My First Born: (7) Talking Before Walking – Our Journey

I realised today that it has been a while since my last post. There is no particular reason other than a break to experiene life I suppose (and what is a testimony without life experience?) Our boy’s progress is going really well. It has been three months since his first birthday and I am delighted to share about our journey together.

I’m not sure where to start, so I guess I’ll being with his birthday party. It was so much fun. I decided that I wanted to do a tiger themed party. I went all out and bought heaps of black and orange decorations and utensils. I also decided that it was too hard to find someone to make a specialised cake on time, so I decided to learn how to bake and decorate one myself after watching a free online Modern Buttercream course by Joshua John Russel on Craftsy.com, which eventually turned into a lovely hobbie for a while.

It was a lot of work to get everything ready for the party, but I really enjoyed myself. I know some people don’t see the need to make such a big effort, but I wanted to because it was his first birthday and I had both the time and energy. I also bought tiger clothes for us to wear and even stitched together a shirt for my husband to wear that matched our son’s shirt.

Because it was such a mess to organise a party at home, we decided to choose a park to celebrate it. On the day of the party though, it was forecast for heavy rain. – Not something we wanted to hear. But I was vibrant and joyful, excited to go ahead as planned for 11am in the park, so I prayed for it to clear up by the time we needed to set up. I felt at peace about it and that we didn’t need to worry because God’s hand was at work. It rained right up until 10:00am and then stopped over the park we had chosen to celebrate at. (You could literally see grey clouds all around the park.) The sky continued to clear up and our boy had a sunny, windy birthday.

I am so excited to share our son’s talking journey. Despite his diagnosis of Down Syndrome, he started talking reasonably young at 6-months-old, saying Mum. I felt so blessed. 🙂 He then learnt bub, and eventually started saying Dad, Dad, Dad – to my husband’s delight. A month ago, I was wondering what his next word was going to be? The next morning, I entered our boy’s room for his usual 6am wake up and said “hello”.

“Hello.” He replied. I couldn’t believe what I heard, though it was clear as day.

I decided to try again. “Hello?” He smiled and said hello once more. I was so excited!

I quickly took him to our bedroom and tried it again. He said hello two more times to his Daddy. It was beautiful. It is a family moment that I will treasure forever. And of course we are celebrating further words as he grows…

Here is a little list of his Talking Milestones:

6 months old – Mum, Mum, Mum

10 months old – Dad, Dad, Dad & Bub, Bub, Bub

12 months old – Woof, Woof

14 months old – Hello, Bye, Lizard

15 months old – Meeooow, Hi Daddy (to the phone) & Book, book (when he flicks through a book).

He is still yet to grow teeth and we still wait to see him walk on his own, but he can stand alone without holding onto anything and climbs up to a walker to take a stroll down the hallway by himself. I couldn’t be any happier. 🙂  He is such a blessing.

If you would like to read more about our progress or about my testimony since he was born, feel welcome to browse the rest of my blog:

My First Born: (4) Life gets busy

It has been almost 9 months since our boy was diagnosed with Down Syndrome (DS). Although his diagnosis – 3 days after birth was a shock – the test of time revealed that through the power of prayer, our boy is insignificantly affected by it. Praise God.

However, like most things, as time moves on and people find other things to make themselves busy with, we become nonchalant about the significance of something important – like receiving a miracle that a diagnosis of a chronic disease has barely affected our first born son.

We have had a variety of distractions fill up our time recently. Including applying for life insurance, refinancing, revaluating the house to consolidate our loans, discovering our dog was pregnant and delivering a litter of 10 puppies, meeting their needs (maintaining their enclosure/cleaning/washing/feeding/etc.), as well as returning to work parttime for myself.

It was at work (during a time of which I was redirected for a month to write Individual Education Programs (IEP’s) for students with learning difficulties at a private school) where I decided to share my private information about our boy’s diagnosis with the head of the Learning Support Team. It was wonderful to hear her reactions and encouragement about his progress. I had almost grown used to negative reactions, full of sympathy and sadness that I wasn’t expecting such a positive response.

