The things we do for the people we love

On some days, like today. I find it hard to come to terms with knowing that my little boy isn't just disabled. He is severely disabled. My little boy is severely disabled. He may never walk or talk and most likely, he will be wheelchair bound. He has the developmental age of a 6 month old. Mango will be 3 this June. He will be 3 years old and he is developmentally like a 6 month old. He was a 6 month old when he was 1 1/2 years old and when he was 2 year old and now when he is 3 years old. He hasn't moved. When he actually was 6 months old, he was developmentally still like a newborn baby. 

I just want to scream and pull my hair out. Not for myself but for Mango. For a boy who struggles everyday with things that we take for granted. Things that I take for granted everyday because I'm too consumed with taking care of all the things he has been disadvantaged of and things that come to us so naturally, like muscle movement or vision or hearing. 

I am also scared. I'm scared for me. I'm scared that my life will be too short or if I will get a terminal illness that takes away my ability to take care of my children. I'm scared of my heart breaking too many times, it decides to give up.

I'm scared for Mango. I'm scared for his future and what he will be in the next few years. I'm scared for when he turns 5 and he will have to go to school. I'm scared of him going to school. I'm scared of how he will be treated. I'm scared of how the world will treat him. I'm scared that his heart will hurt. I'm scared he will meet horrible and arrogant people that will leave a scar on his heart that I can't mend. I'm scared of losing him. I'm really scared of losing him. I am also scared that he will never know how much I love him. I'm scared that he will never know that I would give my heart to him if he ever needed it and I wouldn't think twice. I'm scared of a life without my heart because he is my heart.

I'm scared for plum and what his life will be like. I'm so scared of how his heart will break a little when he meets mean people that will give him a hard time about having a brother with a disability. I hurt for him knowing that he will have to face these things in life. I'm scared that he will know what it means to hurt everyday to see a loved one struggle with the things that we take for granted in life. I'm scared for his heart.

My dearest husband, who has been the strongest out of all of us. I'm scared that one day he will break and I wont be strong enough to hold him the way he holds me but I sure damn will give it everything I have. 

How do you protect the ones that you love from so much pain in your life. When all you want for the people you love is happiness. If the price I had to pay was my life to give my loved ones true happiness. I would do it. I want them to never know what pain and grief feels like. I want to protect them from all the evil hearts that are searching to break something. How though? How do I do it?

2015

Happy New Year!!! 

Who's ready for a new year? I know, I am. 

As we start off the new year with 6 days of fever and a trip to the hospital, I take this as a sign that alot of good will happen in the near future. I pray for many good things that I never saw in 2014. I hope for great achievements. But most of all, I hope for more easy days for my little boys. Days that are filled with having days off from appointments and getting to spend some time with them.

They're growing up so fast in front of my eyes. Some days it feels like a tape recorder playing on fast-forward and before I know it, I'm tucking them into their beds and kissing them goodnight. In 6 months Mango will be 3. THREE! That's incredible. I have been a mother for 3 years. 
Plum on the other hand has been on the run. Cruising along and crawling so fast he trips on his chubby face. He hasn't stop talking from the moment he said 'Mama'. I love hearing his sweet little voice, telling me stories of his oh-so-interesting life and next month, he will be 1. One year, since a gave birth to Plum, yet the birth is still fresh in my mind. I remember him in my arms and his cry that nearly made everybody's ears fall off. I can still remember, just like it was yesterday. 

So, Im glad that 2014 is over. It brought many great things to us as a family but we are ready to move on! 

I hope this year brings many good things your way. Thanks for reading. =)

I've got you darling

I practice standing with Mango, everyday. Every. Single. Day. Some days I doubt if he will ever make it there and some days, my belief is so strong, that I can't understand the days that I ever had a single doubt. On the days that we don't have any appointments, we spend alot of our time on the floor together. Plum and Mango have learned to love each other and enjoy each others company, screaming, scratches and everything else that comes with brotherly love . Plum has been a great help and motivation for our Mango. He just seems more willing to do things while his little brother is sitting in front of him doing the same thing, together. 

Just like brothers, Plum has his back. 

Always ready to sit or stand with Mango. When Mango is on his tummy, Plum bend his head to the side and goes 'hmm?', as if to ask Mango is everything is ok. 

