My Promo-Mentors Writing Challenge: A Memorable Day For My Son With CDH Whom Is Tube-Fed

iamjadeline (69)in #promomentors-challenge • 7 years ago (edited)

A day out for hours is normal for any child but not so for Jansen, who never went out for 2 years of his life except hospital appointments, thereafter perhaps 3-5 times out to grandparents' house. He has right-sided Congenital Diaphragmatic Hernia which affected the growth of his right lung, hence with just one left-side lung functioning solely for his body's oxygenation, doctors advised us to keep him at home at the beginning stage of his life so that he would have zero infection of whatever virus or bacteria. One respiratory infection will affect his one-left-functioning-lung, meaning he would have no lungs left to support his breathing, thus it can be fatal and life-threatening.

Now that he is 3 years old and 7 months, plus it is Chinese New Year festival season, coupled with the miracle that he does not need breathing machine anymore, we, his parents, figured that we wanted to try to bury our fear just for a day and gear up 100% faith to bring him out to a nearby mall for longer hours (he had been to mall 3-5 times in his life but for each visit we made it 10 to 15 minutes only, just to let him see other human besides his family, so that he knows the earth contains other inhabitants too!)

We chose Sunday to be the special day-out for him. Sunday is a funday! And it was church day.
Furthermore, it was 18th February 2018, our 3rd day of celebrating Chinese New Year. I was excited that day I woke up earlier to make sure everything was well-prepared. No doubt a little panic and good kind of stress. He was still being tube-fed so all the feeding apparatus must be ready in hand.

For feeding water.

For feeding milk cereal.

And because everywhere bound to be germs, I, being his main caregiver, who has also developed a phobia of him being infected, prepared all the products to help shoo-shoo away germs.

Since I have Jansen, my bag becomes heavier and friends wonder why. These are the reasons. Products mainly to protect Jansen from germs, viruses and bacteria.

Everything was set to go!

First thing first

After I fed him his breakfast blended meal, at 10 a.m., off we went to church first. We had fun and awesome time at church and Jansen had the chance to stay throughout the whole worship session, and stayed until the end of preaching. Yay! His first record!

He is just shy of the camera.

I did not take many photos at church because my focus was on the children and the word. The church ended around lunch time, and, as a family, we were thrilled to step into the mall together as our special day-out. I fed him his water feed in the car first at the car park so that I did not need to bring along the feeding apparatus.

Off to the mall

I decided to let him eat lunch together with family and close friends, ditching the idea that he would not be eating enough. Jansen just started his journey of eating at 3 years old and 5 months. While he had progressed alot since then, the volume he consumed was not enough to sustain his growth and development. However, just for this time, for the sake of creating a memorable experience for him and for us as a family, I said a loud "No!" to my mother-instinct-worry and we just enjoyed the lunch as if he was not a tube-fed child.

We had our lunch at BBQ Korean Chicken and all of us had awesome time together.

Say cheese. You can spot Jansen at the far end.

Using mobile fan while waiting for food.

Drinking his orange juice. For a child who never eats nor drinks from mouth, this sight makes me ecstatic.

While waiting for food, Jansen had his memorable and meaningful human-sight-seeing time. Sitting near the entrance, he was entertained by all the passers-by, and the escalators. He kept telling me, "Mummy, look, so many people there!" and "Mummy, more people again!" and the same conversation repeated few times.

Finally, food has arrived

We ordered 3 portions of food, hoping one of them would ignite Jansen's appetite to eat. He was still getting used to the varieties of taste and texture so it was not easy choosing what to order. These were the selection of the day.

Charbroiled Galbi Chicken - Grilled boneless chicken leg, marinated with classic, irresistable Korean bulgogi sauce. It comes with seaweed rice, fries and salad.

Perfectly grilled whole chicken leg coated generously with their special formulated jerk sauce, also comes with seaweed rice, fries and salad. No worries, we did not become a jerk after eating this. 😃

Bulgogi (beef) Jumokbap meal - freshly cooked rice ball with seaweed (the one in blackish sight), bulgogi beef and vegetables pouched in rice, served with baby potatoes, some stir-fried vegetables, and golden olive fried chicken. This is a superb meal and really worth the price.

Bulgogi (beef) Jumokbap Meal from the top angle.

We let Jansen tried all 3 dishes and he ended up only able to accept the fried chicken. Mummy thought perhaps he would love the grilled chicken and the rice but oh my was I dead wrong! Although he did not eat much, it was an enjoyable meal considering we never ever had a chance to eat together with him at home (he is a tubie), let alone eating together with him at the mall AND with a bunch of people. I could see from Jansen's face that it was indeed an experience for him, both an extraordinay adventure as well as an eventful exposure to the world outside of home.

Lastly, walking around

We brought him around the mall but ended up only at one shop called H&M. Jansen was attracted by the mannequins that he would not leave them. He even spoke to one of them, "Hey, mannequin, why wouldn't you talk. Talk to me, I am here." I taught him the word 'mannequin' before after he asked me what was that. After being there around the mannequin for half an hour, the security guard in the outlet was a bit alarmed and set his eyes on me and the children. I had decided to care less what he thought of us as long as my champion was happy. Well, he was like an alien from Mars visiting the earth, I did not mind letting him explore on the mannequins first. Even if the security guard came to ask me, I was ready to explain. After all, mannequins did not spread disease and mummy had sprayed disinfectant all over them before Jansen made his first contact with them. Remember the whole list of products I brought along in my bag? 😉 I used them before the security guard caught me doing it. One couple saw me did that and perhaps they thought I was crazy. Who cares as it was meant to be a memorable day. ✌

Look at him making friends with mannequin.

Oh yes, we managed to take a family photo too at another place other than home, something that I dreamt of, a memorable photo session I never thought would happen so soon. No kidding and no exaggerating, it was mind-blowing. We all stood proudly at the stage with all the Chinese New Year decoration and me, being the mother, arrogantly took photo with our champion in the midst of us. Arrogant in a good sense.

Jansen of course did not look natural as we guessed he was overwhelmed by the happening of the day. He tried his best to be as natural as he could. Spot @happycrazycon and @danielwong?

Just the four of us.

Another family photo at the mall.

It was almost 3p.m., meaning we had been out of home for good 6 hours. Oh my goodness, we could not believe this was real. It was actually happening. We had to go home due to the fact that children needed to nap. We left the mall with a fulfilled heart, tube-fed Jansen his milk cereal in the car, arrived home with a deep sense of satisfaction. Somehow we, as a family, felt we had achieved something, sort of like we had reached a milestone together. It was not only a memorable experience for us but an unforgettable one. So much so before naptime, Jansen told us this, "Let's go see many people and mannequins again."

The rest was history. Since that day, mummy and Jansen had had their 'decent' conversation daily about going out to the mall. Sometimes, they discussed. At times, they debated. Many times, mummy gave in and compromised. Sometimes, Jansen negotiated, "Just out for awhile only". Few times, mummy said "No" and then followed by a crying Jansen because he missed going out and his friends - mannequins.