chronic illnessfamily

When Parenting & Illness Collide: Overcoming Pressure When Parenting With Chronic Illness

Overcoming Pressure When Parenting With Chronic Illness
Two words that every parent dreads to hear.

Potty Training.

I don’t know any one person who jumps for joy when it comes to tackling the task of potty training their child.

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After Abby turned two, we attempted to begin to introduce her to the potty. We bought her a cute little pink potty. We bought the “Elmo Goes Potty” book to read to her, although she was the most interested in the stickers. No matter what we tried, she just was not interested which we finally came to accept. She would get there in her time.

The day she turned three something clicked. Hallelujah! She declared herself a big girl and proudly sported her big girl panties. Not only was she having success at home but she was doing great at daycare as well. We even started talking to the director about her moving up into the next class (which only happens when a child is fully potty trained).

I would say we were 95% there but then

My emergency obstruction surgery happened.

It all went out the window.

The eight weeks following my surgery where quite chaotic. My initial hospital stay was almost two weeks long. My parents helped keep her at night as John stayed with me at the hospital. They took her to the beach for a couple days to give her something fun to do before I was discharged.

Obviously once I was released from the hospital, I still struggled with pain and fatigue which made nearly impossible to be as active as I would have liked. I was on lifting restriction for weeks and my incision made snuggling difficult. John was doing most of the majority of the parenting at this point and while he tried to keep up the potty routine, Abby was no longer interested. Something changed.

It was also around this time that she started telling people that her mommy no longer lived at home but that I lived in the hospital because my belly was sick.

Six weeks after my surgery I landed back in the hospital with another partial obstruction. One night my mom brought her to visit. As it was getting close to time for her to leave, she had an epic meltdown. EPIC. Like something you only see in movies epic.

Once I finally got her calmed down enough to talk, she said she didn’t want mommy to be in the hospital anymore and wanted me to go home with her.

My heart shattered into a million pieces.

Obviously I’ve grown quite accustomed to how chronic illness has affected my life. After almost ten years together, my husband is not shy about sharing how he feels either.

But my daughter

my child

my heart

does not have the luxury of being able to verbalize how my illness affects her at three years old. Instead it shows through her actions. The tantrums and the reverting are ways of showing me how the uncertainty (and sometimes chaos) of my illness affects her understanding and her security. When her sense of normal is shifted (such as one parent being hospitalized for almost three weeks in a six week period), her whole self is affected. The last day she was with my parents she told my mom that she was sad and when my mom asked why she said it was because she knew that her mommy was never going to get any better because her belly was too sick.

This hit me hard.

I’m not sure how many tears I’ve cried thinking about it.

I struggled with guilt and shame knowing how unfair it is for her to have to worry about whether or not her mommy is going to be able to pick her up or get in the floor to play in the floor with her. She depends on me and I hate that sometimes my illness makes me feel undependable since you cannot always predict a flare. I spent so much time beating myself up. I cried out to God why this had to happen. It hurt. A lot.

Parenting with chronic illness is hard y’all.

On everyone.

Its hard on the parent with the illness. Its hard on the parent who ends up being the caregiver to both the sick spouse and the child. And its hard on the child. It is definitely a difficult triangle to maneuver.

The one thing that this whole experience has taught me was how valuable each moment can be. And how important how important it is to soak up each and every minute of a good day and how to make alterations to make even the bad days memorable.

Now what does this have to do with potty training?

I am proud to report as we settled back into a slightly new normal (which included me getting my strength back) and got back into the rhythm of our family, potty training is back on track and the “Pee-pee In The Potty” dance Abby and I created has become a regular occurrence.

Even 3 year olds need to have a new kind of normal.

 

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Where I Am

After my most recent hospital discharge, I needed some time to process. I shut off Facebook. I shut off Twitter. I shut off here. I pretty must shut off everything (unfortunately my family got included in that as well – not proud of it, just aiming for transparency). I was so overwhelmed with emotions that I had to get away even if it was just in my own mind.

I was angry.

I was hurt.

I was grieving.

I was lost.

To summarize the final meeting with my surgeon and a follow-up visit to my gastroenterologist, I am at a high likelihood of having another obstruction and there is nothing that can be done to prevent it. I could eat the cleanest diet possible, run 10 miles a day, and check off every item on the “perfect health” checklist and it would not change my risk for another obstruction. My total obstruction was caused by scar tissue from my most recent surgery for endometriosis which took place in August. In nine months time, I went from no scar tissue to a total bowel obstruction caused by scar tissue wrapping and cutting off the blood supply to my small bowel.

Some bodies have the tendency to create scar tissue. Others do not. I fall in the first category. Another factor is that the more abdominal surgeries you have, the more likely you are to create more scar tissue and the higher the risk for complications, like an obstruction.

I have now had 6 abdominal surgeries in 8 years (at the ripe old age of 30). My GI is concerned as this last operation was so major and with an incision so big that it just complicates things even further. He was so incredibly supportive and even felt like a father-figure as he said how much he wished there was something he could do to protect me from it happening again and as much as it helped, there was still a tension that hung in the air.

The unknown.

I feel like a ticking time bomb. Every stab or pain I worry that another obstruction is forming. I’m terrified to eat. I haven’t had a good nights sleep in weeks.

Do not worry, I am in the works to get all of the above taken care of with my team of doctors.

I am also working on getting myself back “out there.” I’m really energized to get back into blogging regularly and getting reconnected in the community. I’m enjoying being able to play with Abby more and take her to school (especially since last week she started telling everyone that Mommy no longer lived at home but at the hospital). My husband and I are having a date night at a hotel in the Queen City before he takes off to Nicaragua for a week.

Physically, I’m still struggling but I’m at a place where I feel good. In my heart. In my mind. In my soul. And its a good place to be.

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Small Step Back & A Renewed Outlook

I’m at home today on surgeon’s office orders. Yesterday I had a sudden resurgence of pain that was very similar to the pain that alerted me to my bowel obstruction. It wasn’t as constant as the day I went to the ER but when the pain hit it took your breath away.

I came home to rest hoping the pain would subside but when vomiting joined the party, I became very worried. I called my surgeon’s office first thing this morning and his assistant has me coming in first thing tomorrow (he was out of the office today) and my visit may likely include labs and/or a CAT scan. If things get worse, I am ordered to go to the ER but as of now, I’m ordered to rest and go on a liquids only diet.

It is so hard not to panic and jump to the worse case scenario. I’m trying to stay pulled together.

Thankfully yesterday afternoon I came across a post written by my wonderful friend C.C. which introduced me to Sara’s Story. Talk about a change in perspective. The video is about 30 minutes but it is worth every single minute. Turn off twitter. Turn off TV. Close my blog page even. Your life will be changed.

As I wiped the million tears, my first thought went to my blog tagline, “Choose hope in spite of chronic illness.” The past couple weeks I’ve had a hard time making that choice. I’ve tried to put on a good front but in my heart I know I have not been there. After listening to Sara’s story, I was totally convicted and have felt a new rededication to working each and every day to choose hope.

I have so many amazing things to be thankful for and I truly am blessed to have such an amazing family, friends, and community. Yes, chronic illness sucks. Plain and simple. However, I have so many other positive things that I can focus on.

Can I be thankful for a possible hiccup in my recovery if it renews my faith and hope? Absolutely.