So today, while we were practicing our standing, leaning on Mango's special cut out table that happens to be the right height for the both of them to stand and lean on. Mango tried to move his left leg, lost balance and fell... Fell into my arms that were waiting for him. Yes, I was sitting right behind him ready to catch him, if he fell. I wouldn't have been anywhere else. In a split second, just as he lost his balance and the moment before I caught him, I saw panic in his eyes and as I caught him, I reassured him 'I've got you sweetie'. Yes, I've got you. I will always catch you, pumkin. His face relaxed as he realise that his Mama was right behind him, ready to catch him when he fell. My heart melted and I suddenly felt like crying. It was the moment that I realised, he knew, that I would always catch him if he fell. It'll never be any other way. Ever.

My little boys. Gosh, I love nappy bottoms. 

8 things to never say to a special needs parent

As a parent of a special needs child, I always find myself in situations where people find it okay to comment on me about my children, faith, parenting and everything else they can think of. I know, I know, I know. They mean well. Blah blah blah blah. 

1 - "I'm Sorry''
While a statement like this seems like the only thing you can say sometimes. It actually is offensive to the person who your saying 'sorry' to. 
What happens next? What do we say? "don't worry", "He is okay", "Oh, it's nothing". There is no reply for this. I'm not sorry that my kid has a genetic disorder. He is my kid, after all. We don't need or want sympathy or pity. We really don't want it. So by saying 'sorry', you are apologising for us being in the situation we are in, feeling sorry for us. Again, I say this, we don't want pity.   

2 - "I hope he gets better soon (Shifa)" (not including when he is sick)
My son has a genetic disorder. A genetic disorder is not a sickness. It can cause his body to have a low immune system but the genetic disorder itself is not a sickness. His hearing impairment is not a sickness. His vision impairment is not a sickness. His lack of development is not a sickness. Nothing about him is sick. And because it is not a sickness, it can not be cured. It is, what it is. Just the way it is. I know alot of people find it hard to accept or understand that something like this is not a sickness. My family took it very hard always asking what it was that we could prevent this from happening again or getting this again (like it was a some virus that you could pass on) but it's not. It takes a while to accept the fact that it just happened. So please don't say this. Because he is not sick.


3 - "He looks fine, he doesn't look like he has anything"
Thanks for trying to make me feel better. It didn't work. So far, in our two and a half years of life, nobody (except my sister) has actually admitted that Mango looks 'different'. Than you sister. I love you.
We know he isn't 'typical looking'. That's how we found out about his genetic disorder in the first place. His facial features. We know his ten fingers and eleven toes look weird. Yes, That's right. I just said eleven (two bones in one toe). We know certain physical features gave the genetic disorder away. 

4 - "At least you have a normal kid too"
There are two parts of this common saying. 
1. The word 'normal' . Your meaning of normal could be very different from what my meaning of normal is. Your normal could mean, waking up in the morning, feeding the kids breakfast and going to meet friends on a play date, while my normal is waking up, feeding the kids as fast as I can and rushing out the door like a mad women to try and reach our hospital appointment in time. There is no normal. 

2. You are so very very wrong. Seeing your younger child doing all the things the older child may never do, is a constant reminder of the loss that you feel. It reminds you everyday that Mango may never get there. A daily reminder that Mango may never learn to solve his problems or learn the hand and mouth co-ordination skill or learn how to lift himself with his hands but only his elbows and do so much more that your 6 month old is already doing. A reminder that your darling Mango, is so different. It makes you sad everyday, reminding you that your 'nest' that is eventually supposed to be empty, will never be. It's a constant reminder, to you, every time, you look into the two most perfect faces who think the world of you, of how your hopes and dreams were once crushed by the reality of 'never happening'.

5 - "God only gives you what you can handle"
As much as I believe this line to be true. I feel as if, when someone says it. It just sounds so rude. Pretty much like 'Stop complaining'. For me, this line has always been brought out at the wrong time and wrong place for me. 
My husband and I actually spoke about this line over dinner once. We spoke about how, one simple sentence could mean so many things and none of them were nice. 
I know, I can handle things because we do. This doesn't mean that we aren't allowed to share our disappointments. This also shouldn't mean that we become too worried to say anything because we feel that someone is going to take our disappointment the wrong way and think that we are ungrateful for having Mango.  
Sometimes, I feel like putting my hand up to their face and saying 'Just shhh. Just. sshhh. ssssshhhhhhHHHHHHHH!! Don't say another word'. *High five in the face*

*I can feel my blood boiling and my heart starting to beat a little faster*


6 - "I know so-and-so and they know so-and-so's, sister has a child with a genetic disorder, so I get it."
You don't get it. You don't even get a small bit of it. The fact that you had the audacity to say such a thing, just proves that you don't get it. Unless you have walked in my shoes and been through what I have. You don't get it. 


