Our little Mango has officially turned 2! Two years of so much struggles for a little boy not even big enough for his age. He really is a little trooper. While we all sang happy birthday to Mango, I couldn't help but look around at everyone and realise what a good feeling it was to see how much Mango was loved. To see that he is who he is and no matter what that was, everyone loved him. Everyone loved him for no other reason than him. His smile contagious and his laugh just so adorable. You can't help but suddenly feel the need to laugh. 

A two year old boy who has changed so many lives in our path in life but most of all he has changed the people around him into better people. How much we have grown together and see the world in such a different view. I used to pray for a child who would change hearts, except I never realised till now that My prayers were given to me. For so long I have seen myself as taking this path on my own, by myself with noone but me. Now I realise I have been pushing the people that care most away. To try and protect Mango from nothing but my fear of people falling out of love with him. How could they though? Just by looking at him- your heart swells with love for him. Im being bias, I know. 

In saying all that, I want to take this time to thank all my family and friends for everything they have done. I want to thank you for being there for us when we needed you. Thank you for being there when we didn't ask you to be there but you still came to show your support. Thank you for listening and sharing our worries with us. Thank you for worrying when we worry, for being happy when we are happy, for crying when we cry and most of all - loving our boys just the way they are and for nothing more or less. 

We always miss the opportunity to stop and tell you how much it means to us that you are a part of our lives and riding along this journey with us. To see the love and support you give us. We love you for that.




 

He is Perfect

Perfect. 


Or

Perfection.


What does it mean? What is perfect? What is it that you see before the word perfection leaves your mouth? What makes you believe that something is perfect? 

I don't even know how to begin to start to explain this lump in my throat. This throb in my heart that makes me feel as if I'm about to explode into a million and one pieces. I want to curl up with my children and protect them from everyone that could hurt them. 
Right now. This very moment, I would trade anything for this feeling to go. 

How do we as parents of such fragile children protect them from people. Protect them from the world that threatens to take more away everyday. How do we protect our children who have special-need siblings that they have not come into a life of hardship, but into a life full of life and appreciation without exposing them to ignorant people that crush their views and make them question otherwise. 

Since Mango got his NG tube, I've had more and more people come to me and ask what is wrong with him. Which doesn't bother me as much if they look like they really care. Some people just stop and stare until we are out of view. Some have the nerve to to blame me, as if I made him that way. Some openly quote that he isn't perfect. All this I can usually take in with a smile and kindly explain to them that Mango has chromosome abnormality and that this is just one of our little obstacles that we need to face but he is otherwise as healthy as he can be. 

Except today. Today. I can't seem to stand and smile while you allow the ignorant words flow out of your mouth and cut deep into my heart, while I nod and smile. Today, I will not justify their words to protect my heart. Because today, my heart is giving in to all the hurt and pain. 


Dear person that stop me in my tracks to ask about my Mango. You didn't just stop to ask about Mango's NG. You didn't just ask about why he is the way he is. You didn't just tell me that my baby wasn't perfect. You didn't just ask me what I did to him to turn out this way. You even dared to say that you felt sorry for Plum, that he has a sibling with special needs. You did all of the above within two minutes of you standing in front of me. 

Mango is perfection. His NG tube, hearing aids, eye patch and all. He, as a whole, is entirely perfect. Everything you see in my kid that you define as not perfect is what makes me think he is so perfectly perfect. 

We are all perfect. Just the way we are.

If most of us can see this. Why can't you?

Bitter - sweet

We all have those times and moments in our lives that we call a bitter-sweet moment. Just lately it happens to be surrounding me constantly. My heart feels joy and pain at the same time causing myself to be confused about my emotions. 

Like the sweet moment when I held Plum in my arms for the first time and the bitter moment I realised that it would never be Mango and I ever again. Bitter-sweet.

The sweet feeling of finally being able to get results from a vision assessment we have been waiting so long for and then the bitter moment that we found out Mango was 'legally blind'.

