Italy and Holland

I came across this story/description on the CHERUBS USA website and thought it was very poignant, not just for our family, but for every family who has a child who is "different" through a disability, a health condition, a learning difficulty etc. I especially love the last paragraph, which I have bolded.

For another touching poem, refer to the poem entitled God's Loan, found here on our blog.

WELCOME TO HOLLAND

Poem by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a wonderful vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in a says, "Welcome to Holland."

"Holland?!?" you say, "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy! All my life I've dreamed of going to Italy."


But there's been a change in flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and catch your breath, you look around and you begin to notice that Holland has windmills; Holland has tulips; Holland has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that’s where I was supposed to go. That's what I had planned."

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.  

Baby & Family Update

Last week we had another visit the our specialist at KEMH. We are happy to report that the baby is growing well and still looks to be a bigger baby!! Also, the heart appears to be coping well, albeit it is a bit squished up. We were also told by the specialist that aside from the CDH our baby is pretty unremarkable and normal, for which we are very thankful :) It means that other abnormalities that can be picked up on an ultrasound have not been detected...yet.

During the ultrasound, our specialist commented that our baby is a bit camera shy as they refused to take their hands away from their face. I apologise for the photo below as it is very poor quality due to my scanner. However, it is possible to see the hands on the left hand side of the image, one near the forehead and the other near the nose. You can also see one eye socket in the centre of the image. Don't worry if you can't see it, as I often struggle to "read" scan images too :P (i used to feel like i was looking at magic eye pictures, where you needed to squint, tilt your head etc)



23 weeks

Its fantastic that, so far, at each visit we have gotten to see the baby in 2D, 3D and 4D. We continue to marvel at modern technology, especially in light of the fact that CDH has only been able to spotted on ultrasounds from around 3 years ago.

At our next visit later this month we have our usual consult with the specialist and midwives, usual antenatal check-up and we will also have the opportunity to go and speak with the pediatrician as well as tour the NICU at KEMH. For now, that is the latest update on the baby.

As for the rest of the family, Lucas is well and truly finding his feet (literally sometimes as he is OBSESSED with pulling his socks off). He walks everywhere and even starting to run. He loves to play outside and he thoroughly enjoyed the attention of his grandma and two aunties while they were here last week.

Chris has begun playing soccer again. It was his first week last Saturday and unfortunately his team lost, but only by 1 goal. Otherwise he is busy at work and doing things around the house. Soon we will need to begin tidying up the spare room/guest room/study and change it into a bedroom.

I am keeping busy with running after Lucas, kissing his owies he gets from falling over, being a mum, housework etc. Physically i am feeling fine. This pregnancy is no different from another "normal/healthy" pregnancy. I am well and truly past the morning sickness stage {thankfully}. I have been feeling the baby moving for quite a number of weeks now. I don't seem to have all my energy back, but that could be because i now spend my days keeping up with an active 1 year old :) And since i am over the half way mark, I am counting down the weeks til we get to meet this special little baby growing inside me :)

If you have any questions, please do not hesitate to contact us either by phone, email, facebook, this blog or in person. We are happy to answer all questions, if we are able to.

Easter 2011

WOW...where has the 5 day Easter 2011 long weekend gone!?!?! I cant believe its already Wednesday which means that Chris is back to work and Lucas and I are back in our 'normal' routine. But, on the flip side, its only 3 days til the weekend again :)

On Good Friday, I headed off to church in the morning, while Chris stayed home with Lucas. My mum also travelled up to spend the weekend and following week with us. After returning home, we all packed into the car with our supplies and headed down to Mandurah. We decided to park the car and walk down the foreshore to the visitors centre. However, we didn't count on it being closed!! So we had to make our own way and find things to do. We ended up walking around the small marks at Dolphin Quay, going for a coffee and ending off with play time on the grass and Cicerella's dinner. It was a beautiful day weather wise and we had a great time relaxing, taking photos, talking and laughing.

We also had a lovely, older lady stop to talk with us and let Lucas play and pet her dog. Lucas loved it and was full of giggles!

Easter Saturday - after Lucas's morning sleep we headed off to the Swan Valley. Here we visited Yahava Koffeeworks, the Chocolate Factory, a few wineries, Oggies Ice Creamery and Whiteman Park. Unfortunately we didn't get to stop at Whiteman Park as Lucas had just fallen sleep, and we didn't want to wake up and have a grumpy boy to deal with!!

At the Chocolate factory Lucas got to have his first taste of chocolate!! It was probably more exciting for us then it was for him...you may remember that Lucas has an allergy to cows milk. But the dark chocolate at the factory contains no milk so he could eat it!!

And he also got to try another "first", this time at the ice creamery. He had a who bowl (scoop) of melon sorbet which he absolutely loved :) He even tried feeding himself.

Easter Sunday we spent the day in Church and at home, before ending the evening off with a games night at my in-laws house. Easter Monday was also ANZAC Day, where we could remember the past wars and efforts of the men (and boys) sent to fight in them. Chris woke up early and headed to the dawn service. We then pottered around at home, fixing and cleaning things and watching the ANZAC Day football match.

The final public holiday, Tuesday, we headed off to breakfast at the Dome and then to look at some shops. Disappointingly, most we wanted to go into were closed. So we ended up at our local S/C where Lucas was treated to some clothes, bought by Grandma and us, and we treated ourselves to coffee and chocolate.

And that was our weekend!! All over much too quickly, but still enjoyed by all :) and to think there is less than 6 weeks til the next public holiday...but there is much to get through first!!

We hope all our readers had a lovely Easter weekend too :)

Wobbe Wobble

Last week Lucas began to walk properly on his own...he is now walking EVERYWHERE and I finally remembered to charge up the video camera and take a video of him.

