Sunday, May 30, 2010

They Don't Belong to Me

In the early days, weeks and months following Jeremy's birth I recall spending numerous, midnight feedings in deep thought. I was two for two. Dylan has Down syndrome and Jeremy could not father biological children. I recall sitting and holding him and talking with God, well, it was probably more like arguing.

So many of my dreams were being fulfilled, yet so many were being shattered - dreams that I did not even realize I had. Yet God was opening my eyes and showing me that they were my dreams, not His. Before I knew it, Jeremy's baby dedication was upon us. As we stood before our church congregation, I realized Jeremy does not belong to me. Neither does Dylan. They are vessels of the Lord. He has entrusted each of them to me to love unconditionally and raise them in the ways of the Lord. But at the end of the day, they are His and He has great plans for each of them. In the medical world, Dylan and Jeremy are flawed, yet the Lord has designed both boys for a greater purpose and each of their "flaws" are a significant part of this plan.

I knew my children didn't belong to me - it was why Rob and I chose to have them dedicated. But standing in the church that day, surrounded by family and friends, I realized just how significant this action was. I make mistakes daily. I want to be the perfect mother, but I can't - it is impossible. In many ways, we were admitting this by way of the dedication itself. We were making a public proclamation that we want what God wants for them. We were asking for accountability that we would remain faithful to God in all of the choices we would make for our children.

As time has passed, I think of my own parents. I had been dedicated as a young baby. When I became a parent for the first time, I know it was difficult for them to see a child with Down syndrome placed in my arms. Their hearts ached again when Jeremy was born, knowing in the world's eyes he too was imperfect. They had raised me in the ways of the Lord. I had come to know the Lord on my own in my own time and was living my life for Him. Why would He choose to bring the daughter they loved so much such great heartache and so many challenges? The irony in it all - that is exactly why the Lord gave me the opportunity to be Dylan and Jeremy's mother.

They had given me back to Him and said "Lord, she's yours, do as you will" and He did. They sought Him when they raised me - in all things - both the good and the bad. My parents remained constant to Christ and through that I have learned to lean on Him alone in times of need. So while Dylan and Jeremy's diagnosis are heart breaking, I see that the Lord is in control, not me. With His guidance I can handle all that lies ahead. I cry for my children. My heart aches for what they can not do. But I also rejoice. I rejoice because each of my children belong to God and His purpose for them is great. None of my children are "mine" and knowing that, while it is terrifying a great deal of the time, comes with a peace that is indescribable.

Sunday, May 23, 2010

Statsitics T21

There were moments, in the early days following Dylan's birth, were I seriously wondered if he would have any siblings. I always envisioned having a large family. Four children was the ideal in my mind.

One night, shortly after bringing Dylan home, I sat on the couch and wept as I nursed him. I looked up and saw Rob leaning over me and he asked what was wrong. I was questioning whether or not Dylan would be our only child. I was questioning everything I had ever wanted and dreamed of in a family.

We had many doctor appointments in those early days. One was with the Genetics Department at Stanford University. If I could use one word to describe the experience it would be "comical". We checked in and waited just a few moments until about 6 people walked in! We could not imagine why there were so many young people interested in our son.

It turns out that the genetic counselor-doctor had five Stanford medical interns with him. None of them had ever seen an infant with Down syndrome. They ALL asked if they could touch Dylan's head. Rob and I looked at each other, puzzled, but agreed. Apparently, all babies with Down syndrome have perfectly round soft spots while "normal" babies always have oval soft spots. They had only read about it in their textbooks but had never seen it first hand. They each took turns touching his soft spot. This made our day. I wanted to burst out laughing!

We did not really understand what the appointment would involve when it had been arranged for us. We already knew that Dylan had Down syndrome. We knew it was the most common type: "Trisomy 21”, not Mosaic. There are differences. We knew it was non-genetic Down syndrome, meaning that it was completely random. In fact, this is actually the case for approximately 93% of all Ds births. He had also already been seen by the ENT, Ophthalmologist and Pediatric Cardiologist

During the appointment, we were asked why had we opted out of prenatal testing and a general family history was taken. They went over things that Dylan might experience some day. For example, individuals with Ds are more prone to Leukemia as a child and Alzheimer's as adults. Ear infections, hearing loss and poor eyesight are common. Low muscle tone would impact development. Some children with Ds experienced teething later and their teeth were likely to come in very randomly - we DID experience this, by the way!

Some of this we had heard prior and some of it was new, but none of it intimidated us. I think our attitude caught them a bit off guard. Overall, we were ok with Dylan's Ds. We knew why - it was the whole God factor, but they had no idea. We tried to interject our faith when we could and I can only hope we planted a few seeds.

The biggest question we had that day was, how would this impact expanding our family? What was the likelihood of having another child with Down syndrome? At age 21, I had a 1:1140 chance of having a child with Ds. Once you have a child with Ds, your chances jump to 1:100! Actually, the reported incidents of multiple Ds births to the same mother are very rare. I've met a few, but it is rare.