The sweet moment I saw Mango closed his eyes after breathing in the gas that would put him to sleep knowing how long we had been waiting to find out what his hearing was like and then the bitter moment that our thoughts were confirmed that Mango had a hearing loss and would need hearing aids.

The wonderfully sweet moment when Plum first lifted his head on the second day of life and the bitter moment of realisation that it took Mango 5 months to lift his head for 5 seconds. 

The sweet moment when I look at Plum sleeping in his cot knowing that every second he is growing and learning something new but then I am crushed by a bitter feeling of knowing that one day Plum will out grow his big brother, while Mango struggles to put on a few inches and gain a few grams. 

I wake everyday to the morning sun shinning on my face and wonder what the day has in store for me and my family. How we will all cope and deal with the things that are brought to us. Everyday I tell myself that things will always be ok as long as our family stick together. Except today.
Today I feel hopeless and overwhelmed with guilt. Hopeless for Mango, who struggles and fights so much. Yet he is so naive to understand what is going on around him. Not realising that everything is a struggle and everything will always be 100 times harder for him, now, later and forever. He will never know the feeling of easiness to hold a spoon, point a finger or control his body.
The guilt that tries to pick at my heart strings everyday reminding me that Plum will never have a proper childhood just like his brother. Bringing him along to every therapy appointment and hospital stays. Being brought up knowing that his normal will always be with a brother that has a disability and will always require extra help. Just like his brother, his first friends may be his brothers therapist and doctors. Not because he needs it but because he hasn't had a choice to be able to choose friends because he hasn't been open to that type of environment. Where is the time? The guilt of not having enough time for the both of them to show love and affection like they deserve every minute of their lives. 

I feel as a mother/ full time carer, I want the best for my children. The best anyone in this world could ever have. I'm told all the time that I shouldn't be too hard on myself because what I give them is everything I have. Yes, this is true. But what I give is still less than what a 'normal' family can give. What I can give are only a few minutes or hours in between appointments and feeding and changing nappies is a small amount of play time and love. Reminding them constantly that I love them and that I am giving my all. My all may not be enough but it's everything I have to give. I would give anything to see smiles on their faces. 

While they crave to want the best, I also crave to give them the best. 

New Family Member + Update

We finally have a new addition to the family. Another little boy. I will call him Plum for his dark skin and round cheeks, so round infact that they hang off his face a little bit. 

It has been ten weeks since Plum arrived and boy has alot happened. So here is everything in a nutshell...

Plum was born on a wonderful Thursday of February. We spent two days in hospital, leaving on the Saturday. On the Monday after we went into hospital for Mango's barium swallow assessment. This is an assessment, where Mango is being seated in a chair that is surrounded by a huge x-ray machine. I bring a whole bag of different foods that he usually eats and we feed him the food while this x-ray machine moves around his chest area (back and front) to see if any of the food we feed him goes down into his lungs. Which in shorter words is called aspiration. The results came back positive. He was aspirating on thin fluids and food. I would also like to just add that I actually saw with my own two eyes the food go down his chest. It was like a big blob that got stuck at the top of his chest and then dropped to the bottom of his chest. It was so surreal. One doctor and two speechies were present at the time of the assessment and they couldn't believe how much food was going down his small throat. We went home that day with strict instructions to only give him thicker foods and and no fluids. The following Friday we spent the day at the hospital (again) to put a nasal gastric tube into him so we could keep well hydrated since he cant have any fluids.

The next few weeks were full of appointments with the paediatrician, early intervention, our yearly vision assessment which our results were given straight away. It stated that something Mango could see within three meters and 'normal' adult could see within sixty meters. Pretty much telling us in the nicest way possible that he was blind. Well legally anyway. Yes, Legally blind. We also had an endocrinology appointment for growth hormones which we were currently rejected because he didn't meet the criteria. Absolutely ridiculous because when we checked the criteria, he passed all of them. 