She also decided to share anonymously about one student who had a similar diagnosis to our son, except this boy had an inversion occur in Chromosome number two. It broke my heart to hear the difficulties and severe lack of comprehension that this boy struggled with, but it recememted the understanding of the miracle of our son’s abilities into my heart. I had become nonchalant. I was even discouraged sometimes, because it was easy to forget the average age for meeting milestones and compare the pace of our son’s milestones with a few other babies of the same age that were racing ahead with theirs (walking at six months). Regardless, our son is doing well. It is a daily blessing to see our boy grow happy, healthy, clever and strong. And I really hope never to take it for granted.

It is wonderful to know that our son has been blessed with good health, despite his diagnosis. Encouraging others around us (family and friends) to share this understanding though, isn’t as easy as I would have liked. Some people have certainly been touched by our story and recognise the blessings of his heath, but we are also challenged at times with stereotyping, doubt and discouragement due to a lack of understanding, distrusting our word/research or judging us with a sense of denial.

Personally, I can confidently say that I have been raised very level headed. I was brought up in a Christian home, but doing life was always practical, with caution and responsibility. I was never really lead to believe that life will always work out somehow or that challenges are only temporary. It was important to understand that money didn’t grow on trees. You had to invest in your future by working hard, choosing a practical career, saving your money and accepting that bad things can happen, so it is your responsibility to be prepared for them. – Not to say that we really wanted to accept these life lessons for some time, but they were always there.

So even though I am a Christian – believing for a miracle and trusting that God has promised good health for my son – I know that I am not in denial. I have always aimed to invest in his development by attending a variety of regular health checks, researching a huge variety of information, as well as attending mother’s groups, play groups and information seminars (like the value of reading to your kids) to provide my son with the best care and opportunities that I can – probably more so then I would have if there was no diagnosis. I don’t expect that I won’t need to invest into his development. But in saying this, every health check is coming back with excellent results, praise God and the few consultations I have had with therapists (physio/OT/speech) have all said that he still has no need for any help because he is meeting all his milestones on time and with no difficulties. I will rejoice, Amen!

If you would like to read more about our progress or about my testimony since he was born, feel welcome to browse the rest of my blog:

My First Born: (1) Unexpected Circumstances

My First Born: (2) Praying One Step At A Time

My First Born: (3) Overcoming The Stigmatism of Down Syndrome

My First Born: (4) Becoming Nonchalant

My First Born: (5) Polite Stereotyping – Down Syndrome

My First Born: (6) Fun, Joy and Giggles – Overlooking Down Syndrome

Thank you.

My First Born: (5) Polite Stereotyping – Down Syndrome

It has honestly taken 10 months before I have personally come to understand why most parents/carers of a child with a disability like Down Syndrome (DS) say that they just want people to celebrate their child’s achievements and acknowledge the challenges they face, when they come to them.

I had heard a few times in different places that “it’s just stereotyping” when a parent/friend mentions someone acknowledging their child as a “typical child with DS.” – But I didn’t get it. Even after six months of holding my cards close to my heart and feeling quite betrayed when I’d learn that more people knew that our boy was diagnosed with DS then I wanted to tell, I still didn’t understand why a parent might go out of their way to tell people to accept their child as an individual.

That is until recently in the midst of a friendly conversation, one parent spoke up (similar to other parents that have spoken to us in the past) and asked, “he has Down Syndrome, hey?”
My husband and I exchanged a glance and in the moment, I imagined that he was feeling the same as me. My heart sank. It was a quick hit of frustration and disappointment. All I could think of was – why did it need to be mentioned? It’s not like they can tell just by looking at our boy.
The parent continued, “…and it’s cool. They are really loving people hey. There will be challenges, but they will always love you.”
I think, by that point – knowing that our boy is still meeting his milestones well – I was really disheartened. Don’t get me wrong though. I appreciate the positivity. But, I didn’t want to hear it. I’m believing for good health, safety and protection. I don’t want to be told that there will be challenges (like it should be expected) and I really don’t believe there will be any more challenges for our boy than any other person growing through life. We will all experience challenges in life.

I didn’t respond. I didn’t know how. However, I did feel comforted that my husband tried to explain that in contrary to what they just said, our boy was doing well and that his future may have no significant struggles despite his diagnosis of Translocation Trisomy 21 (Down Syndrome).

