Balancing Hope and Reality

Yesterday, I had a meeting with Charlie’s services coordinator. We were readjusting Charlie’s therapy services as suggested by the developmental pediatrician from her latest assessment. While doing so, I had to establish new therapy goals. Despite all of Charlie’s most recent successes, I continue to find  it difficult to establish goals.

There are several reasons:

  • I do not want to jinx the roll Charlie is on. I am afraid to assume because she mastered one skill that the next will come easily. In the past, it seems we were confronted with more complications each time I dared to breathe easy.
  •  If I make the goals too easy the whole meeting is pointless. The process will have to be repeated sooner.
  • With any child, it is difficult to estimate where their skill level will be in six months. The task feels impossible when considering a developmentally delayed baby and there are many questions left unanswered.
  • I am afraid of the heart break that comes when a goal is too lofty. Sometimes goals can serve as reminders of what she can’t do.
  • It is hard to walk the line between hope and reality.  Finding the balance between what I hope for her future and what is our reality is often difficult.

To aid in the process, the services coordinator had a developmental milestone chart handy. I selected a few (corrected) age appropriate goals and signed the paper work. Most likely, I will not think about the goals until the next meeting. Honestly, I stopped following milestone charts and goals quite a while ago.

Instead, I look for the smallest signs of progress each day. For example, one more spoonful of food tolerated, one more movement attempted, one more sound made, or one more ounce gained. This way, I am prevented from feeling overwhelmed, heartbroken, or discouraged.

Through out all this therapy, Charlie and I strive to have fun. This is higher priority than mastering skills or reaching goals. Like everyone else, she only gets to be a kid once. It is true, each time Charlie achieves a new milestone it is amazing.  However, skill set is meaningless if she is miserable. I am a big believer that quality of life is not dependent on one’s ability.

In the end, no matter how many of these services  meetings I attend, I am still flooded by thoughts, emotions, and angst by each one. I wonder if  these meeting stir up as many emotions for other preemie moms. Or is it just me?

IMG_0182

Charlie learned to use her sippy cup this morning. However, she can only really handle it while lying down.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

One response to “Balancing Hope and Reality

  • Katie Carr

    I think choosing goals is so hard! I have to do it with Zac’s IEPs and I felt the same way you did. The important thing is the goals can change as needed whether pushing forward or scaling back. I know you are proud of Charlie’s progress and I think it helps you have your blog to look back on to see how far your family has come!

    Like

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