Three, two, one – Smile! September 24, 2012

Dear Maddie and Jackson,

Your childhood memories line the walls of our home to the point where your grandmothers laugh at me. And I could easily be accused of an obsession with digital picture frames.

Maddie shares my obsession with the digital frames, watching the pictures scroll by for several minutes at a time. While

First day of school.

the photos don’t stand a chance against SpongeBob, she is so happy reliving past vacations, holidays and everyday photos we snapped around the house. “That’s me!” “Oh look, it’s Daddy!” As if she hasn’t seen them a thousand times before. Or that I would display photos of random strangers.

Easter Sunday

I have a deep appreciation for the value of photos. While that sounds crazy, they enable us to relive our fondest memories – our first family vacation with the hot tub so cool you were allowed to swim in it, Christmas mornings with your deepest wish fulfilled, birthday parties with a fire truck in our driveway or a magician in the living room, pumpkin carvings and lazy days at the beach. They remind me of the sweet smell of you as babies, your past obsessions with BeyBlades or the super, super green socks.

As someone who can too easily remember the negative in great detail but must work at remembering the positive moments, photos jog my memory. Photos help me mentally put the bumps in the road in their proper place. Help me dwell on the best of times in our family’s journey. Because there is nothing gained by reliving the negative. By reliving the highs, I get to enjoy the sweetness, the silliness and love again and again. And who wouldn’t want to do that endlessly?

Photos helped me survive during the darkest times of our journey. We still took lots of photos even in the chaos. And no matter what else had happened that day, when the camera came out everyone did the same thing, every time – we smiled. We looked happy.

Those were the days when you still took pictures on film and had them developed. So at some point in the future, I would

South Carolina Baseball Alumni Game

pick up a stack of photos. And there we were – smiling. Everyone looked so happy. And I would wonder why I was worried that you felt the stress and exhaustion your dad and I were. Wonder why I was worried you were having a terrible childhood. Just look at all the pictures of  you smiling! As ridiculous as it sounds, photos kept me going.

Today, the photos serve a far less desperate but richer purpose. They let me be relive the best parts of our family’s journey. I am so grateful for the blessings in our lives. For the memories we create. For the privilege of being your mom. Photos let me remember the depth of our family’s love. The strength of the bonds between us. And the beautiful life we are creating together.

Keep smiling and I’ll keep snapping photos that someday you can show to your kids.

Love,
Mom

Celebrating the new normal August 9, 2012

Dear Jackson and Maddie,

When the storms of life roll through, as they inevitably will, it is okay to be angry and to grieve the loss of a dream. This may not be the reality you anticipated or desired and you need to grieve authentically.

But eventually, you need to begin the process of healing. At some point you must release the old dreams, embrace the new normal and begin to dream new dreams.

If you don’t take this difficult, but important step, the anger and the grief will eat you from the inside out. The storm itself won’t ruin your life but the anger and bitterness just might.

Fortunately, there are alternatives.

In time you can choose to release your original plan and trust that Romans 8:28 will remain true in your life, just as it has during the centuries before. You can choose to trust in the grace and the care of the great I AM. And you can ask for your heart to be filled with the desires of His heart.

Savoring my moments with Maddie.

You can embrace the beauty of the new normal, and celebrate in it. I choose to celebrate each new word that Maddie learns to read. I enjoy that her developmental pace allows me to indulge my love of great children’s literature for many more years than a typical child would ever tolerate. And even as I long for Maddie’s independence, I choose to savor the connection I feel with her because she needs me so deeply.

Embracing what is allows you to experience the most amazing sibling relationship. You live unconditional love for each other more than I knew was possible on this side of heaven. While our family dynamic certainly has its challenges, your relationship is a beautiful by-product and one of the best things about our family!

Accepting the new normal doesn’t meant that there won’t be moments of anger and grief. There will be. And they will hit at the oddest times. But experiencing a moment of grief does not mean wallowing in it day after day. Experiencing moments of anger does not require that you dwell on it through the night. In those moments, you can choose to allow the anger to destroy you or you can choose to embrace what is and celebrate the good that exists in every situation.

Every life experiences storms. Whether it is a difficult season that God uses to shape you or a catastrophe that ruins you depends wholly on your attitude and choices. I implore you to allow God to help you dream new dreams. You will never be disappointed when you live the life you were destined for.

