Simply Lambchops

A letter to K

all about K Thursday, May 01, 2014

To my precious K,

Mommy got a scare this morning. We were supposed to visit you first, then go to Ikea for breakfast with Jie Jie (sister) and Ge Ge (brother). Ah Ma (grandma) was here to see you too.

When we reached, we saw the curtains of your bed at the PICU drawn. I thought it was the usual routined stuff the medical team was doing. Daddy, Ah Ma and Mommy waited for them to be done so that we could say hi to you. After about 30 mins, we saw the consultants rushing into your room like there was an emergency crisis. From the monitor, I saw that your spO2 had dropped to 30plus. The doctors all looked anxious. At that moment, Ah Ma and Mommy broke down and cried. We knew in our hearts, that something has gone very wrong. Your heart rate and spO2 reading dropped fast. Is this it? I thought I was going to lose you at this moment. That thought was so scary and it almost choked me. I felt part of me separating from my whole, and my heart torn into pieces.

I prayed. I prayed so hard. I petitioned to God for you. That He will be merciful and help you overcome whatever is troubling your body. That He will heal you in His special way and comfort you when you are scared. I know you are looking for me for comfort like you always do when you are scared, but right now, the best thing I can do for you is to let you rest. I cannot talk to you, not can I touch you and stroke your beautiful face, for you will sense my presence, and starts to get agitated. Your heart rate and blood pressure will shoot up,
and your oxygen reading will drop. I want you to know that keeping myself away from you is also very painful for me and I struggle in my heart to do so. I miss your smiles, your cheeky looks, your funny antics, your hugs and kisses.

My petition to God repeated few times in my mind and I couldn't talk. While waiting for the doctors to update us on what happened, I just sat outside the PICU with Ah Ma. I wondered what she was thinking about, and that she could be as scared as me, if not, worse. We continued weeping quietly in our hearts. Daddy wept too. He must feel a lot of anguish. You are Daddy's girl too.

Taken from Daddy's FB timeline

We realized afterward, that your heart stopped for a while. The medical team had to resuscitate you with CPR for close to 5 minutes. Dr PL also said that your condition is unstable as some parts of your lungs have collapsed. The fluid in your pleural cavity is also still there. If there is a need to, chest tubes may be put in. Mommy's praying that this won't happen as there are risks of injury to the organs nearby and other infections, but if this is one way to support your lungs while you rest, I will accept it.

There are plans to put you back on the Extracorporeal Membrane Oxygenation (ECMO) machine as a last resort. It was just 2 months ago when ECMO had to happen in order to save your life. Dear K, please respond to the new drug that is administered. Please cooperate and not fight the ventilator. Mommy knows that with this tube in your mouth, together with many other needles poking into you, must make you very uncomfortable. And the constant noise from the ventilator can be very scary and annoying, but treat it as a lullaby lulling you to sleep in the background? I know you want to sit up, and strut around but you can't as you are paralysed by drugs. Please be patient and rest as much as possible, so that your lungs can heal. You can walk for as long as you want when you are discharged. You can play and sing Let It Go as much as you wish to, but first, let your lungs heal. The path to ECMO is a really excruciating process for all of us. Not just for Daddy and Mommy, but all our friends and relatives, as well as our loving brethren. We all got very, very worried the last time it happened as there are so many risks involved. It was painful to see you with ECMO and the constant worry that anything would possibly happen was too much to bear each day when Mommy visited. I do not wish to sign the form to give approval for this treatment to be done on you ever again. Your battle scar from the ECMO is an evidence of your last victory in February, but it does not necessarily mean you will have the same victory if it has to be performed next time. Please God, please hear my prayers.

On a lighter note, I am so thankful to see your ever so strong fighting spirit. Even with high levels of sedative drugs, you are still fighting everything. This comforts me that you are still my dear feisty K. I'm also thankful that the medical team responded immediately when you had the scare this morning. The morning scare was an unfortunate incident but they handled well. They resuscitated you, didn't they? Daddy and I feel assured whenever we see familiar faces in the PICU. So many nurses and doctors love you. They love you so much that they know what will upset you and what will make you comfortable even when you are sedated. I am confident that they will do their best to help you through this third time you are under their charge.

I will wait patiently for you to recover and to be awake. I will wait to see your smile when you say 'bye' to the hospital staff in your sweetest voice, added with that slight tilt of your head, on the day of your discharge.

The song Let It Go is now playing. I remember how funny you look when the song reaches the chorus. You will go 'bah bah bah' together with the chorus and do that hand action at the part 'the cold never bothered me anyway'. I'm amazed by how much you actually remember of that song. Dear K, I will wait for you to be awake to sing it once again. The process of waiting for that day may be very painful to bear, but I will trust our Father in Heaven, that He will give you what is best for you. After all, you are also His precious K.

Lots of love,

Mommy

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Excuse me, is she a Down's baby?

all about K Friday, April 11, 2014

People have asked me the question, or have given me THE look that hints that the person is thinking of that question but is just too polite to ask.

Yea, K is a Down's baby.

World Down Syndrome Day 2014 Reflections by Simply Lambchops

To be more accurate, I would prefer that you refer to K as a child with Down Syndrome (DS) . She does not belong to John Langdon Down, the medical doctor who described this syndrome in 1866, so it's actually more polite to refer to a child who has DS as 'a child with DS'. Sometimes I hear medical doctors, nurses or therapists who still use the term 'Down's baby' to refer to K, and I cringe in my heart. It feels as if they don't acknowledge the fact that K is my child, and that she has part of my genetic make-up, and bears some of my features too. By referring to her or anyone with DS as a 'Down's baby', it gives the impression that the society looks upon them as a group of people who are 'diseased with a scary condition' or 'mental retards' (oh, how I hate that term!).

