Something I wrote about you

I entered a writing contest a while ago. The theme was, "I never thought I'd..." I did not win the contest or come anywhere near winning but I was proud of myself for writing and entering the contest. Thought I would share as I never thought I would be a good enough mom for Daniel:


When my daughter was born she was born ready to go. She was not going to let a cord snug around her neck slow her down. She wanted to move whenever she was awake. She was also so smart, that she knew if you were tricking her by pushing her in the stroller instead of walking her around at night. She either wanted to be outside or picked up and held in my exhausted arms.

My husband and I were delighted to watch her grow and she soaked up all of the information we gave her. I was lucky enough to be a stay-at-home mom for the first six months of her life. When I needed to go back to work, we found an awesome Spanish immersion preschool for her to attend and just like that she was becoming bilingual!

I went to work as a pediatric dietitian in a large teaching hospital where they treat very high risk patients. I was working with many children who had major health problems and delays. Dealing with this everyday made it difficult to see my daughter and think about what could happen to her. Something so simple could go so wrong. I hated to think about that and I struggled to see the parents of these children. I was so saddened to think about what they must be going through.

These parents were amazing and seemed to have strength wrapped up with courage. I looked at these parents in awe never once believing that I could do what they were doing. I thought that if I ever had a child with disabilities that I would be unable to be so strong. I was thankful that I had a very happy and healthy daughter. Whenever I looked at the parents of these children I would think about how lucky I was. I also realized how it can all go wrong in one second. Something that happens even before you realize you are pregnant. It could even be something that happens in childbirth. I would think about these parents and wonder how they could find the strength to go on and continue to love with a full heart.

These children were the most special in my heart too. They gave off such light and love that I knew their parents managed because of that alone. It was still difficult for me. I know I am a strong person having overcome many obstacles in my life, but I felt that I would not have that kind of strength.

I was glad when I started working with the adult population. At that particular time in my life, I was taking my work home with me. I would over analyze my daughter’s every sniffle, thinking she had some terrible disease. When working with adults I didn’t always have a picture of my daughter’s eyes in the eyes of the patient. I still kept those children in my thoughts constantly.

I had my own daughter to focus on though, and soon enough I was pregnant with my second child. I found the true meaning of the saying that “ignorance is bliss”, because I felt that I knew too much about what could go wrong. I figuratively held my breath throughout that pregnancy, but luckily my son was born after 39 weeks. He was perfect. He was nine pounds and the completion of our family. We had our beautiful daughter and our handsome son. I saw before my eyes, two children who would grow up and have fights along the way but as brother and sister they would always love each other. I saw a picture of my little boy chasing after his big sister, and of him one day standing up for his big sister if need be. It was all I ever wanted.

The first few months are always hard with a newborn. With my daughter, as I said, she was born ready to go. With my son it seemed he was pretty miserable for his first three months of his life. He had terrible reflux, so bad that he would wretch his head back so violently. He was so little, but in so much pain and he was so strong. We had him on medication and changed his formula but really most of the time was spent trying to keep him comfortable.

It seemed after three months though, he perked up. He was a brand new child who was smiling and laughing and feeding and sleeping well. We thought the worst was behind us and we began to enjoy this amazing little boy that we had been blessed with.
I should say that after having a second child you are constantly comparing milestones between your first and second. Our daughter was right on target with all her milestones and I started to look at our son to be right along with her. Logically I knew he would be different and that it was not fair to him to compare, but I fully expected that there would be little difference in the two siblings.

I don’t really know what struck me first. I think it was the fact that he would not grab for a toy, or maybe it was the obvious lack of control when it came to rolling over or trying to sit up at 6 months. He also had very little interest in toys. My mother took care of him during the day and she also noticed the lack of interest in toys and the inability to sit up or roll over or even reach out with his arm. At his six month well check appointment we talked with the pediatrician and she agreed and immediately referred him to Early Intervention. She also recommended that we talk with a Physiatrist or physical medicine and rehab physician. We were referred to one at the
hospital where I worked. The physiatrist was quick to order an MRI to see what, if anything was going on in the brain.