Love,
Mom

PS — As a side note, the book Tear Soup is a helpful resource as you grieve.

The Wisdom of Dory July 16, 2012

Dear Jackson and Maddie,

When Jax was a toddler you were enamored with the movie “Nemo”. Well, really your dad was. So we watched it — a lot.

Dad said he loved the relationship between the father and son and how the dad was completely committed to caring for the son. Secretly, I think his favorite part was the moral of “listen to your father” which he would repeat to you frequently. “Remember what happened when Nemo didn’t listen to his dad,” was dad’s favorite phrase for a long time!

Nemo and his dad were pretty great but it was Dory who really spoke to me. I felt a real connection to her during those days. I was pretty sure that my grip on reality and sanity were about as firm as hers.

But one day as you were watching the movie for the umpteenth time, the wisdom of Dory hit me. “Keep swimming, just keep swimming.” Dory was right. She might be the smartest one in the movie afterall.

In the middle of the crisis, you just keep swimming, doing what has to be done at this moment. While that sounds simple enough, it can be hard to do.

It is so hard to keep swimming, to be faithful, when you are tired of swimming. When you know that today will be just as difficult as yesterday and have no reason to be believe that tomorrow will be any better. Logically you know that you will not be living like this in 20 years. But that never seemed to help me much when I knew that life would be exactly the same for the coming weeks and months.

This stage was the hardest part of me. When there wasn’t the adrenaline rush of an emergency but the day-to-day grind of enduring. Of waiting for the storm to pass.

To keep the faith that God was still on the throne. To believe He still had a plan for Maddie and our family. Those were the  days when I had to cling to:

Philippians 4:13 “I can do all things through Christ who gives me strength.”

Jeremiah 29:11 “For I know the plans I have for you,”  declares the Lord. “plans to prosper you and not to harm you, plans to give you a hope and a future.”

Focusing on these verses, while continuing to swim, got us through.

As long as you do what must be done at this moment, and then what must be done in the next…well, eventually you find the crisis has ended.

And you survived. Maybe not pretty, but pretty is overrated. Survived is good enough.

Remember to just keep swimming.

Love,
Mom

Lower your standards July 2, 2012

Dear Jackson and Maddie,

The yard is scattered with bikes, sidewalk chalk and toys while the gardens desperately need to be weeded, grass mowed and tomatoes picked. Then a storm quickly rolls in.

What do we do? We gather the bikes and the chalk. We leave the toys if the rain can’t hurt them. Even if the day’s to do list was long, those plans are abandoned in the face of the storm. We do only what must be done before the storm arrives.

Life is the same. In the midst of a storm, abandon your list, lower your standards and focus only on what MUST be done.

As you can imagine, this was an incredibly difficult lesson for me to learn. At times it was almost comical. I told myself countless times, “Lower your standards, lower your standards.”

In the fiercest part of our family’s storm, my goals were reduced to:

1. End the day with four people alive
2. End the day with four people knowing they are loved

If we managed to accomplish that, it was considered a successful day. We might have eaten fast food or pizza for the fourth time that week, there might be piles of laundry screaming for attention and the house likely wasn’t very clean. But we were all alive and loved. That was all that mattered.

Remember that every trial is a storm that will NOT last forever. This season WILL come to an end.

But until it does prioritize ruthlessly and just live with what doesn’t get done. I know — you never thought you would hear your mother say that! But it doesn’t make it any less true.

In the storm, lower your standards to focus on the truly important.

Love,
Mom

I am here… May 26, 2012

Dear Jackson and Maddie,

As you grew inside of me, and even before, I dreamed of this sweet, snuggling baby – and then you arrived as a screaming creature who didn’t sleep and spit up on me! I think one of the hardest parts of being a mom is adjusting your ridiculous expectations to reality.

Jackson broke Dad and I into parenthood well! While our friends had these docile, compliant babies who slept through the night, Jax put us through the paces of every spirited child! You didn’t sleep or adapt to a schedule (I finally burned my copy of Babywise) and required nearly 24/7 attention. While this didn’t match our vision of family bliss, everyone promised that we were due for an ‘easy baby’ the second time round.

