Tuesday, January 31, 2012

Meet Elise's Brothers! (and other random pics)

I know the title of my blog is “Life With Elise”, but her life also involves her 2 brothers. I haven’t written much about them lately, so I just wanted to post a few pics of all 3 kids over the last few months. Lane (9) and Ty (3) love their sister, Elise. Neither of them have memories without her in them, and they share in the fun and laughter that we all enjoy here in the Haden house! Get to know them a little better…


(Better known as Lane Brain)

Lane is our science/math whiz. He recently won Grand Prize in the Science Fair. He is headed to Regionals!

Lane loves his dog, Tanner.

Lane trying out his new rollerblades Christmas morning. Just call him Apolo.

Astronomy is one of Lane’s greatest loves...

(Not sure what he's looking at in the daylight!)

Lane can’t wait to make his annual Gingerbread house, just so he can eat it!

My favorite 9-year-old...

Lane and I at the annual “Rudolph Run”. It’s great to do something special just with Lane (even if it’s cold and we have to run…)!


(Better known as Ty-Bo)

Ty is a silly boy and loves Spiderman.

Painting in the kitchen with Mama.

Am I a mean mom to take a picture of this instead of rescuing him?

(Don’t answer that!)

On special days, we have lunch in his tent and read books. It doesn’t get any better than that...

Ty in “isolation”. Who knows what he did wrong, but he sure looks sorry!

Mr. Ty getting his hair cut at Sport Clips. We have always gone to the kiddie salons around town, but I discovered at Sport Clips we never have to wait, I like the way they do the kids’ hair, and my kids never want to play the video games or watch the movies in those other salons anyway!

Every Thursday, Ty and I go to the library for Story Time. I did this with Lane when he was little, and will forever treasure these memories.

Walking on train tracks after Story Time. Ty loves trains and notices tracks everywhere we go.

Ty doing the Tebow…

Our family tradition of the Jesse Tree before Christmas.

(As you can see, Ty is really interested in the devotional!)

Kind of Random

The boys love their PawPaw Goerner.

Elise was enjoying the cold weather while looking at neighborhood lights.

Bubba and Sissy checking out a snowman.

Elise has friends from all over! Here she is with a colleague of my dad’s from Nigeria.

Chris hung twinkling lights above Elise’s bed. I know the neighbors must look in her room at night and wonder what in the world is going on!

"Where’s Waldo?"

The reason I included these pictures of my mom, me, my cousin, Rachelle, and my Aunt Sissy is that Elise snuck in. Look over my mom’s shoulder. She’s such a picture hog!

Of course, we can’t have a nice, normal picture without following it up with this...

All 3 kids sitting around with GiGi and Poppy...

Elise waiting on the bus before school. I love these pants on her!

I wonder what they were waiting for...

Special night of eating in the living room while watching a movie. I have memories of doing this with my brother growing up.

Elise before school. I love purple on her, and her purple glitter shoes always get her compliments!

Thank you for finding out more about our family!

Children are a heritage from the Lord, offspring a reward from Him.

(Psalm 127:3)

Wednesday, January 25, 2012

Keeping Elise

When Elise and I are out together in public, there’s one main question that is usually asked. In various forms of polite inquiry, people want to know -- what happened to her?

I took Elise to get her haircut today, and then decided to swing on over to get my eyebrows waxed. I usually wouldn’t take her along for such an errand, but if I wait too long to do this, I begin to look like Brooke Shields in the 80s. Not a good look in 2012. I wheeled her to a room in the back of the salon, and laid down on the table to wait for the lady to come in and inflict some serious pain on my eyebrows. Elise was in the middle of an adorable session of “how many times can I hit myself in the jaw in under a minute?” When the woman came in, I introduced her to Elise and told her that she was ok, and that she just liked to hit herself. There’s really no better way of putting it in a situation like that. As the lady was spreading on wax and peeling off what felt like my eyelid skin, she began to ask me questions about Elise. I welcome the curiosity, and love answering anything regarding her. Well, this question and answer session took an interesting turn. After hearing a brief summary of Elise’s story, she asked me, “You didn’t want an abortion?” In an attempt to end this painful and awkward moment, I told her no, that I don’t believe in abortion. She replied with “Oh, religion.” I politely let her know that God created Elise and that we wanted her regardless of her issues.

