Sunday, April 25, 2010

To Be Mary

Shortly after we brought Dylan home from the hospital, some friends stopped by for a visit. Rob and his buddy were catching up while the two of us gals talked about Dylan, his birth and diagnosis. As I sat there, holding my sweet boy, she looked at me and said, "You know, you're like Mary.” I gave her a puzzled look. "Mary who?" I asked. I could not think of anyone I knew named Mary that had a child with Down syndrome. She quickly responded, "Mary, the mother of Jesus.”

She could see the quizzical look on my face and began to explain her thought process. She explained that just as the Lord had chosen Mary to be the mother of Jesus, the Savior of the World, the Lord had chosen to place Dylan with us. She went on to say that while babies are born everyday, not everyone has the opportunity to have a child with Down syndrome or other special needs. It took everything in me to refrain from weeping. I knew who Mary was. I had heard her story all of my life, but in that moment I was beginning to see her in a different light. I was seeing Mary as a mother, a women who had gone through labor pains, who had nursed, who had changed her wee son's diapers.

I was a bit overwhelmed - again - and just wanted to shut my mind off. Of course, I couldn't. Why God? Why did you choose me to be Dylan's mom? I am not done with school. I am still a newlywed! A child with special needs go to mother who already has a few kids....someone experienced and seasoned!

I have pondered my friend’s statement at various levels for over nine years. Since Dylan's birth, two movies have been released that focus on the birth and death of Christ: “The Nativity Story” and “The Passion of the Christ”. These two movies focus on completely different aspects of his life. I often close my eyes and see particular scenes of each these movies. In “The Nativity Story”, I see Mary in labor, holding her first born son. In” The Passion of the Christ”, I see Mary walking through the temple...her on one side, a representation of Satan on the other, staring each other down.

I often feel like this is how I view the world. I accept Dylan for all that he is. I see the great work that the Lord is doing in his life but many in this world see him as an imperfect human, flawed by a single chromosome. They believe that his life is a waste. They believe that he has nothing of value to offer the world or himself, only a lifetime of pain and heartbreak. Many have viewed the birth, life and death of Christ this way: his purpose a lie, his life a waste.

Mary is often in my thoughts. In fact, it's when I'm not thinking about her that I struggle with my role as the mother of child with Down syndrome the most. I think to when she first learned she was pregnant, still a virgin and not yet formerly wed. She endured such ridicule. She was taunted and people looked at her with disgust. These were acts that would not end as time passed, but deepen and transfer to her son. As she watched her baby boy grow into a toddler, an adolescent and eventually a young man, she had to watch from the sideline as her son endured these things. Yes, she knew the Lord had a plan and purpose, but she was still human and I believe she ached for her son, the child she had rocked and sung to when he was just a baby. She knew the calling and purpose of her son's life, but to sit and watch him be mocked and teased must have broken her heart.

As mothers, we want nothing but the best for our children. We want them be healthy, happy individuals who are welcomed by the world we live in. We don't want them to be seen as outcasts or different. We don't want them to succumb to peer pressure. Instead, we want them to be role models. As Dylan has grown, my role as his mother has evolved, just as it does for every mother raising a child. My human intuition is to shield him and protect him, but this would be selfish. With each passing day, I must do everything within my power to create an independent life for him, in whatever capacity that may be. I also know that as he grows into this independence, he will be preyed upon by certain individuals.

It is in these moments my heart breaks and I wonder how Mary did it. How did she bear to see her son beaten and tortured? How did she bear to see him put on the cross? I'm sure she wondered, Lord, is this really the only way? I know the Lord has a purpose for Dylan's life. I know that there will be situations - there have been already - where I think, Must it be Dylan that teaches the world this lesson? Can't I do it instead? Of course that would be too easy. To be completely honest, I've already experienced those moments of, Oh, I get it....sorry for asking so many questions. Yeah, I should have just gone along with it from the beginning. I'll try harder next time, God, I promise!

