The Right Direction

After over a week of poor feeds, Charlie has resumed eating. Everyone (doctors, therapists, and others) have their own theories as to why she refused to eat (teething, stomach bug, reflux, poor motility, etc) but no one knows for sure. The important part is that she has resumed her consumption of calories. I could not be more relieved.

On a completely different note, a mom brought her little one home from the NICU this week. She wrote a post about how difficult she finds things. I find special needs parenting to be hard and I’m not sure that it gets better.

However, the good news is that parents get better at it. I noticed that my husband and I have developed a skill set unique to micro preemie parents. Learning the medical nuances, keeping up with the myriad appointments, and fine tuning household adjustments are the parts that merely take time to learn or figure out.

On the other hand, there is another aspect in which my feelings fluctuate. In the beginning, I found it impossible to deal with outsiders. It has gotten much better for me since the beginning. Despite this, I still have those occasional exchanges that I find painful.

They can take many forms.

For example, it happens at the doctor’s office after a successful weight check. My delight in my baby’s growth is crushed when some outsider points and squeals, “Oh, she’s so small!”

Also, my heart sank this week when it seemed every baby that is Charlie’s adjusted age became days away from walking. In the meantime, my goal is “to keep her hydrated and breathing”. I wondered why we were in reverse while others were cruising so far ahead.

I know that we have been on a journey that only a handful of people understand. Nevertheless, there are days (especially days I’ve regressed to survival mode) those things are like a blow that knocks the wind out of me. I do not know what the answer is. Maybe fewer lousy days?

I suppose it is too soon for me to expect things to have calmed to a state of what we will consider normal. Perhaps, time is not finished with me and my growth into special needs parenting.

No matter, I won’t let it overshadow the good things. Now that Charlie has resumed eating, I can breathe easier. I also want to say, “Welcome home Agnes!”

daddyslap

Charlie sitting on her daddy’s lap and helping him with his work this morning.

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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

3 responses to “The Right Direction

  • judy

    You are so sweet to link to my post! We are actually thrilled to have Agnes home, despite what I may have written in a moment or two of weakness. I’m glad Charlie has started eating again. Watching Agnes struggle to drink even 10 ml from a bottle makes me think anew about what we take for granted. I never thought much about eating and drinking until I saw my daughter struggle so much to do it.

    Like

    • woodra01

      I never for a moment thought you were less than thrilled (I apologize if I made it seem that way). 🙂 I am thrilled to be Charlie’s mom but it has really been a challenge. There are so many ups and downs. I never knew what “being overwhelmed” or “overcome with emotion” meant until I had her.

      Like

  • lifeoftransition

    You guys are doing great. Sometimes breathing and eating is all they need to do for now. yes the special needs world is different, its also exciting and an adventure all on its own.

    Like

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