Our Story in a Song

Sometime back in January, when we uncertain if the pregnancy was viable (we found out too early to see a heartbeat and had to wait a few weeks), I heard a song while driving that really touched me. Then today, I was looking through my favourites when I found the song again. Listening to it, all I can say is that this describes our story so well, and we are praying for a similar ending.

p.s We elected not to find out the sex of our baby

Three little letters

Dear blogger friends,


In the last blog post I explained about the new blog title, but I also left you hanging, saying that I would later explain how our lives were taking a hilly turn... Firstly, i would like to begin this post with the ending of a new favourite author of mine...she ends a letter to her readers in much the same way in every book, and it seems appropriate for the highway/rollercoaster journey we are taking. So “…strap yourself in tight, and don’t forget to b r e a t h e…”


Well, to accurately describe our journey it all began just over two weeks ago...Monday the 28th of March, 2011... At 830am we were in the waiting room of our local SKG Radiology office, excited about our 18 week pregnancy scan and getting to see our second child.


The scan began much the same as the scan we had when pregnant with Lucas, with the exception that the sonographer wasn't as chatty as our previous one. Anyway, she took the usual measurements and we got to see the heartbeat, its two little feet and two little hands, a profile shot and many screens of the internal organs.


We first suspected that something wasn't quite right was when the sonographer kept returning to look at the same area, the upper chest cavity and heart. Our second clue was that the sonographer became very quiet!! And our third clue was that we were there for nearly 2 hours, for an appointment that usually takes no longer than an hour...


So after waiting all that time, the sonographer finally said we could go and handed us the CD of photos to take home. It was a few hours later that we had our fourth and final clue...Chris missed phone call from our doctor. The doctor left a message explaining that we needed to come in and see him at the end of the day. He also explained the reason why.


Our baby has been diagnosed with a birth defect called congenital diaphragmatic hernia, commonly referred to as CDH...(three little letters).

Now, unless you have been personally affected by CDH you have probably never heard of it. Although it is classified as a rare condition, it actually occurs in 1 in every 2500-5000 births (depending which website you take your stats from).

CDH affects the internal organs in the stomach cavity and the chest cavity. The diaphragm is a muscle that separates the chest cavity (heart & lungs) from the stomach cavity (stomach, liver, intestines etc). It also helps us breath. A hernia is a protrusion of  tissue or organ in a weak muscle. Therefore, CDH is when the diaphragm has a hernia (in our case its on the left hand side) that allows the stomach organs to move up into the chest cavity, thus restricting the growth of the lung, pushing the heart across, and can affect the other lung also.

In our case, we have been referred to a specialist at King Edward Memorial Hospital (KEMH) which provides the best antenatal, specialist care in Western Australia. We have met a few members of our "team" that consists of doctors, midwives, residents, surgeon, paediatrician etc. It is also at KEMH that we will continue to receive on-going antenatal care and where we will deliver our baby.

So, we have shared the negative news that we received, however, there are some positives as well. We have been told that at this stage (20 weeks) our baby is looking healthy, other than the presence of CDH. We are also one of 8 or 9 families who are expecting a child with CDH in WA, thus meaning we are on the same rollercoaster road, and will hopefully be able to meet with them at some stage. Also, our team of specialists is encouraging me to have a natural birth (yay), no c-section unless medically necessary (just like any other birth).

Our specialist was also very excited to learn that Lucas was a big baby (9pd 3oz) as a bigger baby generally has a better chance of survival and there is a fair chance this baby will be big also.

We have also found two website, one from the US and one from Aust that offer support for families who experience CDH. The Cherubs websites are fantastic sources of information and inspiration.

Now, our journey will take us down a difficult stretch of road, with new experiences and more times of uncertainty. I (Tamala) have decided to blog about those experiences as it will help us process and absorb the information and help us adjust to our "new" lives. You are welcome to come along this journey with us, and feel free to leave comments here, via email, via facebook, in person, or any other way possible. Also, please do not be offended if we were unable to tell you in person - there are many people to tell and only so many times that you repeat the diagnosis. Therefore, we thought our blog was the best modern method of informing all of you at the same time.

We will leave you with encouraging words from Psalm 139, that remind us that no child is an accident, that all children are a miracle made by God, and although they may not be perfect here on earth, they will become perfect on the new earth.

Psalm 139: 13-16 (NKJV) 

¹³ For You formed my inward parts;
         You covered me in my mother’s womb.
 ¹⁴ I will praise You, for I am fearfully and wonderfully made;^[b]
         Marvelous are Your works,
         And that my soul knows very well.
 ¹⁵ My frame was not hidden from You,
         When I was made in secret,
         And skillfully wrought in the lowest parts of the earth.
 ¹⁶ Your eyes saw my substance, being yet unformed.
         And in Your book they all were written,
         The days fashioned for me,
         When as yet there were none of them.

Profile - 18 weeks

Feet - 18 weeks

20 weeks pregnant



New Title

So...you may have notice that I changed the blog title ... "Life's Highways" ... I was going to change it so that it had something to do with roller coasters, but since I've never been on one, I thought a highway was something I am MUCH more familiar with.

The new name came to me when I reflected on the fact that we are travelling a lot this year, down the main highways of the South West and Great Southern and that life is a lot like those highways. Sometimes you get a great run, not much traffic and the trip goes quickly. Other times, there is a lot of traffic, and everyone has to slow down and take their time. Also, the highways have many corners, turns, hills and valleys. Therefore it seemed fitting that I change our blog name to something that is very relevant to our lives :)

Also, our lives are about to take one of those hilly turns...an unexpected one...but more details to follow in the next few days when I get time to type it all up...

And just so you have something to look at other than text...here's a recent photo of me with Lucas