This is a common misconception. Religion didn’t hold me back against something that I otherwise would have wanted to do. I wanted her. I yearned for her. There isn’t anything that the doctors could have told me that could have changed that. A mother craves her child. Being a Christian, not mere religion, carefully guides my decisions led by the fruits of the Holy Spirit.
Galatians 5:22–23
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law.

Believe it or not, this was not the first time I was asked this question. Early on in her life, I began to realize that there were people who looked at Elise and saw a child who should never have been born. (Thankfully, this attitude seems to be in the minority). This was introduced to me at a doctor’s appointment for myself. I was in the examination room with Elise beside me in her little wheelchair. She was around 3-years-old. The doctor herself was pregnant, so she was especially interested in what had happened to Elise. After explaining the whole story to her with the fact that I had knowledge of the brain injury while pregnant, she asked me with much concern, “I’m curious -- since you were blessed to know in your second trimester that Elise was going to have these problems, why didn’t you abort her?”

Knot in throat.
Stomach punch.
Heart racing.

I was so caught off guard that all I could muster was, “I don’t believe in abortion. I’m a Christian.” My thoughts were all jumbled up, still confused as to whether she actually just asked me that. Doctor or not, that little girl sitting next to her in that very room was my baby. She was my baby at conception. She was my baby in the 1st, 2nd, and 3rd trimesters. She was my baby as soon as she took her first breath. She was still my baby -- brain injured or not.

I have held on to the memory of the first time that the subject of abortion was approached. I was lying on the table with a belly covered in jelly. The ultrasound had confirmed that Elise wasn’t getting any better. It was final. She definitely had significant brain injury. Not the worst they had seen, but close. I had prepared myself for the news, and I held my breath as my gaze searched the darkened room to find my mom. She was doing a good job of faking composure, and that helped.

My doctor, looking a bit uneasy, got right to the chase. He asked if I wanted to abort Elise or keep her, as if she was a puppy I was deciding on. “Well, she pees on the carpet, but she’s so darn cute. I think I’ll keep her!”

Not that it’s some defining moment that caused me worry and angst. It was quite the opposite. When I was given the choice for her to live or die, the ONLY choice I had was for her to live. It was a quick response that I gave and it was never brought up again. It was kind of an awkward moment, an experience that is hard to explain. It was never a dilemma of whether or not to “keep” Elise. She already had a name given to her by me, and a soul given to her by God. As a matter of fact, that one issue was the easiest decision that I have ever had to make regarding Elise.

Life. I continued with her life. I would go through and finish what God considered good enough to start in the first place.
Sure, aborting Elise would have meant that I might have had several more children by now, maybe even another girl. Aborting Elise would mean that the stress and anxiety that has come with her life would never have happened. Aborting Elise would mean that my family would not have to shoulder the burdens and hurt that accompany raising a child with brain injury.

Most importantly, though, -- Aborting Elise would have taken away Elise.

Elise- the little girl that I hear laughing her head off in her room as I type these words.
Elise- my daughter who enjoys baths, playing with her vibrating butterfly, and the feeling of wind in her face.
Elise- who can sit perfectly still in my lap with her hand on my mouth and jaw, feeling the vibrations of my voice, and even ask for more by vocalizing.