7 - ''Maybe you need to pray more"
Ahhh... I have actually got this one before. It left me crying in the car for hours. I don't even have the word to explain this one. 
The first thing our geneticist told us after breaking the news about Mango to us was "There is nothing you did or didn't do. Should have or could have done, to prevent this. It just happened and there is nothing to explain why. It just happened."

8- Don't ever say "Retard" or "Retarded" 
The moment I became a special needs  mother. The word retard has suddenly become extremely offensive. The medical term for Mango's cognitive delay is 'mental retardation'. The word is tossed around so lightly and used for jokes, noone really knows it proper meaning anymore. Delay is obviously a better use of language. Especially when you are talking to me. Its a horrible feeling. The moment the word is said, I get this knot in my stomach and without even knowing it, I take a mental note that the friendship I have with this person is a little ruined, a little trust is lost and I plan on keep my distance to protect my heart from being hurt this way again. The word is so backward-living. People I love, tell me I shouldn't be offended when they use the term retard or retarded. But I am and I always will be. Why should I not be offended. Please explain to me this. If so many people in this world find this word offensive, but the parents of children with special needs are apparently being label 'too sensitive' when we get upset because of this. How is that fair. The word has been changed, they have changed it to 'delay'. Use it. 

While everything here is said from a nice place in everyones heart, Please understand that most of the time, they are actually offensive. How else would you know if we didn't tell you, right? You wouldn't know. Most of us parents understand that people always mean well,  so we don't say anything. Alot of the times we just nod and smile. But you just never know what type of mother, might be holding on to the last straw on the camels back with all her might, hoping she wont break. A small line like this could go a long way and just might be the thing that makes her break. Think before you speak.

Reminder - I am important too

This is a post for me. A written post, to myself. This, is also an attempt to salvage what ever is left of my sane mind before I completely loose the plot. 

This moment right now. I can see the future going down hill from here. I feel like I'm trying to catch myself from drowning in an ocean of tears. I guess the thing is, that I knew this moment was coming and I just had to prepare myself for it to come. Except I'm starting to question myself, if this will be the cycle of my life. I take things on, not thinking how much it will weigh me down and then I sink. Is this what it means to take on one day at a time? Is it really what that means? Because if it is, then it's taken me two and half years to realised that somehow, as right as it seems, its so wrong. Except there is no other way.

The mother in me, the mother that I am, I can't allow myself to drown in my emotions when my babies need me. I think the past few months of Mango's appointments and hospital stays aren't only getting to me but to him as well. He has been so needy and cranky while Plum is teething crazy and extremely clingy. 

Today, I hit that brick wall, that I could see from a mile away. I hit it so hard, I couldn't take the impact of the crash. I put the kids down for a nap and the moment I stepped out of their room, it felt like my heart burst and I went crashing to the floor. I flooded the house today. I flooded the house with my grief, my guilt, my pain and mostly... my tears. I couldn't catch my breath, holding onto wall for support. What have I become? Where have I gone? Where am I?

I don't know what it was that got me back on my feet. I just somehow did. So much has happened in such a short period of time and I haven't even found time to allow myself to take it all in. I just kept going. So today, of all days, one of the busiest of all, my soul couldn't take it anymore and broke.

This is a reminder for me. That I come first too.
How? I have no idea. I can't even find time to go to the bathroom, how am I supposed to find time for myself. I don't even know how to take time to myself. How do you have alone time? What is it? What do I do, exactly?

I have, spoken to all those mother's out there who have a children with additional needs. So I can't say that I haven't been warned about the hard times that will get to me. I just have to keep reminding myself that it will get better. 

I want to take this moment to reflect on everything my family and I have been through. I want to soak it all in. Every joy and hurt that I have just pushed aside. Every bit of stressed that I ignored and told myself, it wasn't real. This is my moment to take it in so tomorrow I can stand tall again and be the best mother I can be. 

