Feel Free to Stare... I Would.

Be completely humble and gentle; be patient, bearing with one another in love. - Ephesians 4:2

I don’t notice it much anymore as I enter a room with Elise and we are greeted with stares, whispers, and wives nudging their husbands to turn around and see what just walked into the room. After so many years of wheeling Elise around in a big honking wheelchair while she stares off into space or, even worse, hits herself in the head over and over, I am so used to the reactions that they don’t even phase me. Truth be told, they never did. I’m pretty hard to offend when it comes to the reactions of people when first confronted with Elise.

I know that there are many parents of special needs kids who are sensitive to the rubbernecking, gawking, and questions or comments that their kids receive out in public. I just don’t happen to be one of them. I try to remember the times that I have peered around a corner to get a look at someone who may be physically different than the average Joe. Anyone would be lying if they didn’t admit to times that their own mouth hung open when they witnessed a child with a major disability or sickness waiting in line with their parents at the grocery store. To avoid getting my panties in a wad over each gaze that lasts a little too long, I think about the person’s intentions. Are they trying to make fun of Elise? No. Do they want to make me uncomfortable? No. Are they deliberately trying to be rude and disrespectful? Of course not. So, what that leaves us with is plain old curiosity. Most people are simply curious to see a little child who cannot walk, doesn’t talk, and has a love for pacifiers at the age of 7. Instead of rolling my eyes and mumbling under my breath, I decided years ago to turn this situation on it’s head.

I think of it this way:

How awesome is it that God has given me an opportunity that not many have to interact with strangers and, hopefully, show Jesus’ love? God has given me something that typical families will never have. I can share our story, our faith in Him, our struggles, and our victory over such a tragic situation by just going out with Elise. I embrace this as something unique that sets us apart from every other “normal” family at Chick-fil-A. If I don’t have Elise with me while I’m out and about, I just blend in. Nobody cares about my story. Not one person would strike up a conversation with me. Elise is the catalyst. Sometimes it is just someone saying hello to her. Other times, people may specifically ask what happened to her. I welcome these comments and questions. More of us special needs moms should see these situations as an opportunity to show Christ rather than showing anger, disgust, or impatience.

So, instead of feeling like it’s the world against me, I just smile. You would be surprised at what a smile can do. It lightens the mood. It softens everyone’s heart. It opens up conversation. So many times, I have been at my son’s baseball practice, or in the middle of Target when I will get one of these inquisitive gazes. I am a pretty good judge at this point at knowing whether the person is just looking or wants to talk. A quick smile from me gives the onlooker a chance to realize that I am welcoming questions, comments, or just a compliment on her dress (I love those). There have been several instances in the past 7 years that a stranger has walked up to Elise and I and asked if they could pray over her. How cool is that? I can only thank God for these people who so swiftly come in and out of my life, never to be seen again.

The most beautiful thing I have experienced when it comes to public situations with Elise, is when someone brings their own child over to “meet” her. It is almost always a little girl - or several together. Boys aren’t interested. They walk by, keeping their gaze on her, and decide that there are more interesting things to move on to. Little girls, though, are always bewildered by her condition. Why is she sitting in that chair? Can she play? Why is she sucking on a pacifier? A little girl at church came straight up to Elise one day and boldly asked, “What happened to her? Is she OK?” I simply explained Elise in the best way I knew how to a child, and it satisfied her curiosity. She now smiles and waves to us in the sanctuary. Another little boy once asked his mother why Elise was sitting in a wheelchair. I would give a million dollars to see the look on his mother’s face again as she fuddled her way through a not very well thought out explanation. She told him, “Isn’t it neat? She doesn’t have to walk around all day like you. She gets to be pushed around in a chair!” I just knew as she walked off that she was kicking herself in the butt for that comment. The best thing to do in those situations, though, is to laugh. She didn’t mean anything by that answer. She just found herself caught up in the web of -- “What can I say that won’t be offensive?” As parents of special needs kids, sometimes in our eagerness to just feel normal, we expect the rest of society to not act human anymore. Don’t look, don’t comment, don’t question.

