The Sweet and The Salty

And So We Just Swam

By Jody September 3, 2012

One of the things I have been thinking about quite a bit is my role with Champion and exactly what it is. I know that sounds a bit strange since obviously I am his mom, but since we learned about his diagnosis, I have added advocate, therapist, nurse, appointment scheduler and paper work filler outer, to name a few, to my role as mom. I find that I have often done a pretty good job of staying on top of the above mentioned aspects of my role with him, but I’m not really sure I have taken the time out to just be “Mom”.

In the back of my mind I am always thinking how an activity can be turned into a therapy, what skill it will enhance for him. Every activity is carefully planned as to not disrupt his feeding schedule, his sleep schedule, to allow optimal time and energy to devote to working on milestones. And those things are important but…my role with him is more than that.

Lately I find myself just wanting to be with him, to get to know who he is, to spend time with him without a specific agenda, without a specific goal in mind. I want to enjoy building a bond with him. To let loose and not focus so much on everything always having to be therapy in some way or another. To allow my time with him to just flow. To say who cares if he wants to knock the letters on the ground and laugh instead of working on his fine motor skills by picking them up and releasing them into the bucket.

I want to take care of his needs, but also be able to throw the hidden purposes out the window, and just enjoy him as my son. I think he really needs that from me and I think I really need that too.

So…yesterday we just swam. And had a blast!

I put aside the excuses that he was too tired, he hadn’t slept good the night before, his feeding schedule would be off, we wouldn’t be able to do his after nap therapy routine, I don’t have the energy to,etc and just swam. And had so much fun.

First though we had to get prepared.

I had always resisted swimming in the past out of fear. Early on a Dr. had told me that Champion could get poisoned from too much chlorinated water getting in him through the sides of his g tube opening. So I just didn’t take him swimming.

But then I talked to other moms who took their kids who were g tube fed swimming all the time and they said they just covered it with tegaderm and plastic wrap and didn’t have any problems. (Love learning from other moms.) So we got him all wrapped up.

Now he’s all ready to go.

At first he wasn’t to thrilled.

So cousin got in and tried to show him how much fun playing in the water could be.

Then she got distracted and tried to get his glasses.

Eventually he relaxed and started liking the water. (So I know this was just a fun time, but I couldn’t resist thinking how free his movements were in the water.) Here he is kicking his legs.

Back to the fun. We spun in a tube. (Not too much though, my ability to handle spinning has greatly decreased with age.) Champion really enjoyed the spinning!

Here he is just “chillin”.

Then we tried a slightly warmed hot tub. He wasn’t too sure about the jets and bubbles at first.

But he got used to it.

All in all I think swimming was a hit. For him and for me.

So moving forward I am definitely going to be making an effort to put more focus on my “Mom” hat and figure out what that looks like in the midst of the other roles.

I would love to learn from you! How do you balance the “other” roles you find yourself in with your role as Mom?

Linked at Pour Your Heart Out.

Linked at LoveThatMax.

Attitude is Everything

By Jody August 30, 2012

Everyday all of us wake up and have two choices. We can either focus on the positive things in our life or the negative. Each and every one of us has both, positives and negatives. Whatever we focus on is going to be the dominant one.

If I wake up and only focus on the things that Champion can’t do yet, on the amount of time and energy caring for him requires of me, and all of the things that I am unable to do as a result of both of these, the day ends up being not the best. However when I wake up thinking of the amazing things Champion has already accomplished, how much I enjoy being his mom, and the many blessings I have, these days end up being pretty good.

The thing is, most of my days consist of pretty much the same things. We wake up, get ready, go to therapy, do therapy at home, eat, do housework, nap, do g tube feeds. Not much on my to do list changes but my take on the day can vary greatly. Some days it is nearly impossible for me to accomplish all that needs to be done and some days I breeze through full of joy and zest for life.

I began to examine what was different about some days versus others. I realized that the old adage of how I was looking at the glass was at play. See the days that I had a zest for life I wasn’t looking at circumstances with Champion negatively. On these days I was full of expectation for the future, saw each day as an opportunity to help Champion achieve more milestones and saw the glass as half full. The other days the glass was half empty and empty is how I would feel.