Keeping Elise meant that we trusted what God had planned for her life and ours.
Keeping Elise meant that we were willing to face the good, the bad, and the ugly, while still finding joy in her life.
Keeping Elise meant that we believed God’s word when it was said:

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that fully well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be" (Psalm 139:13-16).
Not only do I believe that Elise should, in fact, have been born, I also know that anyone who questions that fails to see her as I do. People often lose sight of the fact that Elise is a real person. She isn’t just a brain injury. When we are at a party, at church, or on the sidelines at Lane’s soccer game, and Elise starts giggling, people’s reactions are sincerely surprised. They say, “Look! She’s laughing! She’s smiling! Look!!!” I understand their shock and I appreciate their excitement. After all, they don’t live with her and see all that she can do. It always reminds me of the Frankenstein movie where Dr. Frankenstein yells, “It’s Alive!!!!” People generally don’t see that she is far more complex than it seems at first sight. I love it when others see her emotions because it shows a more human side of her, not just the girl sitting in her wheelchair with a far away look in her eyes that is usually the case.

I once had a friend who was facing a pregnancy with a baby who was developing with obvious problems. Her baby’s outcome was very shaky, and the parents were beside themselves. One morning at church, our Sunday school class prayed over this family and asked God for healing and strength for this mom and dad. Afterward, she sought me out and fell to pieces telling me that she just couldn’t imagine dealing with what we deal with every day. She was mortified at the thought of facing a future similar to ours. She didn’t think that she had the ability to cope and was truly desperate. I reassured her that whatever God’s plan was for her baby, she and her husband would rise to the occasion. Being a fellow believer in Christ gave me the confidence to assure her of the help He would provide. It saddens me to know that there are so many other families like that who are facing the same sort of situation that don’t have the gift of faith and God’s grace to get them through. Trusting in the Lord makes these situations so much easier on moms and dads that are desperately clinging to their own sanity while coming to terms with their future with a special needs child.
Some think it is selfish to bring a child into the world when they can’t live it fully like you or I. Others see it as cruel to give her life when it will be full of struggles. And still others see our lives as something that could have been avoided, resulting in an easier or happier existence. Implying that I am in some way to blame for her being in this condition can be shocking and hurtful. Thank goodness I have only come across this point of view a handful of times! I have written before of the heavy burden of responsibility I feel for Elise’s care, but I have never, even for one second, felt any personal fault for her being alive. You have to understand that for people like me, abortion is the taking of an innocent life by someone who doesn’t hold the authority to make that decision. It is that simple. Just as there are others who will say emphatically that it’s not, I say it is. There’s no two ways about it. I am thankful for this conviction, because it spared me from the trouble of having to make a decision for another life based on feelings, fairness, or a false sense of fixing something that is broken.

We didn’t use any extraordinary means to save her life. We allowed nature to take its course. She was born, and now she lives. She will die when God is ready to take her. What an awesome feeling to put that responsibility squarely in His hands!
Elise is most definitely a child of God, flaws and all. I’m heartbroken that she has to feel pain, and that she’ll never have anything close to a normal intelligence. I hate it that she can’t enjoy the beauty of this world and run through the house naked after a bath. No matter what brings me to my knees about Elise’s condition, I am secure in the knowledge that if nothing else, she deserves to live. And she’s doing a pretty darn good job of it!

Thank you, Jesus, for my beautiful, giggling baby girl, Elise Caroline.

4-D Ultrasound closeup of Elise’s face

Elise enjoying life!

(For anyone contemplating terminating their pregnancy with a child that is going to have any level of special needs, do me a favor. Go back to my very first post and scroll through pictures of Miss Elise. See that her life is full, and so is ours. Was this what we always dreamed of in a daughter? No. That’s just it, though. Life is not a dream. Tragedies will happen; hearts will break. But out of adversity, you will gain much love. And there’s no love stronger than that of a mother and her child.)

I had to sneak a belly pick in! Excitedly awaiting Elise's birth...

If you want to learn more about Elise's life and her personal struggles, check out "Elise in a Nutshell" here.

Wednesday, January 18, 2012

To Eat or Not To Eat...