I realized from the beginning that WE are the ones who stand out. We are not a typical family. What they are seeing is not the norm. It won’t ever be. I just had to say, “Face it, Ashley, you are now the elephant in the room.” To me, it is much more uncomfortable when I walk into a room with Elise and everyone immediately looks the other way. It can be comical to see the different ways people can divert their eyes from Elise, trying not to offend. Then there are the times that seeing Elise has been very upsetting to certain younger children. One little girl couldn’t peel her eyes away from Elise as we ate lunch after church one Sunday at Souper Salad. She actually cried through the meal, stealing looks over at our table. Oh, how I wished her mother would have brought her over to meet Elise and see that she was ok. I hated that it was such a terrifying experience that will stick in that girl’s mind forever just because her mother was too uncomfortable to come introduce her to us.

So, don’t worry about it. Feel free to stare. Maybe next time, though, come ask me about her. I would love to talk!

Instead of being bitter, be pleasant

Instead of being offended, laugh.

Instead of showing anger, show restraint

Instead of showing irritation, show God’s love

(This post was not written regarding people who are rude and crass to our kids in public. I do not brush that off. I also know that some moms of special needs kids may not share my views. This is just a representation of how I feel in my specific situation. We are all different with how we feel and deal with our kiddos!)

Visually Stimulating a Blind Child

Some people may wonder why I am talking about vision stimulation with regards to a child who is blind. Well, Elise is cortically blind. Her eyes are perfectly formed with no physical impairment. It is the back part of her brain, the occipital lobes, that is completely damaged. As a matter of fact, I was told that she was blind in the first days after her birth, before it would be noticeable by just observing a newborn. All the doctors had to do was look at her MRI. Her eyes do their job. Her brain does not. What that means is that stimulating Elise’s vision, or lack thereof, could possibly lead to visual improvement. After years of keeping Elise in a visually stimulating environment, we are still unsure of what, if anything, she can see. We know for certain that she sees light. She will turn her head toward a light that is turned on in a dark room. It is with this knowledge that we have saturated her days and nights with as much moving and twinkling light as possible. Our motto is, “Who knows if she actually sees what we put in front of her, but let’s assume she does.” On the other hand, she definitely does not see objects, people’s faces, or movement of any other kind. It is funny sometimes when a person has a hard time wrapping their brain around the fact that Elise is deaf/blind. I can’t count the number of times someone has said to me, “Are you sure she doesn’t see anything? I’m positive she just looked straight at me.” I don't have the heart to tell them that they just happened to step into the space she was staring into before they came along!

(This post is mainly for those special needs families who are always looking at what others are doing for their blind kids. I love sharing ideas and getting creative by seeing what other families are doing. I will post pics of several things we have done over the years, but there isn’t enough time for me to cover everything! In addition to what I have posted, we also worked on pleoptics and hyperbaric chamber dives. When we quit, we had over 200 dives under our belts! The HBOT dives did seem to improve her vision somewhat, but it always regressed back to nothing. We don't do the vision boards and pictures anymore. We realized that Elise was not responding to them and not seeing them. But, all cortically blind kids are different. One may respond well, one may not. Elise's brain injury is just so profound that many things we tried in the beginning, we did not continue with due to the realization that her brain was just not able to respond. At this point, much of what we do at home revolves around just keeping her visually stimulated and happy.)

Chris showing Elise her black and white pictures. These sorts of pictures can be used to improve vision in cortically blind babies. My mom found them on the internet, and we printed them and laminated them. (I have them on my computer and can email them to you if you would like. Just email me.) We put them in front of her constantly because we did not yet know how badly impaired she was or what her abilities to improve were. In the beginning, she would actually catch one in her vision field and follow it across. After seizures started, though, it was completely lost and never regained. We do not still show these to her, but I believe it is very helpful to other kiddos with CVI who may have more visual potential than Elise.