I realized that I cannot control every circumstance in my life, but that how I respond to it is completely up to me. Every day I can decide to meet it with joy and expectation or I can meet it with negative thoughts from the gitgo. I have begun being more conscious of the decisions I am making regarding my day.

It is not always easy and I have to fight through some pretty strong negative emotions at times, but the days when I really make the effort to nip the negative thoughts in the bud, there really is a difference in the enjoyment of that day.

Let’s face it. Being a mom is rewarding but is also hard work. It can be draining. It can zap your energy, physically, emotionally, mentally, and spiritually. Add a child with special needs into the mix and it can become dangerously draining. Attitude is not always the only area that needs to be examined and tended to but it definitely needs to be a priority.

What tips do you have for keeping a good attitude in the midst of challenging circumstances?

Pieces of a Dream (Part 2)

By Jody August 30, 2012

When we were told that Champion had Miller Dieker Syndrome, meaning he is missing a piece of his 17th chromosome, we were sitting in his ICU hospital room as he was recovering from open heart surgery. The Dr. told us what the results of his chromosome test showed and gave us a rundown of the milestones they predicted Champion would never achieve (walk on his own, sit on his own, eat by mouth, talk, not develop beyond that of a three-month old) and an expected length of life which was heartbreakingly short.

While the Dr was talking to us, he kept looking intently at me. I think he was waiting for me to break down and start crying. However while he was talking I was listening to him… but I was also remembering a dream that I had that very morning, and instead of being completely crushed under the news we were receiving, hope was welling up in me.

That very morning I had a dream that there was a group of doctors standing outside Champion’s room and I heard one of them say there’s not as much to this as we thought, his brain is round not flat. In my dream the doctor then walked into the room to tell us the same thing. In this dream I saw inside of Champion’s brain and the word “Hope” in blood vessels flowing throughout his brain. The dream was so vivid and when I woke up that morning the first thing I did was tell Hubby about the dream.

I had no idea when I dreamt it that the Dr was going to come into Champion’s room that evening and let us know that Champion had Miller Dieker Syndrome and that one of the defining characteristics of the syndrome is a smooth brain, also known as lissencephaly. I had heard of that briefly in a program on disability I had watched prior to Champion’s heart surgery and in my own mind I pictured the brain being flat not round when it was described as smooth. When the doctor said that they expected to find that Champion’s brain was smooth, the dream I had that morning immediately came back to me and I knew that was not the case. We insisted that he be tested. The Doctors were sure also that they would find seizure activity as a result of him having the smooth brain and told us that they were sure that he had been having seizures all along and that we had missed it.

During his five-week hospital stay they did an EEG and found that there was no seizure activity. They did an MRI and found that he indeed did not have lissencephaly, however he did have deficient white matter which is causing his current delays. Many of the Doctors we were working with during this stay had never seen a child with Miller Dieker, (it occurs less than 1 in 100,000 live births), so they were very baffled that he was not lining up with what they knew about the syndrome.

Finding out about Champion’s diagnosis and the prognosis for his life was very challenging. In the beginning there were times when it was very hard for me to cling to hope and I did feel like I was being crushed. Even though he has not experienced many of the severe medical challenges normally associated with his diagnosis, there have been quite a few difficult, scary moments over the past three years. Helping him along with his development has been wearying at times. The care required with his g tube, multiple therapy and doctors appointments has been challenging. But there have also been so many amazing moments with him and we truly enjoy being his parents.

Prior to this I had never had such a vivid experience with a dream like the one I had before hearing Champion’s full diagnosis. I had heard of people having experiences like that, but never experienced it myself. But now that I have, the one thing that I continually go back to from that dream is the word “Hope” flowing throughout Champion’s brain.

I have clung to “Hope” throughout this journey and will continue to. “Hope” for my son’s future, “hope” for more miracles to take place, “hope” for him to be happy and full of joy, “hope” for him to have life abundantly, “hope” for him to know and experience unconditional love, and “hope” for life to be good for him.

Have you ever had a dream that brought you comfort and strength to go through a tough situation? If so, I would love to hear about it! Please share your experience in the comments.