It took a few days before I could really decide how best to respond to a similar circumstance in the future. I don’t want to push my friends away due to misunderstanding, but in the same mind, I didn’t want to go unheard either. If they feel confident enough to bring it up, then I really need to be confident in telling them about how I feel. So I asked myself… What did it feel like? I was finally able to see it. Polite stereotyping can seem harmless – especially when you are ill informed about a person’s individuality – but never-the-less, it can be hurtful.

I decided in the future that if someone openly shares their opinion about my boy, without asking about him first, I will kindly reply, “I appreciate your opinion, however you are stereotyping. Our son is unique and meeting his milestones just like anyone.” I will then continue to explain further about his unique diagnosis and other specifics if they seem genuinely interested (like the fact that there are more than 50 different symptoms of DS, but not every person has all the same features). Otherwise, I will remain content in the fact that I have at least voiced that they are stereotyping, even if it may be through misunderstanding.

I know it is harmless, but it can be hard for a parent to keep hearing. I am also concerned one day, that someone will say something similar in front of our boy, and he will understand and be hurt by it. I truly hope it never happens, but that may just be one of the challenges that he we need to overcome in his life.

For now though, I will remain faithful in the promises of God. Our son is doing well. He is strong, healthy, clever and meeting his milestones with excellent progress. At 9-months-old he started pulling himself up to stand against furniture, waving hello, giving us high fives and crawling. At 10-months-old he started clapping his hands and side stepping against furniture. And now at 11-months-old his crawling is hard to keep up with, it is hard to keep everything out of his reach that he stands up to grab, and he has started taking his weight and standing without any support, after initially standing against something. Praise God.

Thank you for reading.

If you would like to read an alternative article written about bullying, stereotypes and Down Syndrome from a personal perspective, click here.

If you would like to read more about our progress or about my testimony since our boy was born, feel welcome to browse the rest of my blog:

My First Born: (1) Unexpected Circumstances

My First Born: (2) Praying One Step At A Time

My First Born: (3) Overcoming The Stigmatism of Down Syndrome

My First Born: (4) Becoming Nonchalant

My First Born: (5) Polite Stereotyping – Down Syndrome

My First Born: (6) Fun, Joy and Giggles – Overlooking Down Syndrome

Thank you.