Lane showing his baby sister the pics. The ear protection is because of a sound therapy we did with her in those early days. It could get loud and annoying! Once again, at this time we were unaware of the extent of Elise’s hearing impairment. After trying hearing aids and having various tests done, it was discovered that her cochlea was completely damaged. This meant that no matter how we amplified noises, she did not have the physical ability to ever hear them.

We always surrounded Elise with black, white, and red. Very visually stimulating. Even if you’re not sure if they see anything, what does it hurt to make sure that her surroundings are the best in color and patterns for vision?

Elise’s black and white checkered wall. Very visually stimulating. We would put her in her therapy seat and sit her in front of this wall with bright lights shining on it. I always felt frustrated that she didn’t seem to respond to all of the radical steps we took to provide her with vision help. I figured, gee, here we are willing to do anything, even paint our wall like a checker board, and she just wasn’t the best candidate for it.

Elise sitting in the Bumbo in front of “vision boards” that we made. We always propped these boards in front of her wherever she was. Even in bed. We tried keeping the boards simple, but we noticed that Elise responded best to things that were "busy". Like I said before, the way she looked at these boards was completely lost due to seizure activity that is yet to be completely controlled. We bought the boards at Hobby Lobby and put her black and whites on them. I also put borders from a teacher supply store around the edges in the middle. This is just one of many boards that we made. By the way, the head control that she has in this picture was lost after seizures started, and we are still working to get it back!

This is a video that is specifically known to work on children with CVI. It is called “Baby’s Smart Start”. We found it online somewhere years ago. There are several of them. When she was younger, she would sit and stare at the television. As she grew and her seizures worsened, she quit paying as much attention. We are wanting to start working with these videos again. Sometimes it just helps to take a break from certain activities and come back to them later.

We really stood out at the hospital during this stay! I couldn’t stand the thought of Elise laying in her bed for days on end with no real stimulation. So, this is what we did. I’m sure the nurses thought we had lost our minds. Especially since her chart said she is blind!

Same thing for airplane rides. I felt guilty if she didn’t have something visual in front of her. Black, white, red. Poor kid couldn’t catch a break!

This is a Vision Box that Chris made for Elise. Thank God for PVC pipe! I will post all of our PVC creations soon! We would just slide her in and leave her. She either saw it or she didn’t see it. I always felt better to just keep her surrounded with things to look at rather than having her stare off into space.

Her 1st light wall made to be used while in her standing frame. Since we know she sees light, I was always thrilled to put her in front of this to give her something different to do.

This is a “Light Box” that Chris made at our new house. In the beginning, it did not have a black cover over it. Elise has had the master bedroom in both of our houses. She has tons of equipment and several floor mats. She deserves the biggest room.

We decided to cover the “Light Box” with black material. This makes the lights seem even brighter and allows her to use it during the day.

At school, she works on a computer with a program that uses different lights. She totally understands “cause and effect”. It is kind of her thing! So, she pushes a switch (button), and it changes the color or effect that is on the screen. Her teacher made a make-shift cover to go over her and the computer to make it as dark as possible. If the lights are on in the room, it makes it hard for Elise to see the other lights that we want her to focus on. That is why she is under the black shroud. I will never get used to looking in her school folder and seeing that she “worked on the computer”!

Elise’s best vision accomplishment, in my opinion, is her ability to locate and follow (75% of the time) one of those light globes that rotates really fast and produces a cool light show. It also vibrates when turned on, so she likes to reach out and try to find it and touch it. This is VERY HARD WORK for her.

Elise really responds well to her light box at school. It is very bright and commands her attention. She definitely looks at it! If only I could put my face on it--then she could look right at me!

Soccer and Yogurt- The Perfect Combination!

