Sunday, January 9, 2011

Reality Check

Since beginning this blog, my ultimate goal has been to be open and honest about our life as a family with special needs. While I have attempted to keep my wording "friendly", the contents of this entry may turn the stomachs of some who read it. It deals with our recent experience with Dylan and the stomach flu. Having said that, this is a real aspect of our life and, as always, God is at work in my life.

Every now and then, I get reality checks when it comes to Dylan's development - emotionally, physically, mentally and socially. I am fully aware that Dylan ranges anywhere from a three year old to his current age of ten. I rarely think much of this range - it's simply who Dylan is. But this weekend I got a huge glimpse of where he's really at in certain areas. It's been hard to swallow.

On Saturday morning, Dylan, Jeremy and Savannah all awoke with the stomach flu. Gregory had just been through it and it was looking as if he might be the only victim. I was wrong. I woke to hear Dylan wailing in his bedroom. I opened his bedroom door and found him covered from head to toe with vomit and well as his entire bed area and the floor. I soaked in what awaited to be cleaned and am fairly certain I will never be more thankful for our tile floors. Within seconds of discovering Dylan, I heard Jeremy yelling and crying from his bedroom. It was gonna be a long day. I hadn't had a chance to check Savannah but if she hadn't started in yet, it was gonna happen - soon.

I told Dylan to stay put and that I would be right back. I had to get Rob up - who, off course, was still sleeping soundly. Within moments, I was back in Dylan's room. I grabbed one of the many packs of baby wipes in our home and undressed him. I realized I had to get his feet and hands wiped down before I could take him upstairs for a shower, or else we'd be cleaning the carpet as well.

I managed to get him upstairs and handed him off to Rob for a shower. Jeremy was next. Within the hour, we had three sick siblings bathed, dressed and laying on top of blankets on the couch, with towels surrounding them on the floor. Rob collected bedding in trash bags and lined them up to be rinsed out prior to entering the washer. Things had settled, but only for a moment.

I suspected Dylan needed to use the toilet and had Rob take him. I needed to get the laundry started - I had at least seven or more loads to do. They entered the bathroom and Rob helped Dylan undress. Although I wasn't in the bathroom initially, I could hear Dylan throwing up and sensed Rob's patience was being tested. It was time for mommy to intervene. I entered the bathroom with Rob scrambling to find something for Dylan to throw up in, as in that same moment, Dylan had begun to have diarrhea - except he wasn't sitting on the toilet. Rob managed to get him seated on the toilet and I got a bowl placed beneath his mouth and then quickly ushered Rob out of the bathroom.

I knelt beside Dylan, holding the bowl in front of his face. In this moment, even though Dylan is the size of a ten year old, he was really two, maybe three, with how he was able to handle himself mentally and physically. My heart broke for my sweet boy. He was confused with what his body was doing. He was overwhelmed and could not communicate his need to both throw up and use the toilet, even though he can speak fairly clearly. He was weak and tired.

As his mother, I was overwhelmed with a wide variety of emotions. We've made huge progress in regards to toilet training Dylan, but, as I sat in the bathroom, I realized just how far off we are from complete toilet success. My mind drifted to how I had found him that morning. It was obvious that he had thrown up more than once, but Dylan did not grasp that he should go to the bathroom to throw up or poop or find us for help. He just cried.

Obviously, Dylan has Down syndrome. However, I have long suspected he has Autism as well. It is typical for individuals with Down syndrome to have Autistic tendencies, but some do have a medical, dual diagnosis. No, Dylan doesn't have an "official, dual diagnosis", but I know in my heart he likely does. Whether or not we should pursue the "official" title is debatable. Dylan already receives all appropriate services and many of the techniques used with Down syndrome are the same ones used for those with Autism.

Many of Dylan's peers also have Down syndrome and there is no doubt they are all very different in their development. However, many of the areas that Dylan continues to significantly struggle in are areas that many with Downs begin to out grow by his current age of ten. In the research I've done, these areas are more "Autism related" than "Downs related". My experience with Dylan this particular morning was no exception.

After Dylan finished using the toilet and stopped throwing up, he got up. I got him cleaned up, re-dressed and settled back on the couch. Now it was time to go back to the bathroom and begin cleaning it. As I scrubbed the floor, toilet and removed the rugs to be washed, my heart sank and reality hit. Putting Dylan in underwear and sending him to the bathroom completely on his own is still very far off. His ability to handle himself when severely sick is even farther off.