This last week we also had BAER test (hearing test) for Mango. He had to go under anaesthetic. Those results also came back that he had a mild to moderate hearing loss. Mango will need hearing aids. 

As you can see, my baby has been through alot the past few weeks and it is only to get busier during the May period. All while this is going on, our dearest Plum has been as well behaved as I could have asked. He cries when he is hungry and sleepy but happy to just sit around and watch everything that is going on around him. 

Please if anyone has a story to tell about growth hormones that could help or give me some information with what is to come, please do say something. 

I need to go back and attend to my twins! 

Mamma of Mango 1 and 1/2 years old (size of 6 month old) and Plum 2 and 1/2 months (size of 2 and 1/2 month old) =)

cutepaws.com

EXHAUSTED

Balanced and UNbalanced translocations in chromsomes

Balanced translocations in our chromosomes apparently are actually quite common. Not everybody has them but then again, alot of people do have them and they just don't know about it because it hasn't affected them.

A balance translocation is when 2 pairs of chromosomes are involved. When we look at the two chromosomes in a balanced translocation we see that all parts of the chromosomes are there. No part of it is missing neither added. Two things can happen in a balanced translocation. Such as:

What usually happens is that a piece of one chromosome is swapped with the other chromosome.

Or one part of the chromosome is attached to another part of the chromosome.

Either way, a person with a balanced translocation usually is never affected. What affects an individual with a chromosome disorder is that there is an imbalance. It's never any good to have too much of something or to little of something. It's like a scale. The scale always has to be even.

image: genetics home reference

NOTE: The information on this blog is just something I have learnt in my time as a mother of a child with a genetic disorder. I am not a qualified doctor or therapist, etc and do not claim that I have the knowledge to be. The information is merely for my family members, close friends and other parents with similar issues looking for other families and their experiences.

Moment of realisation

As the year 2014 sets in and my growing 34 week pregnancy belly continues to grow, the reality of how another beautiful soul will soon join our family and turn our world upside down (for the better ofcourse). Something like we never expected before. Because as much as I would like to admit that I am always prepared for everything, it somehow always turns out that Im not.

I realised this morning when I was feeding Mango a bottle of milk. His eyes were closed, half asleep but just awake enough to drink down some milk, that this. This moment. This quiet peaceful one-on-one moment that we had every morning for the past 19 months will soon be gone. It wouldn't be Mama Bear and Mango anymore. There would be three of us or four if you want to include Papa Bear (except I'm sure he wont mind because he would rather me do the morning feeds). My sweet little baby, who kinda actually still is a baby. It was a bitter-sweet moment. I need to cherish every moment that I have with him in the last few weeks. Am I wrong by doing this? Will I spoil him rotten and when his little brother comes along he will feel that i am giving him less time? I want to cry in agony and smile at the same time. I don't know how to react.

I hope one day that my Mango will have the ability to understand the love I have for him. I hope one day he will grow into a man of his own and know that everyday that passes/passed till my very last breath I loved him more than the moment before...

Mango's

Today my darling baby Mango ate a mango. Yes, like a round very sweet yellow mango. A milestone that hit me so hard I didn't even see it coming. I put a nice decent square piece of it in his mouth and he chewed it till it was all mush and then swallowed. He swallowed that piece of mango without choking and dying on me.

So today, I am an extremely proud Mama Bear and I use the word extremely because I am proud of him everyday but today I just happen to be extra proud. We pretty much thought that he would be on purees all his life and the rest of my days on this earth. Puree morning, afternoon and night. BUT today showed us that it won't always probably be like that. Today, I hope, is the day that we can start thicker foods that include more mouth movements.

Today is a good day. A milestone that not many parents take for granted because it is just what is expected and unfortunately have not seen the beauty in having the ability to have mouth control.

Outside there is a bright yellow sun, shining down on our green luscious grass. A bright yellow sun just like my little asian Mango who sits in his supported chair eating square pieces of Mango from my hand.

=)