Of course, Maddie you are every bit as spirited as your brother! And then the doctors discovered the medical issues and our vision of how our lives ‘should’ be was shattered. While you have always been wanted and loved, I don’t know anyone who dreams of having a special needs child. There was a part of me that screamed, “This isn’t the parenting assignment I signed up for!” I had a vision of what our family was going to look like and a child who threw up several times a day wasn’t it.

Life often doesn’t match the ideal in our mind. Life isn’t fair and you never know what you are going to find around the next bend in the road. Sometimes what is around the bend is wonderful and exciting. But sometimes it’s just plain hard.

When life doesn’t run the way it did in your mind, it’s okay to grieve. In fact, you need to grieve the death of a dream. It’s okay to be angry and shake your fist at God. It’s just not okay to stay there.

As the months wore on after Maddie was born, I tried to gut it out and believed that if I worked hard enough, we would return to the ideal in my mind. Somehow, I was going to make all of this madness go away. Of course that didn’t happen.

And I grieved. Grief sometimes showed up at odd times. I bumped into neighbors in the grocery store one day. Their family includes a boy and a girl that are nearly the same ages as you two. And I started to cry. I wanted to scream right in the middle of the cereal aisle. I wanted to be that family. That was the family I dreamed of.

Another day I was looking through Maddie’s baby book. When I saw the first picture taken of the four of us, I burst into tears. I remember that day so clearly. Our family was complete and looked exactly the way I had always dreamed it would. I wanted to be that family again. I missed being that family. Your dad held me as I cried and astutely reminded me that we are that family still.

Like most people grieving, I was angry at God. I remember one night so vividly. Maddie and I were up for a middle of the night feeding. I was tired, crabby and didn’t want to be pouring formula into a tube to feed you only to have it thrown up all over both of us and the sofa. My heart raged against God. How could he let this happen?!? Inwardly I screamed at God, “Where were you when her brain was dying? Were you on a coffee break? Trying to solve world peace? Where exactly were you?” Immediately I was enveloped in peace and an overwhelming sense of, “I am here.”

I find it odd that I didn’t sense, “I was there,” but instead sensed, “I am here.” I’ve come to peace with the knowledge that I will never know on this side of heaven what exactly happened to Maddie’s brain and or how to reconcile the concept of a good, all powerful God in the face of a tragedy. But I take great comfort in understanding that God is walking this entire journey with us.

God walked with us as we took you to doctor after doctor. God sat with us in waiting areas while you were in surgery. God held me as I cried over your crib wondering if you would survive. God gave us strength when we just didn’t have anything left in us. Our pastor often says, “When you come to the end of all that you have and all that you are, and the only thing left is God – you will find that He is all you really need.” As time wore on, and exhaustion set in, I didn’t just believe that to be true. I experienced it to be true. God was enough. When my dreams were shattered, Maddie was so sick, I was completely exhausted and couldn’t imagine going another day – God walked with us and He was enough.

While I wish for both of you a life that is filled with success and happiness, I know that you too will experience difficulties. The tough times are part of life just as much as the sunshine and roses. Sometimes your pain will be self-inflicted – we all make mistakes. But sometimes you did nothing wrong and something terrible still happens. In those moments, when you come to the end of yourself, always remember that you are not walking alone. God walks with you and He is all you really need.

Love,

Mom

Introduction to “Letters to Jackson and Maddie” May 24, 2012

Dear Jackson and Maddie,

Our life as a family has been an extraordinary journey. Our journey has been filled with love and laughter – your scrapbooks are truly the “Story of You” and chronicle the joy of our family life. At the same time, our family’s journey included many unexpected turns, and more than a few bumps in the road. But nothing happened that God didn’t know about and didn’t control. We never walked this journey alone. As you grow, you won’t remember much what happened during your earliest years of life. And that is a blessing. However, there is so much that I want you to know. From these letters I hope that you can begin to grasp how deeply you were loved, how many people chose to walk the journey with us and how faithful our God was, and is, through it all.

I also hope you will remember the lessons we learned on our journey together. Because every life includes unexpected turns and bumps in the road. While the difficulties you face likely will be different, these lessons can be applied to any situation. My prayer is that through difficult times in your own journey you will demonstrate strong character and develop an even deeper faith in a God who loves you and has a wonderful destiny of blessing for your life.

Love,

Mom