My First Born: (3) Overcoming the Stigmatism of Down Syndrome

They looked and said “Down Syndrome.” I look and say “beautiful.”
Since the day our boy arrived, we faced an unknown future. None of us knew much about Down Syndrome (DS) but the stigmatism was there because of the many myths that have developed in society. It was an interesting journey researching about DS and what it meant for our son to be diagnosed with Robertsonian Translocation. Research certainly helped us understand the diagnosis and gave us a new perspective for others with DS.
For instance, did you know that not all people with Down Syndrome have an extra chromosome? In fact, approximately 1 in every 50,000 diagnosed with Down Syndrome (like our baby) instead have what is known as Translocation Trisomy 21. This means that a part of a chromosome breaks off and reattaches itself to another chromosome, which can cause similar symptoms to Down Syndrome.
Did you know that having a child with Down Syndrome does not mean that a person’s genetics is necessarily weak or affected (a common and offensive misconception I have read from the opinions of other people)? Although a translocation comes with additional fear for family involved because the parents need to be tested if  they are a ‘balanced carrier‘, tests like this can inform the parents (more often than not) that it was something that ‘just happened’ during conception? (Like my husband and I.)
Also, did you know that a person with Down Syndrome is far more like their family members than another person with Down Syndrome?
Did you know that their is a variety of symptoms that can affect someone with Down Syndrome but which ones and how many symptoms vary from person to person (and although they are usually delayed at meeting certain milestones as they grow, eventually they will meet them, none-the-less)?
Did you know that many individuals that have been diagnosed with Down Syndrome function well in society; living independently in their own accommodation, working, sometimes with a Trade, competing in sport, etc?
Did you know that families with a child diagnosed with Down Syndrome want people to acknowledge their child by their personality and what makes them who they are and not define them by their disability?
Did you know that because our family is Christian, I pray for protection, health and development of our baby boy daily? And did you know that despite his diagnosis, he is meeting his milestones very well and is very healthy? This is our testimony.
Did you know that we first did not want to tell anyone about his diagnosis because we did not want to take away their joy, celebrating the arrival of our first baby?
Did you know that we later did not want to tell everyone (besides close friends and family) because we did not want him to be judged by anyone as “the baby with Down Syndrome?”
I am so grateful to be blessed with our baby boy and hope that people get to know our son by what makes him who he is daily, celebrating his achievements and only acknowledging any challenges that he might face in life when they arrive.
Regardless of his diagnosis, it has been a wonderful journey so far watching our boy grow and do so well. At 6-months-old, we have experienced a lot of joy. We took him swimming for the first time and watched him light up once he realised he could splash and manipulate the water with his hands. We introduced new textures for him to touch and feel; like the blades of grass under his toes, the whiskers of his dads beard, or just recently putting up the christmas tree and letting him grab and feel the texture of the bristles under his little fingers. I also watched my husband sit our boy on his lap and let him hold his drum sticks as he played different beats. It was great to see, but what surprised me today was when my husband decided to give the sticks to our boy.  He had learnt and was lifting the sticks appropriately to play our electric drum kit. Using both hands he made a repetitive beat until he lost coordination. Then my partner would align the sticks on the snare again for him and he would play again. The snare was easy to hit and we decided to capture it on video. He then hit the symbol a few times with the left stick while hitting the snare with the right which sent us into a fit of laughter. We just couldn’t believe how well he can play.
Nothing seems to be holding him back. My husband also learnt that by holding his hands from a sitting position, he will pull himself up to a standing position now. To many mums, all these milestones would seem normal – if not a little late compared to their children, but considering we were advised by specialists to prepare ourselves for a severe disability when he was born, I am overwhelmed with joy and gratitude. Our boy is understanding, applying, analysing, judging and creating.
I once read the opinions of a frustrated parent that saw a sign on their neighbours lawn which said, “I’m so proud of our little girl who just graduated from grade 2.” In response, they mocked by saying that “it isn’t that important” and “no one else really cares.” Back then I only thought it was a bit weird that it would bother them (but wasn’t too concerned either way), however my eyes are now open to a whole new perspective of a love for life and I think it is fantastic that they celebrate there child’s milestones, no matter how small they are. – Not all children have the opportunity to meet simple milestones that are commonly taken for granted in everyday life. Perhaps God would appreciate more of us celebrating the complex ability to grow, learn and enjoy life.
It’s also apparent that our boy is close to learning how to crawl, which is exciting to both watch and encourage. Every little step achieved has brought me a sense of gratitude from rolling back and forth, to pushing up onto his arms, to wiggling a full rotation in his cot, to wiggling backwards off from his play mat, to straightening his legs and poking his bum in the air, to pushing himself up onto all fours and rocking back and forth, before finally lunging himself forward after a toy he wants. I’m not sure when he will start, but I’m thinking it will happen very soon. Praise God.
To finish off an amazing month of milestones, I was blessed just recently to hear our boy, the day before turning 7-months-old, call out “mum, mum” after putting him down on the floor to attend a short trip to the bathroom. I was so shocked that I just lay there with him and continued to encourage and laugh with him at his achievement. I also recorded it to celebrate with friends and family later. What an amazing milestone to achieve! I feel so blessed because parents/carers of children with Down Syndrome on average, wait until their child is 11-months-old.
I am just so proud and so grateful. Thank you God. I love my boy so much.
If you would like to read more about our progress or about my testimony since he was born, feel welcome to browse the rest of my blog:
Thank you.

My First Born: (1) Unexpected Circumstances

I never really thought I would have a story worth telling. Everyone has a different experience when having their first baby, but six months later and I really feel prompted to share my experience with the world. You see, I had plenty of unexpected circumstances during my pregnancy and delivery like most women. When I was pregnant, I was diagnosed with gestational diabetes, which certainly tested my patience and although I prayed regularly for my baby’s health, it also gave me an even stronger desire to pray for him (which I will share in another blog).