Before Elise was born, and after many months of seeing her obvious brain injury crystal clear on an ultrasound, I was told what I could expect. I listened to all of the concerned and educated words that came from the mouths of doctors and specialists. I didn’t necessarily hear them, though. My mind was in a smothering fog, swirling about with the notion that I would soon give birth to a baby who would grow, but stay a baby. We had prayed our guts out. Some for complete healing, and others for acceptance and help from the Lord for what awaited us. With all of the more challenging and devastating news that we received, (possible deafness, blindness, mental retardation, cerebral palsy, death), there was one tidbit that was pretty well glossed over. Just a quick note from the doctor during one of our many question and answer sessions in his office: “Don’t expect her to even have a suck reflex. No nursing, no pacifier, no bottles, no thumb sucking, no drinking, no, no, no….there’s no way.”

So... fast forward a few months and ask me how it felt for Miss Elise to immediately begin nursing right there in the delivery room!

To spare those reading this, I will not show any big breastfeeding pics that I have. This one was taken in the delivery room soon after she was born. Yes, I am being watched by my mom, my dad, my husband, and 2-year-old. Check out the look on my face when I notice that my dad is VIDEOTAPING! I’m sure all was covered, but still…

Although it was incredibly hard to nurse her, nurse her I did! My memories of breast feeding Elise aren’t tucked away in that normal spot that women have in their “mommy brain”. Although I did love nursing her as much as my other babies because of the closeness and all of that special junk us nursing moms talk about, what I remember most is lots of struggling and uneasiness. For example, the awkward feeling of sitting on an airplane on our way to a new therapy, trying my best to nurse her (while acting like I wasn’t nursing her) in one of those seats that literally puts you face to face with passengers seated across from you. I also remember trying to time her feeding sessions in between all of her appointments and therapy visits, which wasn't an easy task! She needed more help than the average baby because of her issues, but we were all definitely impressed with her effort. Not surprisingly, after a few months, it was revealed through a suck/swallow study that Elise was aspirating the breast milk, and would need to have all liquids thickened from that point on to avoid some pretty serious complications.

So, goodbye to my nursing bras, and pretty pink Boppy pillow…. and hello to bottles, formula, and Simply Thick (thickener for liquids). Amazingly, she immediately took to the bottle, which brought another deep, relieving sigh from me, as I desperately wanted her to drink like a “normal baby”. We had to thicken to honey consistency, (you fellow aspiration mamas know what I’m talking about!), and it took her a bit longer than average to drink the bottle, but she did it!

Lane helping out with his baby sister by giving her a bottle.

GiGi giving Elise her bottle. We would put her hands on it in an attempt to help her one day hold it herself. She never did achieve that skill.

Elise loved her bottle for many years past babyhood. Jackie (in-home caregiver) eventually had to sit Elise on the stool in front of the chair to feed her the bottle. Whatever it takes!

Elise was so good with her bottle, that even her 88-year-old great-grandma could feed her.

OK, ok...I know this is against “bottle feeding etiquette”. In my defense, it looks like she was in a Big Lots cart, which meant I had no time to stop and hold the bottle myself. There was major deal shopping to do!

Life was good. Elise was drinking a bottle, and had even started eating thickened homemade baby food. I videotaped her first “solid meal” like a proud mom with such gratification that SOMETHING actually felt typical when it came to her development. I was kept on edge, however, by the knowledge that most kids around the age of 3 or 4 naturally stop sucking the bottle nipple. The feeding therapist assured us that the bottle could not last forever, and we all knew that Elise was not advanced enough to use a sippy cup or straw for all the liquids she needed. Unfortunately, after several years of drinking her bottle, Elise did eventually start to drink less and less, to the point of us having to occasionally feed her with a syringe in her mouth. Very

counterproductive! That is the point at which we were introduced to the idea of a G-tube to feed her through a button surgically placed in her stomach and accessible from the outside. A G-tube, to me, meant failure. All of the wearied phone calls to therapists and doctors. The long eating sessions and persistent feeding therapies -- down the drain. It took me some time, but I finally comprehended that getting a g-tube for Elise wasn’t necessarily about wasted time and lost expectations. It was simply a case of pride. Whenever anyone asked about Elise or got the rundown on all that was wrong with her, I could always pull one little gem out of my bag. Elise can drink! It seems so ridiculous to me now, but my feelings at that time were very real and extremely strong. I held onto this skill like it was my own personal self-achievement. It was even something that most all kids like her definitely cannot do. It was as if we were folding our hand in this emotional game of pride -- total and complete defeat. I was shocked by the self-realization that I was completely wrapped up in her drinking liquids more for me than for her. I don’t remember if I prayed about it or if someone gave me a swift kick in the butt (probably the latter), but I eventually put on my “responsible mama” hat, came to my senses, and scheduled the surgery.