Tonight was our first soccer practice of the year. The reason I say “our” first practice instead of “Lane’s” first practice is because it is a family affair. Ever since Lane was 3-years-old, I have packed up his sister, (and years later, his brother), and trekked out onto the fields to yell, “Get the ball, Lane!” while sitting on the sidelines. I would have expected the same out of him if his sister could have participated in a sport. The more support the better! After practice, we headed to Yumilicious to fill up on yogurt. Elise loved being outside in the cooler weather, and even laughed a little in the wind...

Lane and Elise at the soccer fields

Shade Hog!

Yummm! Gigi was missing b/c she is recovering from hand surgery.

(I ate enough for her, too!)

Early Birthday Celebration!

On Sunday after church, we all gathered at my Grandma Wilson’s nursing home here in Allen to celebrate a couple of birthdays. My grandma got a wonderful and surprising gift for her birthday in 2004, when Elise Caroline was born into this world on the same day as my grandma arrived back in 1919. September 8th always brings a joint party for them both, usually at the nursing home. No bounce houses are needed for either of these birthday girls! Just family, cake, and gifts. We had a great time, and can’t wait for next year. Happy Early Birthday Elise and Grandma!

Elise will be 7 and Grandma Wilson will be 92!

A poem I wrote a couple of years ago...

I See You

A poem from Mama to Elise

You can’t see me, but I see you,

Baby girl with eyes of blue.

Skin so pure- untouched by life,

Concealing years of hidden strife.

I stare at you in bed at night,

Knowing that nothing can make this right.

It seems so wrong for my little girl,

To never know God’s marvelous world.

The things you’ll miss as years pass by,

So much in life you’ve been denied.

You can’t hear me, but I hear you,

In a special way, my words come through.

You place your hand up to my mouth,

Vibrations from my voice come out,

They let you know that Mama’s there,

From mouth to hand, we’ve learned to share.

Sharing sounds and sharing songs,

Joining this way keeps our connection strong.

At times I cry for who you are,

But more for who you’re not.

There’s more to who you are besides this virus that you caught.

You laugh when Daddy combs your hair,

And cry when you need rest.

The way you kick and splash and squeal,

For you, bath time’s the best!

You can’t hug me, but I’ll hug you,

I pray you feel my love come through.

I wish that everyone could know

The things that you don’t always show.

How every laugh and cry are true,

Which only few know meanings to.

Selected souls that know you through,

To them, your voice speaks something true.

Despite what’s missing from your life,

I want the world to know,

When you were formed within my womb,

That God gave you a soul.

Life here is good, but I can’t wait,

‘Til we meet again at heaven’s gate.

You’ll run to me with arms outstretched,

The sight of you will steal my breath.

You’ll see me, hear me, say my name,

Forever healed and free of pain.

God gave me you because he knew,

That through it all, I’d see you.

If Only Batteries Could Fix Her!

My youngest son, Ty, watched as I lifted his big sister onto her bed after a round of physical therapy a few days ago. He doesn’t realize yet that Elise is profoundly affected by a brain injury. As far as he is concerned, every family has a little girl who rides in a big chair, cries like a baby, and is fed liquids through a tube in her tummy. I remember when my older son, Lane, started to become aware that there was something not quite right with his baby sister. It was a gradual process of realization that never needed a formal conversation about her differences. It just kind of happened. As he got older and understood more, it all just came together like a big puzzle. Each piece was put together from different experiences in public, question and answer sessions with Mama and Daddy, and tagging along to her many doctor visits. So, as I watched Ty watch me, I thought I would explain a little about her to him. For a two-year-old, her problems are a hard concept to grasp. I told him that her ears are broken so she can't hear him, and that her eyes are broken so she can't see him. He thought about it for a moment, pointed to her and asked, "She needs batteries?" He related it to a toy that quits working. It usually just needs new batteries. For now, that is how his little mind makes sense of his sister whom he can’t play with or talk to. So, I guess I won't be surprised if I come in one day to find Elise with a AA battery beside her in bed.