I live each day by faith and faith alone. I believe it is through this action that Mary was able to be the mother of Jesus Christ. It is how I can be the mother of Dylan. I pray daily that I can find a similar strength, courage and grace that was shown by Mary in all that she was able to bear by being the mother of Jesus.

Sunday, April 18, 2010

Grieving "Dylan"

With all of the technology available today, getting an idea of what your unborn child will look like is not an unusual concept. Parents often pay extra for various types of ultrasounds to get incredibly clear pictures of their unborn child. There's no doubt this is fun! I attended a baby shower for some friends and they had a framed, 3-D picture of the baby girl they were expecting. The game was to figure out if the baby looked like mom or dad. They even had a baby picture of both mom and dad placed beside the picture of their unborn child. Many guessed that baby would look like Dad. Now that the baby has arrived, I must agree!

When Rob and I were expecting Dylan, we would laugh, talk and joke about what features we hoped Dylan would - and wouldn't - have from one another. We all have our best and worst physical features and obviously want our children to be the perfect combination of each parent!

In addition to all of those physical features, you think of what your child will be like: their temperament, talents, strengths and weaknesses. You wonder how these things will come to light over time. You wonder what sport (if any) will interest them, what their favorite subject will be and what types of activities they will enjoy most. You think to their future: what college they will choose, what career they will explore and whether or not they will marry and have children. There are so many things parents-to-be wonder and it's fairly typical for it to get discussed non-stop during that nine month incubation period!

From the moment Dylan was born and his official diagnosis was given, we began to wander down a different path. But it was not until I attended my first Down syndrome Parent Support Group that I felt the full impact of Dylan's future and what it may or may not hold.

I attended the first meeting alone, during the week while Rob was at work. I don't remember a ton of details. It was a small group and everyone was curious to hear all about Dylan. He was the youngest one in the group and we were the newest "members" to this "Down syndrome Club", so to speak.

It was an informal setting and I sat there with Dylan and listened to the chit chat around me. Another mom in the group had a young son about a year older than Dylan. I remember nothing about our conversation expect her comment: "You must realize that you need to grieve ‘Dylan’: the ‘Dylan’ you were expecting, but didn't have.”

I think I appeared confused at first, but she repeated her statement and it clicked. The Dylan that was nestled in my lap was not the "Dylan" that I had dreamed about for nearly nine months. My heart sank. She was right. I had planned another future for another "Dylan". The Dylan that sat in my lap was going to lead a completely different life. It would not be a bad life, but certainly not the one either Rob or I had day dreamed about.

Dylan will hold a job someday, but he won't be surgeon. Dylan may choose to marry, but he won't ever be a father. He will not give us grandchildren who might have had his red hair. Dylan may choose to live independently, but close tabs will be kept on him and our "nest" will never be completely "empty". Dylan may learn to drive, but many strings will be attached. I had to grieve the other "Dylan".

I once thought that grieving "Dylan" would be done in one shot. That has not been the case. Grieving "Dylan" is a life long process…at least it is for me. It tends to catch me off guard.

Not long ago, I spent the afternoon with my niece. She is a year older than Dylan. We went to a theatre show, had dinner and talked bunches! As I spent that time with her, I realized how vastly different she and Dylan are, even though they are only ONE year apart. She could readily express her favorite subject, thoughts about her teacher and fellow classmates, make hysterical jokes, and had a purse were she kept her money, iPod, lip gloss and other items. It is these moments where I grieve the "Dylan" I don't have or know. I would not trade the Dylan I do have for anything. I don't breakdown crying or get angry, but I am reminded that the life I lead, that Dylan leads, is not at all what I thought it would be.

I adore my life with Dylan, as challenging as it may be at times. But these are the moments that I have to stop and catch my breath, to ask God again to show me what it is He's doing with my life - my family’s life. I'm only nine years in, but God is revealing a beautiful picture. I will have moments that I grieve the other "Dylan", but my moments of celebration for the Dylan I was given are countless.