As the morning progressed, I continued to get reality checks. I rinsed out all bedding and clothes and had specifically decided to do Dylan's last. As I began to pull his bedding from the bag and rinsed them, I finally came to the last item - his sheet. It was covered in diarrhea, and honestly, I don't know how it happened, as Dylan was fully clothed when I found him. I looked at Rob and said, "I just can't do it. I don't have it in me to rinse this sheet out....again". Into the trash it went and a trip to store would come later that day. I knew it wouldn't be the last item I'd throw away due to a massive Dylan accident. I always salvaged what I could in situations like this, but I have thrown away numerous clothes, bedding and linen items over the years. He even managed to destroy two playpens by the age of three due to accidents.

I thought of my other children and their development. Jeremy is six and is quickly learning that when he has the stomach flu, his goal is too aim for the bathroom or nearest container. Greg practically potty trained himself at about age three, so he's not far behind, and Savannah is just where I'd expect her be....and this is the same spot where Dylan is, which tears me up.

With each passing day, Dylan grows - sometimes by leaps and bounds, but more often in baby steps. I find myself questioning myself and wonder what more could I be doing - I want to be the best mother for him. I know the Lord chose to place each of my children and I together for a purpose and I ache to see the bigger picture, especially when I reflect on the moments I've described above. But that's not possible. All I can do is push forward and have faith that the pieces will continue to fall into place, just like all the other pieces I've seen put together in the past ten years.

Sunday, January 2, 2011

Three Picture Albums

I imagine he's seated across from me. Between us lay three picture albums. The first is full of pictures showing a boy who is growing and thriving and, in the world's eyes, is perfect. He is a picture of excellent health. It is clear he is mine - his physical features resemble those of his siblings and parents. He is surrounded by love, joy and peace. This boy is the desire of my heart. He is not made fun of by those who live in this world with him. He does well in school - he has favorite subjects, but can pass them all - even those he's not so fond of. He can ride a bike, jump, skip and hop. His fingers hold a pencil without issue and his penmanship is nearly ideal. He eats and drinks and pizza and sweats are always a hit....he is a kid, after all.

The second album show pictures of yet another boy. The life he leads is far different than that of the boy in the first album. His physical features make others take a second glance, but generally not in a positive way. He is often criticized and, while they refrain from saying it aloud, they question whether or not he should have been born. He suffers from frequent colds in the winter. He enjoys school and loves his friends and teachers, but academics are challenging. He spends hours practicing how to hold a pencil, pronouncing words correctly and needs full assistance on the swings...pumping his legs is simply not something he can do yet - and it's hard to say when that day will come. He enjoys mealtime, but it's not without challenge...his protruding tongue pushes the food out, although he works hard to keep it in. There is no doubt that the simplest, day to day activities are a struggle for him. But he is loved and happy. I ask the man before me where his family is, but I am told it is yet too be decided.

I open the third and final album. I flip through it - twice. But the pages are empty. There is not a single picture in the entire album. Confusion overcomes me. I look up and stare at the man seated across from me. As I stare into his eyes, I understand completely. I remember a discussion we had years before - about the little babes that begin to grow within their mothers womb. These mothers are faced with news, but it is unwelcome. These mothers do not know the man seated before me. They are given one-sided information. They are given choices, which may result in empty picture albums. Some of these children are walking on streets of gold, others are bouncing around from home to home, their final destination unknown. I remember what I told him, what I said I was willing to sacrifice if he would give me that child, so that it may know pure love and acceptance, regardless of the "imperfections" that exist.

I look down at my growing belly and place my hand upon it. I stare as I feel the babe within me move about. While I know his over all health is good, I can not yet see the pictures that will fill his album. I know the desires of my heart and so does the man seated before me. I love this child, completely and unconditionally. I have no idea what the future holds for this unborn child - and won't for nearly four more months. As I look to the future - the unknown, I have a choice to make. Will my mind be consumed with "what if"or "your will be done"? There is no doubt it will be a daily struggle - it already has been. But as I lift my eyes from my belly and rest them on his, I am at peace.

On occasion, my eyes drift away and in those moments I am overcome with fear, anger and frustration. I remind myself to place my eyes back on him and the moment I do so, I am once again overwhelmed with his peace. I again feel joy and excitement towards the birth of my unborn son. No, I have no idea which picture album will be added to our family shelf, but I do know that whichever it is, the pictures within in it are perfect. It is a choice I must make daily, but if I take it one day at a time, as difficult as that may be, triumph through him can prevail.