buck that girl off of life! She has lived with more gusto than anyone I have ever met. She lives with a joy that is unquenchable. She dances and parties for no other reason than the opportunity to live life. Everything is a party for her! I feel humbled to have the opportunity to live with her. She has given to me, more than I could have imagined.

I still have sad moments when I am tired. I was hit pretty hard when a girl at church who was younger than Elise went to the front of the church and gave her profession of faith. I honestly forget that she isn't where she should be.

Elise is tiny for her age. She is 6. She is head and shoulders shorter than her peers. She is probably on a 2 to 3 year old level of speech and thought. She can do more than a typical 2 year old which is what leads to problems...many scrapes get short-circuited by physical limitations...many of which she doesn't have. (We refer to it as the good idea/bad idea factor.) I am thankful for every milestone she hits...there are a lot of "Wow, good job, don't ever do that again!" moments where I am thankful for the what was done, but not happy with the consequences... :)

I look forward to seeing what she ends up accomplishing. I am sure it will be more than anyone will expect. She is a carrier for miracles...so I am beginning to recognized them more quickly! There are more daily miracles than I could have ever fathomed...for which I am ever more thankful...

Boring is good. Boring is a miracle...but you don't get that until you get to dance through the valley of the shadows.

I look forward to seeing what else she has to teach me.

I read somewhere that the term "touched in the head" (defined as crazy or not all there) was based on the belief that the imperfect came as a protection. That those who were not whole had been touched by God without the "veil" drawn between...and the consequence was a barrier between them and everybody else. We could not comprehend God in all his glory and the intimacy would overwhelm us...so those who could and had, were kept separate from others by a disability...There are many days that I absolutely believe that! Elise sees God more purely than the rest of us....I look forward to seeing how she professes her faith...I am sure it will be joyful and a throw-down party! YAY, God!

4 comments:

  1. Alright, I'm tearing up first thing in the morning. That was beautiful Tiff. Thanks for sharing this with everyone!

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  2. Hey Tiffany! It's Sarah's little sister, Meagan. I enjoyed so much reading this post! I am so excited that you have joined to blogging world!

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  3. This is such a heart-warming story about your daughter's struggles. She has been thru a lot to be so young; I am so happy she is doing so well now. God is indeed a God of miracles.
    Our daughter had Downs also. Thankfully, she was very healthy all her life. She has just recently gone on to be with Jesus. We miss her so much.
    I do believe that God gives these very special children to the parents that He knows will give them the best life possible.
    She taught us so much, esp. me.
    Rhonda was the most gentle and caring child.
    She didn't want much or demand things most children do. Only to be loved and to love back.
    I look forward to reading your blogs about your special little Downsy.

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  4. I enjoyed reading all the ways that God has cared for your daughter. I think my daughter would enjoy spending time with her.

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