On the contrary,

people with DS are far from that.

Down Syndrome is medically known as Trisomy 21 as each somatic cell has 3
copies of chromosome 21. This is a genetic condition, and there is no cure for this. With just one extra copy of chromosome 21, it also brings about many medical problems like congenital heart problems, higher risks of lung infections, reflux, Hirschsprung disease, Celiac disease, thyroid problems, leukemia etc. Not forgetting the intellectual disability. The problematic list just goes on.

However, life is not as bleak as what you probably imagine right now. [Updated on 27 Oct 2015: I am glad Straits Times picked up this topic after news of a baby with DS with congenital heart conditions was abandoned by his parents and helped to raise awareness with this article.]

Just today when I was walking towards the nearby shopping mall to get some groceries, I thought of K and how much she has developed after being on the ECMO (~~will update about this soon~~ updated). If you are still keen to read on, I sincerely hope that what I share will encourage you as much as it has encouraged me as a mom of a child with DS.

When K was a newborn, I tried to make her look as 'normal' as possible. I would only select pictures which show her radiant and infectious smile, and often deleted those that did not look flattering. Pictures with her mouth open or tongue drooping due to low muscle tone, were quickly deleted or just saved in my iPhoto for personal keepsake. And when I brought her out, I was concerned that people would look at K and immediately recognise that she has DS from her facial features. Each eye I caught looking at her just made me more self-conscious.

However, I've learnt that in order for K to be socially accepted and included, I must first accept her in my life, and not to exclude her subconsciously. Since then, I have been more open and accepting of what she cannot achieve. I know that I just have to give her more time, and eventually she will be able to achieve that milestone. I have also shared more openly about her story to my students and people who are curious enough to ask.

K surprises me with her small achievements every day. There is never a day where I'm not learning something new about her. For example, just a couple of days back, I tried out a simple board game called Go Away, Monster! with her. It was one of the first games that Ch and L played, and I thought that at 2.5 years old, this is a good age to start K on some board games to teach her about turns-taking and to follow simple game instructions. Moreover, she has always expressed interest whenever we play any card or board game, by coming near the game set and "messing up the set-up". This is probably her way of playing, but of course, the older siblings do not appreciate this type of play from her. Anyway, after I explained what she had to do when it was her turn, we started playing and demonstrating the game play to her.

Do you believe that she waited patiently for her turn to reach into the bag to pick out a puzzle piece? Though she still doesn't quite figure which puzzle piece fits the game board, she tries to match the puzzle when we point out the correct shape for her. She also understands that when one of us pulls out the monster piece, we shout "Go away, Monster!". She babbles loudly and shoos the monster away with her hand. Isn't that cute?!

K has also always appreciated music, and would request for her favourites by showing us the hand actions of the song she wants. She loves The Wheels on the Bus, Twinkle Twinkle Little Star, Row, row, row your boat, and Itsy, Bitsy Spider the most and never gets tired listening to the songs over and over again. Recently, she tries to follow the hand and body movements of songs from Hi-5 or other music-packed children's shows as well. She even imitated me when I was practising for a bucket drumming performance.

Another example of how she has progressed in her cognitive development. Just two months back, she could not get the matching activity right, no matter how many times I tried to work it through with her. However, a week ago, somehow she figured it out and started matching the pictures! Though she doesn't get all the pictures matched correctly, her progress excites me and reaffirms my belief that she is able to achieve the milestone as long as I am patient with her.

K loves taking pictures and would volunteer a "cheeky face" when you flash a camera or camera phone in front of her. Her god-ma even caught her attempting to take a selfie!

Picture taken by K's godma

And for a child whose intellectual ability is supposed to be low, she amazes me with her ability to point out different parts of her body. Currently, she is able to point out her hair, ear, eye, nose, mouth, tongue, neck, shoulders, armpit, fingers, tummy, belly button, toes, and buttocks quite accurately. She also knows where to position the ear thermometer, the digital thermometer (under her armpit) and even knows how to wear the stethoscope.

There are many more positives about K. She is so loving, and is emotionally competent enough to tell when I am sad. She showers us with her hugs and kisses too.

I have read many successful stories of people with Down Syndrome who lead a very independent life in their adulthood, and are able to support themselves by working. Gone are the days where a person with Down Syndrome is just hidden away at home, away from the society. Today, parents are more aware of their potential, and with more community support, parents are also more informed about early intervention programs. Hence, the improvements shown in people with Down Syndrome are also far more significant than before.

I look forward to the day when I hear her speak in proper sentences, is able to feed herself solid food like rice, vegetables and meat (not just porridge or pureed foods) and is able to run around like a normal child.

I just need to give her and myself

a longer time to explore,

to fail,

and to succeed.

****

[updated on 29 October 2015]
Dear Friend, if you have reached this post because:

you were searching for more info on parenting a child with Down Syndrome,

you are looking for a support group to be connected with parents of children with Down Syndrome in Singapore,

you need some hope and confidence that you are not alone in this parenting journey of a special needs child,

these are a few of the support groups (that I know of) that you can join in Singapore:

1. Down Syndrome Association of Singapore - DSA aims to provide support to families and caregivers, help a person with Down Syndrome to lead a normal life and contribute to the society, and help integrate a person with Down Syndrome into mainstream society. You can also visit their Facebook page.

2. Singapore for Down Syndrome, a closed group on Facebook - This is a FB closed group for parents of children with Down Syndrome in Singapore. Please email Grace at squirrelwee@gmail.com if you wish to join the group.

3. a close-knitted Whatsapp group chat for Mommies of children with Down Syndrome - Entry to this group is by invitation and recommendation. You can email me at simplylambchops@gmail.com to find out more.

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