Sunday, April 11, 2010

9 Year Solitude

Rob and I created a road map of our life together, expecting things to happen in a particular order. We took an unexpected turn when we became parents after only being married seventeen months. Then the words "Down syndrome" were uttered and my world was completely turned upside down. It would completely impact every aspect of our lives. I did not see it as a bad thing, but rather more like something that makes you stop and catch your breath. It was becoming quite obvious that the Lord had another road that was much bumpier than the one we had planned to take!

I was in the middle of my junior year of college when Dylan was born. I always dreamed of going to college. Growing up, my mom worked as an in-home day care provider so that she could be home with her kids. The backyard was full of toys where I would hold "recess". When "recess" was over, I would play "teacher", summoning the daycare children, my "students", to an old shed where I had set up an assortment of items as tables and chairs which I topped with paper and crayons for their daily lesson. I could not wait to have a classroom of my own someday!

Since my pregnancy was a surprise and I wanted to finish my college degree, we moved into married student housing that was available on campus. My plan was to take as many classes as possible at night so we would not need a baby-sitter. There were plenty of gals around campus who needed a bit of extra money and I would arrange to have them care for Dylan when I had to take a day class while Rob worked. After Dylan was born, I put my plan into action. It was working...but I was quickly losing interest in school. All of my energy was focused on Dylan. When he was just three months of age, therapists started coming into our home. Early intervention was essential in Dylan's development. A funny thing about that is many of the classes I was taking (and had already taken) focused on child development. In fact, the first book I whipped out when we got home from the hospital was my child development book. It contained maybe a paragraph or two on Down syndrome. It was time to visit the library!

With each passing day, it was becoming more and more clear. The Lord had given me the desire to teach, but not other children. My desire was to teach my own son, Dylan, and, if the Lord provided, his future siblings.

I have worked a variety of jobs since Dylan's birth but the desire of my heart was to be a stay-at-home mom – it has been since I was just a tiny girl playing house with my dolls. I make no apology for it. It is who I I am wired. I feel incredibly blessed that over time the Lord has made this dream possible.

I do not know that I will ever finish my "formal" education. I could have pushed myself to finish when Dylan was a baby but for now, he has been my education. I know this has disappointed some of those closest to me, but I cannot ask my self "what if" or worry what others think. My gifts, my strengths, my weaknesses - they are taught to me daily through being a wife, mother, friend and Christian. I know what is dearest to my heart and what I want to do with my life. I am always growing and learning. I can only hope and pray that this desire remains until the day Lord calls me home - MANY years from now!

As Dylan has grown - as our family as grown - we have faced the traditional ups and downs of life. Many times, these ups and downs are more intense as a result of the Down syndrome. With Dylan's age and growth, we have faced unique challenges. Dylan has no sense of environmental dangers: drowning, walking into a street and being hit by a car or even getting lost (just too name a few). As an at-home-mom with multiple children, this can be a difficult. Unless I have the assistance of another adult or individual, it is nearly impossible to do what most would think of as simple task or outing: going to the park, the grocery store or for a walk.

During the week I spend a great deal of time at home. The outings I do take are well-planned and orchestrated. This can be tiresome and feelings of loneliness can loom. I am happy and I cherish the time with my children, but the four walls and roof that surround me can, on occasion, have the feeling of a jail cell. Even though Dylan is now in school a large portion of the day, I have to accept that I have to be available at all times. In these moments and over time I have learned to take a deep breath, close my eyes and talk to God. Sometimes our talks are more like fights and other times there is a great deal of laughter! I have often wondered about this time with God, where He was taking me and why it seemed to be taking FOREVER!

Over the past two years, things have slowly started to change for a variety of reasons. Through the insight of an amazing author and speaker, Jan Johnson, the past nine years have been a time of solitude with God. He held me captive, so that I might be flat on my face, seeking Him in all things. There have been so many times when I wanted to write and share, but had not been released to do so, at least not on a platform like blogging.

