Sunday, March 13, 2016

Reflect on How Far You Have Come

Since Josie was our first child, I took for granted how much effort and energy was invested in teaching her basic skills.  When Merryn came along, I was amazed – things we worked so hard to teach Josie just came naturally to Merryn.  And Lydia seems to pick up on things even faster because she wants to do everything her big sisters do.  
It’s easy to see the contrast between the length of time each child takes to acquire a skill and to get frustrated by Josie’s delayed pace.  I have my moments I wonder if Josie will ever be able to get dressed without assistance, use the restroom without prompts, or master proper pronoun usage. 

 When I get consumed by the frustration, I stop and remind myself that I had moments when I wondered if Josie would ever eat orally.  For YEARS Josie was fed via G-tube.  In the picture below, it appears as though Josie is looking at a book with Aunt Leanne, but look closer.  Do you see the tube hanging beneath her?  She's actually "eating."
As a result of her G-tube feeds, leaving the house with Josie was not as easy as dumping some Cheerios in a zip-lock bag, grabbing a bottle, and darting out the door.  Four times a day, Josie would be perched in her highchair connected to an enteral feeding pump, receiving her nourishment through a Mic-Key button in her abdomen.  Anyone who supervised Josie had to be trained on how to program and connect the pump.  
 As a baby, Josie's wardrobe was determined based on clothes that allowed us easy access to the port in her belly.  As she got older, her wardrobe was determined based on clothes that denied Josie access to the port, because pulling out her Mic-Key button could quickly land her in the operating room having it replaced surgically.  That was a scenario we desperately wanted to avoid so Josie owned onesies in sizes "Newborn" through 4T (I bet you didn't know they came that big, did you?).  
The G-tube was such a huge part of our lives that I had days in which I couldn't envision a future without it.  Even when we embarked upon the path to end Josie's reliance on the G-tube, we had no idea how long and taxing the journey would be (you can read more about that HERE and HERE).  It was difficult.  It was discouraging.  It seemed impossible.

Now, I set food in front of Josie, just like I do with her sisters, and she manages just fine. 
We can even leave the house empty-handed because I know I can get Josie a snack from any given vending machine/gas station/drive thru and she'll eat it.  That enteral feeding pump that once ruled our lives is something that rarely crosses my mind now.  It's in the past.  We've moved on.
I remember the concern I felt when we were building a two-story house and Josie couldn’t climb stairs.  I would wake up in a complete panic with dreams of accidentally leaving the baby gate open and Josie being at the top of the steps.  Living in a two-story house meant that ascending and descending stairs was no longer a gross motor ambition; it was a safety requirement.
 We worked and we worked and we worked at it.  Josie hated every minute of it!  I worried that Josie's lack of motivation would mean that she would never acquire that skill.
 But fast forward a year and Josie descends the stairs independently every morning.  And with each step, she pauses and yells some sort of shameless self praise “Woo Hoo!  Good job smart girl!  Good job independent girl!”  Check out the videos HERE.
In parenting children, especially in parenting children with special needs, it's easy to get hung up on the deficits, gaps, and frustrations.  We're all working to raise our children to be as independent and as self-sufficient as possible and sometimes the contrast between where we are now and where we want to be is so discouraging.  That's why it's important to take a step back and recall past obstacles and to celebrate the progress that we've made.  In reflecting on the journey from "daunting challenge" to "mastered skill," we are reminded that this is, indeed, a journey.  And we are, indeed, moving forward.  Sometimes the pace is slower than we'd like, but we will get there.


  1. Josie:

    Yes, being stair-conscious is being part of your smart and your independent.

    [And Merryn's and Lydia's].

    You have every right to be proud of yourself.

  2. Be very proud of Josie and yourself!!

  3. Wonderful piece!!! It just shows what can be achieved with dedicated parents!! You go Josie!!!👏🏻👏🏻👏🏻

  4. Excellent post, and a good reminder to all us parents to be proud of our little ones' accomplishments, no matter how big or small. Josie has come so far - woohoo!

  5. Wow I so needed this today :) I have been trying to potty train my almost five year old for YEARS and get overwhelmed. Sometimes that baby with an NG tube and oxygen canula slips my mind. I never thought I would leave the house without feeding supplies and an oxygen tank! Yay to kids doing so well (and the little siblings who turn out to be some of the best therapists ever)

  6. I remember so many of these past posts about Josie and her gross motor allergies and feeding issues, your hard work has definitely paid off. Congrats, and this perspective is so well layed out.

  7. Excellent post and a great reminder to us all.