I was 37 weeks pregnant on the day of coming into labour. At about 5:15am, I woke to his usual kicking until I felt a very sharp thump. Within seconds my water was well and truly broken. I admit I was a bit frightened. It was unexpected at 3 weeks early and I hadn’t yet packed my bag to go to hospital. My contractions started an hour later but to my surprise, they did not get strong enough to stay at the hospital. I was in the first stage of labour with different levels of pain for three days (visiting the hospital each morning for a check up). My mother, husband and I even went shopping which had me laughing when we bumped into friends, wondering how I was doing? I decided not to tell anyone until I was induced at the hospital on the third day. I remembered that everyone was bombarding my sister-in-law with questions about her labour that took more than a day, so I really didn’t want that too.

The morning I went in to be induced at the hospital happened to land on Mother’s Day. It was all very exciting. I had Alicia Keys to listen to and was also determined to use nothing more than gas. At 5:00pm I was making great progress. 6 hours passed with support from both my mum and husband. The midwife then checked my dilation for the first time and was happy to say I was about 8 cm dilated, but hung around confused. She was concerned that it did not feel normal and had to ask the doctor to check. Unfortunately, the doctor explained that it was a face presentation. This meant that my boy was coming out face first which only happens 1 in 1000 labours. She continued to explain that because it is too difficult for a baby to be born this way, it also meant that I had to go in for an emergency cesarean. My heart absolutely sank. I worked so hard to eat well, avoid drugs (besides gas) and had no bad reactions to being induced, but I still needed a cesarean.

As I was taken off the drip and prepped for surgery I silently prayed for it to go well. I admit I was scared. I have friends that had to have a cesarean, but I was desperate not to have one myself. I guess it was meant to be a part of my testimony. I don’t know why certain things happen to some people and not others, but I do believe that if we do experience something we really don’t want to – we are given an opportunity to relate to others that have also experienced it.

I don’t know if my testimony will ever provide someone with comfort, challenge their thinking for better or help strengthen someone’s faith, but I do feel prompted to share it none-the-less. The surgery did go well and although recovery was the worst pain I’ve even gone through (yes, I’ve broken bones before) the scar even healed quickly. I was numb from the chest down and had a big tarp to hide the procedure, but it was a bit daunting feeling the pressure of the surgeons thrash my body left and right. My husband stood by my side and despite it all, it was still a wonderful moment to hear our boy cry and then lifted into view for us to see.

I was very nervous after the procedure, waiting to feel my body again. Slowly but surely though, I began to wiggle my toes and over a few hours all the feeling came back. Eventually over at the labour ward, I reunited with family and my boy. It was such a beautiful moment. And I was very thankful that it was all over. All the hard work was worth it. We had a healthy baby boy and because I was strict to control my gestational diabetes with a diet, his sugar levels was insignificantly affected. We took photos and shared the news of our beautiful boy’s early arrival on Mother’s Day with the rest of our friends and family. Before going to sleep I thanked God again for our beautiful boy.

The next morning was full of challenges. I had to get out of bed for the first time after the cesarean. The best I can describe was an incredible burning pain searing across my abdomen like the skin had been ripped from my torso. Unfortunately, my natural reaction was to tense my abdominal muscles which had me screaming and crying for 10 minutes until I could finally relax. Regardless of this however, I eventually worked out how to pull my way out of bed (trying only to use my back muscles) and made my first trip to the bathroom for a shower.

Back in bed, I was also visited by a doctor in charge of the ICU where the nurses were monitoring our boy’s sugar levels. It was still early, so my husband was not yet back to visit. The doctor explained that he would like to take some blood tests because some of the nurses have noticed a few symptoms that together – look like a baby who might have Down Syndrome (DS). I didn’t need long to process what he said. I said that it was ok to perform the test because obviously it would be important to know. He left looking more positive than when he entered, but my attitude quickly changed from confidence to panic. I grabbed my phone and messaged my brother. He was 7 years younger than me, but as a devoted Christian on fire for God, I knew that he would faithfully pray with a fierce attitude for my situation. I told him that I didn’t want to tell anyone else, but they wanted to do a blood test to check if he had DS, if he could pray against it and that I believed it had to be a lie from the devil. He agreed.