At the end of the day, I knew I wanted more children and so did Rob. God saw the desires of our heart and that was to have a family - a large one. We knew the risk but we also knew God was in charge and that He would see that our next child was just as perfect as Dylan was.

When Dylan was well over three, he became a big brother. God gave us Jeremy. He even made Jeremy specifically for Dylan, in more ways that I ever thought imaginable. To the naked eye his health is perfect and he is developing like any other little boy who is nearly six years old. Yet, underneath the surface is a little boy who can not father children. There was 1:7500 chance Jeremy would be born with the condition he has. Overall, he's extremely healthy. I pray daily for the spouse he will marry (if he chooses), but he will not become a father…at least, not in the traditional sense.

Once again, we had a lot too soak in. Dylan has been born with a visible disability and Jeremy with one that is unseen. Both would greatly impact their lives. They have something in common that I never imagined they would: the inability to father biological children. Dylan's is a conscious decision while Jeremy's was determined by his Maker, our Heavenly Father. Once again, a puzzle piece was being placed in the bigger picture that the Lord is putting together for our family.

Sunday, May 16, 2010

My Boxing Gloves

In my closet you'll find a pair of boxing gloves. Well, maybe not literally, but when I close my eyes, I imagine they hang from my closet door on a hook designated just for them, within easy reach. They were once a beautiful bright pink, but now they're scuffed and have a fair amount of stains from a lot of blood, sweat and tears.

I don't like to pull them out. However, on a occasion, usually around this time of year, I pull them out and and dread the thought of putting them on. You see, it's IEP time. IEP stands for Individualized Eduction Plan. The IEP is used for children with special needs to determine an education plan designed specifically for their needs and unique learning abilities. The meeting lasts in the neighborhood of two to three hours. I have a love-hate relationship with this meeting. It is certainly necessary, but there is no denying it is not fun. I'm sure all parties involved would agree!

I debated writing about this topic. It's a sensitive subject and involves a number of people. Yet it consumes my every day. It determines what Dylan does on a day to day basis at school. The IEP is Dylan's education plan. It will follow us until the day he graduates from high school. I share for those who experience them first hand, I share for those who know nothing so they might learn and I share for others so they might see where parents are coming from.

First and foremost, Dylan is blessed with an amazing school district. Nope, I'm not just saying that. We pray daily that the Lord keep us here for many years because the thought of leaving our district is a nightmare. Our district isn't perfect, but perfection doesn't any city, county or state!

There is no doubt the IEP is an essential part of Dylan's academic, social and emotional development. Through it and amazing input and insight from many individuals, Dylan is growing daily. That doesn't mean the process is a pretty one. A solid ten people are a part of what we refer to as Dylan's IEP Team. That's a lot of folks, a lot of input and even more reports and paperwork. It's a formal event for paper, pens and signatures.

At our yearly IEP - for us it's this upcoming Thursday - we are reminded of exactly where Dylan is at. It's not an easy pill to swallow. Although Dylan is well over nine, I often say he ranges in age from three to nine, depending on what you're looking at, when you're looking at it and his particular mood at any given moment. Obviously, this makes planning his placement challenging. There's the SDC program. SDC represents the Special Day Class, which is made up of various children with various special needs. Then there is inclusion, which is where you place a child with special needs exclusively in a traditional classroom. We are personally attempting to do a combo of both, often referred to as Mainstreaming. It's hard and I feel like I'm constantly on my toes.

I want Dylan to have the best of both classes, as each one has so much too offer. Combine these choices with the IEP team as a whole and you get all sorts of input, opinions and options. All are relevant and important. But, at the end of the day, Dylan is my son. Right now he's nine. Eventually he will be nineteen, twenty nine, forty nine and so on. It can be difficult because I often feel as though the bigger picture isn't always being considered. I believe his IEP team tries to see it, but unless you live the life of a special needs parent or something close to it, I don't believe anyone - family, friends, educators, doctors, therapists - can ever really get it. I'm not upset by this, it's just the simple truth.

So, here I am again, prepping for another IEP. I'm making lists. I'm thinking and pondering. I'm trying to see all growth that Dylan has accomplished this past year while also seeing how big the gap is in certain areas. Dylan won't become a heart surgeon. I highly doubt he will attend an Ivy League university. I do believe he will attend a college of some sort and hold a job. I believe, if he chooses and the Lord brings him the right person, he could marry and even live independently. So how do I accomplish these long-range goals for Dylan in these early, formative years? What class should he go to? I know he can't do division - yet, but want him to act appropriately with his "normal" peers. I want his "normal" peers to "get" him and be able to co-exist with him. It's likely that his "normal" peers will be his co-workers and employer someday.

There is no perfect answer. There never will be. When I get up in the morning and get Dylan ready for school, all I really want to do is drop him curb side, wave goodbye and watch him walk to class on his own. I don't want to have to check my cell phone for missed calls or the answering machine for messages on a regular basis because this or that might have taken place at school and I have to "address" it, in whatever fashion that might be. This is the "yucky" part of being a special needs mama.