I’m so glad to have thought to get one last shot of her perfect little tummy. I don’t even remember her looking this way!

Right out of surgery. Pretty gross, but we got used to it. The long tube eventually came out and only a button remains. We attach a long tube to it when it is time to give her any liquids.

Everyone became very proficient at using the G-tube. Even Gigi, Popi, and PawPaw!

I left the room while Lane was helping me tape up the gauze around her button. This is what I came back to. He put way too much tape on her, and if you look closely, you’ll see that she even has tape on her forehead! Lane was always a good helper.

Elise receiving Pediasure before bed last year. (Ignore the paint color samples on the wall behind her!)

What I am most impressed with when it comes to Elise and what we were told she would never be able to do, is the fact that she has retained her talent of eating pureed food for all of these years. She is a pro at eating what I call her “mush”, and opens her mouth like a baby bird for each bite. She eats anything we eat, just pureed. Yes, what she eats each day looks quite gross and disgusting. Picture a meal of roast, potatoes, carrots, broccoli, and french bread all put into a blender and served up in a bowl! I remember when Elise was a baby and we were in Canada for a specific physical therapy treatment. The mother of a child several years older than Elise was feeding her daughter the same mushy looking gruel that I spoon into Elise’s eager mouth now. At the time, I was completely grossed out and couldn’t watch for long. It’s funny how time and experiences will change your attitude about something that you couldn’t imagine doing yourself. I now LOVE feeding Elise, much in the same way this mother fed her daughter so many years ago.

Elise’s first solid meal of baby rice. She ate it all!

Food on face... Full Tummy... Happy girl!

We’ve come a long way, baby!

No, we’ll never sit down and enjoy a steak dinner together. I will, though, have the satisfaction of spoon feeding her orange and grey mush for the rest of her life, holding onto the knowledge that I am giving her something that brings her joy and wakes up one of her few working senses. Pride is no longer an issue when it comes to Elise and how she does or doesn’t eat and drink. I have found other things to hang my hat on -- like the fact that she looks gorgeous in a new dress, or that she has an infectious laugh that so many like her never seem to develop.

So, what I guess I take away from all of this is:

"To eat or not to eat?" is not the question after all. The main question I needed to ask myself was, “Had I been deceived by my own pride?” My answer was a resounding “YES!” It was a good lesson to learn in my world of special needs with Elise, where pride doesn’t come around too often. I’m now more careful to make sure that my decisions concerning Elise, actually concern Elise and not just my skewed sense of achievement.

(And, by the way, we absolutely couldn’t live without the G-tube. There is now no struggle or anxiety around getting liquids and medication into Elise. It is easy, convenient, and a MUST HAVE!)

We have always given Elise tastes of the icing on her cake. As she grew older, she began actually eating parts of the cake or cupcakes with lots of supervision!

Elise began something called VitalStim therapy with an Occupational Therapist when she was only a few years old. This therapy uses several little electrodes that are placed around her face and throat area to help accelerate strengthening and help the brain remap the swallow function. I believe it did wonders for Elise’s swallow and ability to eat.

We always worked with Elise to drink out of a sippy cup. She worked hard at it, and got to where she could take several sips at a time, but could never quite get the hang of it for it to be very useful.

Elise eating “therapy” food. With help, she can eat graham crackers with peanut butter, little turkey hotdogs, cheese puffs, bananas, pumpkin pie, and other regular types of food. We only give her these foods as part of therapy or when we want her to work a little harder!