My son started seeing a physical therapist but around this point, my husband got a job offer in another state. Everything felt rushed, we had the MRI done and were quickly told of the results but not what they meant. We were referred to a neurologist in the area where we were moving and that was pretty much it. We moved, got set up with early intervention and went to the neurologist with the MRI in hand. A few weeks later, I was on the phone with the neurologist and he explained what our son had. He told me that even before I knew I was pregnant that my sons’ brain did not develop the way it should have. He has a smaller than normal corpus collosum and some other fancy worded things going on in the brain. Ultimately he has a diagnosis of cerebellar vermis hypoplasia.

Upon hearing that my son was not normal I was immediately picked up and transported to a new land. In this land I did not speak the language and everything and everyone moved in slow motion. I was alone in this land and was trying desperately to get back to a place that was familiar. It was as though I were in a pool of mud-trying to keep my head up and trying not to drown. What happened? How? Why? What were we going to do? There were so many unanswered questions. Would my boy ever crawl, walk, talk. What would he be able to do? The doctors couldn’t tell us. His therapists and teachers could not say. His future was a mystery, his prognosis, a guess.

We tried to make sense of it all. We started a blog and wrote our feelings. We leaned on family and friends to help us navigate this new land. We also looked to our son to help us. He was no different from the boy we loved before the diagnosis. In fact, he was the same little boy all along. We grieved but we saw in our son the wonderful boy that he is and we saw all the wonderful things he could do and was learning to do--just a little slower.

Our son and our daughter both have endless possibilities for their future. In fact, though our daughter has no diagnosis we still are unsure about her future as well. We just take it one day at a time. Our son is four years old and even though he doesn’t crawl or walk yet and he says only a few words, he is the light of our life. We love him and it is easy to take care of him.

As for me, I didn’t think I was strong enough. Like the moms I saw in the hospital, I never thought I could be that strong. Now I realize that it is not strength I needed to gain, but it is the love I had all along that will get us through this.

Hard to Tell

When my daughter gets sick, I am worried for her and feel bad for her and I am probably a little overprotective. She hardly ever gets sick and so when she is not herself, she is very much not herself and it is concerning. There is one thing though that keeps me from becoming beside myself when she is sick--she can tell me what is wrong. Daniel was sick yesterday. He vomited all day and was not keeping even the tiniest of fluid down. He was pale and had lost all of his energy and it was clear he was in pain every time he vomited (he would scream and cry right before throwing up). It was painful to watch but also frustrating to not be able to know from him exactly what was wrong. Even though he has learned a lot of words and can repeat a lot of words he hasn't exactly gotten to the point yet of really expressing himself and his thoughts and feelings. It is difficult to know what he is wanting or needing and there is always a part of me that worries that I am missing something and that whatever is wrong is worse than it seems. I am sure it is frustrating to his pediatrician who I called several times last night and I am sure I am overreacting in this situation but I cannot help it and won't stop it until I hear from Daniel himself that he will be alright.

Whatif

When I was a kid, the poem 'Whatif' by Shel Silverstein was one of my favorites. I felt connected to it in a lot of ways. Today I feel as though I could write a different version:

Last night while I lay in bed,
I couldn't sleep because of the Whatifs floating around in my head.
Whatif you were able to walk?
Whatif you were able to talk and have a conversation,
Whatif you were normal and moved without reservation?
Whatif you ran around and bugged your sister?
Whatif you got into things and destroyed items, mister?
Whatif you were able to tell us all what you were feeling?
Whatif you could get into your own bed in the evenings?
Whatif you were free to roam around on your own?
Whatif you were a normal 4 year old standing on your own?
Whatif you could understand everything I say?
Whatif other kids your age included you in their play?
Whatif you didn't need a wheelchair for transportation?
Whatif you go off and do your own exploration?
Everything seems so good and then the Whatifs come and
ruin my mood.

The things he says

Daniel has been talking up a storm and is very understandable and is also trying to repeat everything you say. He has his own little dictionary of words that he has accumulated and he tries to say all of the words he knows in one day--sometimes even at one time.

He loves singing too and loves it when we sing to him, sometimes it can be the same song sung over and over and over again. He really likes Dora, as in Dora the Explorer. Yeah, he is actually in awe of her and really loves to listen to the opening song. He is also very fond of Elmo and the Elmo's World opening song and after you sing it to him he will start it up for you saying, "La, La, La." He doesn't mind complimenting you after you sing either by saying, "good singing."