The Lord has provided the opportunity for me to share our story many times since Dylan's birth. I have enjoyed these moments immensely. Our story grows and deepens with each passing year of marriage, with each child that joins our family and with all the trials and triumphs that we experience, both individually and as a whole. I have realized that while I love being a wife and mother, I also love to share with others about my journey as a special needs mom and what the Lord has taught me through this experience.

The past nine years have been both incredibly difficult and rewarding. I have learned a great deal and know the Lord continues to work in my life and the life of my family. I was meant to be a wife and mother, but I am also meant to write and share. There is a time to be fed and a time to give. It is time for me to give. I have no doubt the Lord will periodically call me into solitude with Him, but that time is not known. Now it is time to write.

Sunday, April 4, 2010

Out From The Sea

As first-time parents, Rob and I had a stack of baby name books. We sifted through them, going round and round why this name would or wouldn't work and making list after list. To simplify things, and ensure the happiness of family and friends, we decided to find out if we were having a boy or a girl. Eventually, we stumbled upon - and agreed on - the name Dylan...but kept it a secret just for fun. We LOVED the name and there would still be some element of surprise for everyone!

We looked at the spelling variations and preferred "Dylan" over "Dillon". There was no particular reason. We just liked the way "Dylan" looked. When we looked at the meaning of the name Dylan, we weren't that impressed. We consulted various name dictionaries and these were some of the meanings: "from the sea", "son of the sea", "god of the sea", "out of the sea". It wasn't anything special. Many parents choose a name for its great meaning and we actually felt a bit guilty that the name didn't have one. Regardless, we had fallen in love with the name and that was that.

We couldn't wait to meet Dylan. It was exhilarating to see him for the first time. The name we chose finally had a face...and red hair! We were even more excited about the next step: to have him dedicated. As Christian parents, this meant a great deal to Rob and I. We had the privilege of dedicating Dylan when he was just three weeks old. To make Dylan's dedication even more memorable, it was done in the church I had grown up in and where Rob and I had been married. On Sunday, December 31, 2000, we had the honor of giving Dylan back to the Lord during the morning service.

When I think back to this day, it was truly monumental in shaping how I saw Dylan and his future. It shaped how I would approach my future and whether or not I would choose to be obedient to God. Rob and I stood on the church platform surrounded by family and friends and placed Dylan in the arms of our Pastor. He took Dylan and began to speak. I do not recall his words exactly, but as he shared, I realized just how great God is.

The pastor explained that in preparation of the dedication that morning, he looked up the meaning of Dylan's name: "out from the sea". He said that the Lord revealed to him that Dylan had a great purpose. "The sea" represents humanity and Dylan was going to rise up and stand out in society. Dylan was going to rise up "out from the sea" and teach people.

Rob and I were numb hearing this. We simply liked the name and felt kind of guilty that it didn't have much spiritual meaning. It never ceases to amaze me how the Lord orchestrates things...right down to choosing a name.

As the years have passed, Dylan does stand out. It is hard to miss his striking, red, spiked hair...which I find comical because throughout my entire pregnancy I said he'd be a red head. I've actually been asked if I dye his hair! Add the Down syndrome and he's definitely hard to miss. God created Dylan specifically to be a testament to His power and glory...and I suppose to turn heads.

How would I embrace this? That was the real question for me. Would I choose to shelter Dylan from a cruel world that wanted to ridicule him or even question his existence and his right to life simply because he was different? Rob and I chose to wrap our hearts around Dylan and embrace all that comes along with him. We go about our daily lives just like any other parents would do with their child. The difference is that Dylan is stared at...and we are stared at. People almost always take a second look. It's human nature so stare away! Look at my beautiful boy who walks, talks, laughs, lives, loves and enjoys life to the fullest! The world has a stereotype, but every day Dylan rises "out from the sea" to challenge the human race to re-think their definition of something called Down syndrome and the people who just happen to be living life with it.