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.

Contentment and the Pink Glitter Shoes

We all struggle with contentment. There is always something that you can focus on in your life that needs changing. A struggling marriage, boredom in a job, or just the size of the living room TV. I was often guilty of a certain amount of yearning for things I didn't have, ways I didn't look, and the ability to change my life circumstances at one point or another. Never did I realize that I would learn a very important and valuable lesson on contentment from a simple pair of pink glitter shoes.

Shopping for shoes has been a bonding experience for mothers and daughters for generations. A recent shopping trip with my 6-year-old daughter, Elise, for a pair of new shoes would prove particularly successful. Not long after entering the store, and making a bee line to the shoe department, I laid my eyes on the most gorgeous pink glitter tennis shoes I had ever seen. Holding them up to her feet, I could tell they would fit. I was already daydreaming about the outfits that I would pair them with for school and church. The profoundly sad truth, however, about this shopping trip was that these shoes, fit for a princess, would never be walked in.

When I was pregnant with Elise, I was infected with Cytomegalovirus (CMV), a flu-like virus. I didn’t have any idea that I was infected because I had virtually no symptoms. Almost everyone gets this virus by the time they are an adult, but its impact is most devastating if a mom contracts it early in her pregnancy. Even in her unborn state, Elise was profoundly affected as this insidious virus attacked her brain. She is now 6-years-old, but she has the mental capabilities of a young baby. From birth, Elise has suffered from deafness, blindness, cerebral palsy, epilepsy, mental retardation, and many other difficulties. Her doctors have told us in the gentlest way they know that, on average, children like Elise have a much shortened life span.

After traveling North America for the first two years of her life in search of how to help Elise, it became increasingly clear that there was no magic drug or therapy that could give me the baby girl I so longed for in the depths of my soul. Only then did I realize that my focus needed to move from trying to “fix” Elise, to asking God for contentment in exactly who she is. Maybe I needed to quit praying for God to change my circumstances and, instead, focus on how he could use them to change me.

Well, Elise wore the heck out of those pink glitter shoes. She wore them to school, to church, and with any outfit that matched. For many families with children like Elise, the main concern when dressing their child is comfort. For me, though, it doesn’t get any better than to introduce Elise to the world looking like a regular little girl. I thrive on the comments she gets.

“Oh, look at that beautiful dress!”

“Her earrings are adorable!”

And best of all, “Look at those shoes! They are perfect!”

Now, before you go thinking I am an image-obsessed mom, it helps to understand the position of a mother with a child who is so profoundly affected that there is virtually nothing typical about them. I will never take her rollerskating. I won’t help her with her homework. I will never hear her say, “Mama”. I will not teach her how to make pancakes, about boys, or how to put on makeup. There will be no prom, leaving home for college, or getting married - no one with whom to share my feminine know-how. I just figure, if I can’t put ballet slippers on her feet for dance class, I can definitely make sure that she is wearing a cute pair of shoes as I push her around in her wheelchair.

Several months after buying the shoes, Elise’s cousins came to visit. The youngest one, Abby, was 3-years-old at the time. She is always interested in Elise and how she fits into her understanding of how another child should look and act. One morning, Abby spied Elise’s pink glitter shoes sitting in her closet. Being the epitome of “girly” shoes, she giddily approached me with pleading eyes, asking to try on the shoes. Now, if I’m being fully honest, then I have to say that my first gut reaction was, “NO!” (if only in my head). I got a little pain inside my stomach that crawled up to my heart. “Those are Elise’s shoes. They have never been walked in,” I told myself. “What if she scuffs them?” “What if she stretches them out?” But, seeing how it might look a little odd for a grown woman to enter into a battle of “MINE!” with a 3-year-old, I reluctantly handed them over.

It was as I videotaped Abby in those shoes, pirouetting and twirling so gracefully, while Elise lay in her bed unable to get up, that I realized, “Hey, I’m happy for Abby. I’m enjoying watching Abby.” Just months before, I would have had woeful feelings of, “Oh, how terrible that Elise can’t dance in her shoes. If only I had a daughter to enjoy in this way.” It was then, laughing and clapping for Abby, that I understood that my prayers for contentment had been answered. I was finally able to see the beauty in a child that was born without any problems.

I could see it without coveting it. Without crying for it. Without filling up with bitterness because I couldn’t have it.

I know with all certainty that God answers prayers. It’s just really cool when you can actually put your finger on the moment that he does it. That was this moment. A time when I chose to be happy for a little girl who could dance in my daughter’s pink glitter shoes that, otherwise, would have never touched the floor.

A little late to the party!

OK, I have finally given in to the blogging world. It is a world that has called my name for several years now. I have ignored it as if it is my mom calling me in for dinner. I'm starving, but I don't want to stop what I am doing long enough to obey. I guess I am finally ready to comply! With the life I live raising two boys and a little girl that has an array of special needs, the experiences, funny stories, and inspiring moments are never ending. I have a collection of writings on these various things written on notebook paper, scrap paper, and computer documents. I am looking forward to having a place to put them all and share them with friends, family, and whoever else stumbles upon this blog among many.