He is very good at listening to a song once or twice and trying to repeat it after that, for example the dreidel song he heard once or twice and now says, "I made it out of clay." He has also caught on to asking for what he wants by using his words such as, "Iwantjuiceplease." Honestly the way I wrote it is the way it sounds.

He has really come a long way in his communication and we are very happy about this because it is so nice to hear his voice and also hear what he has to say. For such a long time he didn't have the voice that he has now and it is so sweet.

He has been doing very well in preschool and we get good reports all the time. He loves going to school and he learns so much! We do keep waiting for him to walk but that could be never or it could be tomorrow. He is really close to standing for a second without holding on and he will "walk" with assistance and sometimes really well too. We will just have to keep working with him and take it one day at a time.

I thought I would write though and keep you all updated on the progress he has made just in the past few months with his speech. We are so proud of him and we know that he is very happy to be talking to us as well.

1 video ≈ 1,000 words

Though our posts have been infrequent, Daniel continues to make strides. This brief clip from this morning's field trip to the pumpkin patch, provides a great example of what our boy is able to do.

So Simple

Daniel has being doing great! He has adapted to a full day at school really well although he seems to refuse to take the naps that are apart of his preschool curriculum. Ah well, his teacher decided it was best to keep him bust instead. I received a call the other day from his speech therapist who said in one word: "Wow." She was amazed at all the words he is saying now. He will pretty much try to repeat anything you say to him. Not all things sound exactly like the real thing but he is getting very close. For example, he is really into Dora these days and he like to repeat the line they use for Swiper the Fox. Instead of "Swiper no swiping," and "Oh man," Daniel says: "No wiping," and "Ohman." Very close. We are so proud of him and he loves to talk and get attention and sing even. It is so great to hear his voice. Now we just need to work on getting him to communicate his wants and needs and then we will be golden.

We went to Sunday school with Alison today for a family celebration. I wheeled Daniel into the social hall where all the kids were working on crafts. A boy (about Alison's age) walked up to me, seeing Daniel in his wheelchair and asked, "what happened." I leaned down to talk to him and explained that even though Daniel is four, that he still hasn't learned how to walk or crawl just yet. The boy paused and thought about this for a minute and then said, "I'll teach him." Jason then took Daniel out of his wheelchair and the little boy (who had really never met Daniel before) held Daniel's hand while Jason held his waist and they walked Daniel around a little. I thought it was the sweetest thing and I realized that in this boys mind, the fact that I said that Daniel hadn't learned to walk yet made him think that all he needed to do was teach him. He was so sure of this. I found it very endearing and just so simple. Honestly, if only it were so simple.

Four

Yesterday you turned four years old. It amazes me the little man you are turning into.

Although my ultimate wish for you did not come true this year (for you to walk), you are demonstrating so much in other ways.

You are becoming quite the talker and will try very hard to repeat just about anything and everything you hear. You got the term happy birthday down, exclaiming to everyone who would listen: "Appy Bithday!" You try to say neighborhood and really come close with, "Neimo." It is exciting how you want so bad to communicate with us. You are getting there really.

You sing too, which is my most favorite thing. At first it was just a word here and there when we sang the rest but lately you carry the tune and string some of the words together. I really like listening to your lovely voice and think that once you get all the words down, you could be a great singer!

I love watching you these days, you are interested in exploring your world much more than you have ever been. This can be good and bad considering the fact that you really don't mind checking out EVERYTHING. I like to watch you play with toys and you've even begun to pretend play by picking up the sesame street telephone and holding it up to your ear and pretending to have a conversation.

Your turning four has made me very excited for the possibilities that lie ahead for the coming year. At school you are staying for the full day and I cannot wait to see how much you learn in that time. Because you turned four you are now eligible for a few of the programs that offer therapeutic horseback riding programs so we might try to see what you think of that. Again with your speech and communication exploding, I think this year will bring a real possibility of you communicating your wants and needs to us.

I do still believe you will walk, but I am not going to put a time frame on it this time. You will walk when you walk and that is just fine. You are doing just a fabulous job so go on with your little four year old self!