Dylan is my son, my baby, my first born. It is my motherly nature to fight for him, protect him. I want the world to see him as I do. But in order to do so, now and then I have to put on those pink boxing gloves. We all have our own set of eyes and I have to show the world what it is I want for him and how I believe I can get him there. It's not an easy task and it often takes some convincing, a few soft punches and swift maneuvering. I'm not trying to be difficult. I want to build bridges, not burn them. I've pulled out my gloves and put them in my purse for our yearly IEP. I hope they don't have to make an appearance. In fact, I love it when I see dust accumulating on my pink boxing gloves. It makes me smile, BIG!

Sunday, May 9, 2010

Special Mothers

Today is Mother's Day. Every year, around this time, I receive a variety of emails which include writings which focus around mothers of children with special needs. I love them all, but one in particular always tugs at my heart. I've posted it below - read it and then read it again. You're traveling a road less traveled. It's a hard road. It's a road filled with lots of pot holes and unexpected twists and turns. Tears - lots of them - are shed along away. Yet there is laughter and love. There are days when the road feels like brand new pavement. Lessons are learned and lessons are taught. And as difficult as the road may be, it is a road I wake up too daily, thrilled that I was chosen to travel it.

Mothers of Disabled Children
Written and Published by Erma Bombeck on May 11, 1980

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth: son: patron saint...give her Gerard. He's used to profanity."

Finally he psses a name to an angel and smiles. "Give her a blind child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly." says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."

"But Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with the child less than perfect. She doesn't realize it yet, but she is to be envied.

She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles. "A mirror will suffice."

Sunday, May 2, 2010


I used to manage a campground. One evening, when Dylan was about six months old, I had a lengthy conversation with a camper. Eventually the conversation shifted to Dylan and I shared that he had Down syndrome. She began asking me a variety of questions, which I welcomed. However, I was suddenly blindsided. She asked, "What is it like to raise a retarded son?"

To be completely honest, I have no recollection of how I answered her. I know the conversation ended not long after that, although this specific question was not the reason for the end of our talk. I know I spoke. I know I responded. The question that will always be in my head is, how did I respond? The Lord knows exactly how I answered and the words that escaped my lips that night where His. All I remember is standing there and thinking, “Retarded”. My son, in the world's eyes, is “retarded”.

It felt like a punch in the gut. It felt like a knife in my heart. I felt as though I could not breathe or talk. Somehow, I managed to finish our conversation amicably. In fact, I remember waving to her as we went our separate ways…even though I have no clue what was included in the final sentences we shared!

Hearing the word “retarded” took me back to my childhood. I was a young girl on the playground - running, joking and laughing with my friends. On occasion, the words "that's retarded' or "you're retarded" would emerge. My heart sank. Had I ever used such a derogatory term towards another peer who really did have special needs? Had they heard? Had a friend, sibling or parent heard? I do not honestly remember. I was not a "mean" kid, but I was a kid once and I am sure I said something inappropriate in this regard somewhere along the line.

Things can roll off our tongues so easily and we think nothing of it. I knew the woman meant no harm by her statement. She was probably in her mid to late sixties and came from a generation that had very little interaction with individuals like Dylan. Years before, individuals with Down syndrome or other disabilities would have been whisked away and placed in a institution immediately, unless the parents insisted otherwise (which was rare). The terminology she used was technically correct but she was uneducated through no fault of her own.

Times have certainly changed. My road of raising a "retarded son" has been much easier to travel than mothers who have gone before me. The comments that are made now are nothing like they once were. Still, my heart was shattered. When I look at my sweet Dylan, I see "Dylan" first. His Down syndrome is secondary. It is just a percentage of who he is. His IEP reads "Mental Retardation", yet I see a little boy who knew his upper and lower case alphabet by the age of three - in both English and Sign Language! From the time Dylan was born, he has been referred to as having Down syndrome or Special Needs. Those were - and they still are - the words that are socially acceptable today. The words “retarded” or “mental retardation” are still used today, but usually only in the medical or educational setting. However, even in these settings they are being seen less and less. The word "retarded" has many stigmas attached to it and it is these stigmas that hold society back from accepting those like Dylan.

Raising Dylan is no different than raising our other children. Can he be more challenging at times? Yes. Do we have to make modifications here and there for him? Of course. However, raising a "retarded son" is certainly not a death sentence or the end of the world, which is the picture I believe the woman I spoke with saw in her mind. So many "normal" people fear individuals like Dylan. People point and stare – and that is to be expected – but Rob and I work daily to embrace this aspect of our life.

I want to encourage you to ask questions. It is not easy, but there has to be a starting point. Life has awkward moments, but it is how we learn and grow. There is a movement called "Spread the Word to End the Word". It will not ever be illegal to use the "R" word, but it can certainly become socially unacceptable, just as other terms in various cultures and races have come to be. I challenge you to join the movement.