Elise in a nutshell...

OK, that title is misleading, but there is not a way to pack an explanation of Elise and her life into a nutshell. "Elise in a million words or less" didn't sound as catchy. So, here it goes…

No hugs, no kisses, no "I love you, Mommy". Although this is what I receive from my 6-year-old daughter, she has brought to me the gift of pure love. I never knew there was such a thing as pure love. No strings attached. No receiving anything back. Literally. Only the constant giving of myself, my affection and my tending to her needs. This is the life of a mother that God blessed with a baby girl who is totally and completely challenged in life.

When I was 4-months-pregnant, my doctor discovered by ultrasound that Elise was infected with Cytomegalovirus (CMV). Almost everyone gets this virus by the time they are an adult, but it is only really dangerous if a mom gets it in her first trimester. Although I suffered no symptoms of CMV, Elise was profoundly affected. This insidious virus attacked her brain. From the 4th month of my pregnancy, our family watched as each ultrasound showed the continuing damage that this virus was inflicting on Elise’s brain. We literally watched it happen, and there was nothing we could do. Talk about feeling helpless! There were 13 doctors and nurses in the room when Elise was born. They anticipated she would not live or that she would have major problems. Instead, Elise was born with no other organ involvement other than her brain. She could breathe on her own and was not sick. She was able to go to the well-baby nursery. This all seemed too good to be true. It was. Within 24 hours of her birth, we began to slowly realize the impact that this virus had on our beautiful little girl. She has calcifications of the brain, fluid buildup throughout, and the bridge in her cerebellum is missing. She is profoundly deaf and blind. She suffers from microcephaly, epilepsy (many types of seizures), and Cerebral Palsy. Due to her injury, she has feeding issues and requires a g-tube for all fluids and medications. The doctors have told us in the gentlest way they know how that, on average, children like Elise have a lifespan of around 7-10 years. That is the bad news.

This is the GOOD news! God has given us the ultimate experience in life to find out what we are made of! Which, by the way, is way more than we thought! We have turned our eyes and hearts away from what we thought helped bring happiness to our lives-- striving for comfort, perfect balance, and unattainable control. None of these is possible for our family now. But, who cares??!! Who needs those ridiculous goals when you have God on your side in complete control?

We love her so much, and we will do anything to help her live the best life she can. There are so many things that can be done to help Miss Elise reach her potential in life. Since we knew for many months that Elise would have problems, we immersed ourselves in research to see what DOES work for children with brain injuries. We found a myriad of opportunities. Our job was to wade through all of it and see what REALLY worked. Medical doctors have very little to offer brain-injured people. But we parents know that we cannot stop searching for help. We also know that, because therapies are SO VERY EXPENSIVE, we can't chase pipe dreams. For years, we criss-crossed North America in search of how to “fix” Elise. We slowly came to the realization that there was not miracle drug or therapy out there that could make her walk, talk, see or hear. For us, personally, we have found it most beneficial to focus on keeping Elise mentally stimulated as much as possible. Our house is full of toys that light up and vibrate (Elise can see light and loves vibration). My husband has become an expert at creating extravagant toy bars, light rooms, and all kinds of therapy equipment using PVC pipe. I will post some of our creations soon.

The bottom line is, Elise was given to us by God and it is our responsibility and duty as her parents to provide her with the best life she can possibly have here on earth. He has also used our baby girl to touch so many people in our community, church, and family. Most people don’t even realize that children and babies like Elise even exist. If they did, surely they would be more able to recognize their blessings when it comes to their own lives. We realize these things more than ever now. If we ever prayed for patience and strength, this is NOT what we had in mind. But that’s just it, life doesn’t always turn out like what we have in mind. By no means has Elise’s life torn my family apart. It has saturated our lives with the need for God and all of His mercy. This is wonderful! God blessed us with an incredible challenge. A blessing disguised as a obstacle in our race of life. With God leading us, we are ready for the challenge.