It was very hard to tell my husband when he arrived. He was bright and bubbly, smiling with joy. But I wasn’t. My joy was stolen away. I explained what happened and that the doctor said he would come back to explain more once my partner arrived. It took three days before we got the results back, which was actually considered very fast for results to return. It was the hardest three days I have ever experienced. We decided not to tell anyone else until we knew the results and stopped all communication with friends or family that didn’t visit. I don’t know how many times I prayed, but the first 2 nights I know I didn’t sleep. I was determined to pray against it. I searched through everything I knew in my heart that God was still here with me; and helping me and my husband through every hour. I was shaken. I cried so much that I got good at hiding it when someone was about to walk into the room (which happened a lot for food orders/delivery/pick up, pain killers, antibiotics, lactation help and examinations to check the progress of my scar healing). It frustrated me because I felt like I needed time to share my fears and frustrations with God and beg for his favour – crying as I prayed – but I was always interrupted.

I also wanted to sing because I always found that it brought me comfort and strengthened my faith, however, I didn’t want to bother the lady in the room next to me who would hear me through the doors of our shared bathroom. After 2 days though, my husband realised that next door was actually a couple that also attended our church, but we didn’t know very well. I then decided I would be a little selfish and that she wouldn’t mind, so every time I was in the bathroom I sang Hope of All Hearts. (A couple of months later, I was surprised to learn that next to us, she was struggling to cope with the pain of her cesarean after the delivery of her fourth baby and when she heard my singing she said that it really helped her through it. She said that when I sang, she would sit over by the door to listen.)

The last night before we were given the results, I was very tired. I knew I couldn’t stay up all night again so I became very desperate. My prayer changed to be as transparent as I possibly could. I prayed that if I knew what to do or to say to make the results come back negative, I would do so. I said that I knew I wasn’t perfect or deserved a miracle but I deeply wanted one. I realised that no one really deserved a miracle, but that he gave them to some people none-the-less. I then thought about how I believed that God has a purpose for all of us and wondered why he might allow my boy to have DS. I decided to pray and acknowledge that as our creator, he knitted us in our mother’s womb so he could rearrange my son’s genes if he needed to. I prayed that God would grant us a miracle, not because we deserved it but because he loved us and because my boy was one of his children too. I asked that if there was anything affecting our boy, that God would change his genes because he can and so that our son no longer had anything – or if God had a reason for our boy to have DS – that he would make/change his genes so that he would not be affected by it. I then prayed in tongues for a short while because I didn’t know what else to say, but wanted the comfort of knowing that I have said enough. I gradually felt comforted. I felt that God was there, that he cared and that he wanted me to know that I shouldn’t be afraid.

The next morning the doctor came to my room to tell me that the results were here, but was happy to wait for my partner to share them with us as we had requested earlier. Once my husband arrived two doctors and a social worker entered our room. Because three of them came to our room, I already knew what they were going to say and when they told us that the results came back positive for DS I was extremely surprised by my reaction. I was very level headed and ask what happened from here? Although I didn’t really want to hear it, I was calm and collected. I became frustrated by the end however, reluctant to hear them tell us to that although there will be challenges in the future, for now he is just our baby and that we should be able to love him as our baby.

Once they left my husband wandered slowly over to our boy and smiled. He picked him up with love and said that he didn’t care and he still loved our boy just the same. He then proceeded to ask me if I would like a hold and I declined. I wasn’t angry or bitter, but I just couldn’t face him right then. I had a variety of thoughts racing through my head and I wasn’t ready to accept my boy as someone different to who I only just fell in love with. But it was only short. Watching my husband with him and a nurse giving him his first bath soon changed my heart and I wanted to hold my boy. When I did, I was quickly reminded of his innocence. I already loved him so much and it continued to grow. I was conflicted however, wondering why God would rob our boy of a healthy and happy future? I knew God wasn’t like that and thought back to my prayers. Only Satan comes to steal, kill and destroy. I felt a sense of peace that my prayers were answered and decided to hold fast and believe that God was going to give my boy good health and protect him.

If you would like to know more about our progress, please feel free to read my other posts:

My First Born: (1) Unexpected Circumstances

My First Born: (2) Praying One Step At A Time

My First Born: (3) Overcoming The Stigmatism of Down Syndrome

My First Born: (4) Becoming Nonchalant

My First Born: (5) Polite Stereotyping – Down Syndrome

My First Born: (6) Fun, Joy and Giggles – Overlooking Down Syndrome

Thank you.