For all the mothers who have children with additional needs and myself, who are reading this. I want to tell you that you are Great. You are Strong. You are Wonderful and you have done so much great without even knowing it (because really, when do we have time to look back to see what we have done. We just keep moving forward). 

We are important too. 

We are our children's voices. And to make our voices heard, we need to hear our own first. That voice inside our head that keeps reminding ourselves to take a break, have a coffee, have a walk - because when we come back we will have stronger voices and with those voices we will move mountains. 

Most of all - this is a reminder for me. 

______________________________________________________

Dear Me,

Please read when you are feeling crap. Remember, we don't want this happening again. For everybody's sake.

From Me.

Chromosome 18 (Distal 18q-) - PART TWO

Please read "Chromosome 18 (Distal 18q-) - PART ONE" before reading this post if you haven't already done so....

Facial Features:
Facial features do not affect a person's health or development. People with chromosomal anomalies may look a little different from their family members and people with similar chromosomal anomalies may also look very similar to each other.
People with chromosome 18q- may look like they have a flat/squashed face. The space between their eyes might be a bit wide. They may have an extra fold of skin covering the corner of their eye. Their ears might be lower and look a little bit different from an 'average' persons ear. 
Just because someone has an 18q- deletion and they may present all these facial features, it is important to remember that they may also look very much alike to family members.

When Mango was born, I'm pretty sure what alerted the doctors in the beginning were his facial features. Thus, the beginning of our roller coaster ride. 
His faced looked very round and flat. His eyes were set wider apart than what I had seen on 'typical' babies and his ears were low. I noticed this because his ears were not in-line with his eyes. They were lower. 
We had originally thought that he looked very much like his dad. I think Papa Bear and I both felt in our hearts that something was a little bit off but we just couldn't put our fingers on it. Until ofcourse the geneticist came to see us in our hospital room. Even he didn't think anything was wrong but still a doubtful feeling lingered in the air urging us to look deeper. So we did. Thank God. 

Immunology:
It isn't that common to have low levels of IgA but some people with distal 18q- may have this. IgA is a protein that helps fight off infections. People who have a low level os IgA are more likely to get infections and colds. This can be managed by treating the infection, allergy or asthma early.

It was only recently that I started to wonder if Mango had an immune problem. He was always getting sick and if he is near someone who is even the slightest sick, he usually gets a worse case and it stays with him for a good few weeks to month. The blood test result that we had done, came back normal. So I'm still floating around in the air wondering what I should do now. There has to be an explanation for him getting sick all the time.

Lifespan:
When someone is diagnosed with 18q-, the family's first question is often 'What does this mean for my child's lifespan?". Speaking generally if the person is in good health, there is no reason that they shouldn't live till adulthood. 


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.

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.

=)  

Chromsomes

I would say I know quite a bit about chromosomes but if you asked me to explain everything I know to you, I wouldn't know what to say. I would have a mind-blank. However, I know that I have asked a few family member and few friends to join me on this journey and follow us, as I slowly but surely update a little bit about our lives when ever I get the chance. So here I go... Im going to try and explain chromosomes in the most basic and simple form as I can before I explain Mango's chromosome anomaly (abnormality).

In every human body we have cells. Cells, are what make up our body. If we were to take one cell from our body and place it under a microscope, zoom in really close we would see that so much is happening in just ONE tiny cell. In each cell we have chromosomes. In each chromosomes we have genes. These genes tell our body what to do and how to do things. (So when our child either has a duplication or a deletion in the chromosome, the doctor's tell us how much of it is missing and added. When they tell us this - they are actually telling us which part of the gene in the chromosome that is missing). 

Every person has 23 pairs of chromosomes. One copy of each chromosome from the mother and one from the father.
Mother - In a mother's 'egg' she has one copy of chromosome 1 to chromosome 22, and the 23rd chromosome being the sex chromosome, which would be an 'x' chromosome. 
Father - In a father's 'sperm' there is also only one copy of chromosome 1 to chromosome 22, and the 23rd chromosome being the sex chromosome. The sex chromosome from the father can either be an 'x'(female) or 'y'(male) chromosome. In saying this, the sex of the baby is determined from the father.

This is what two pairs of chromosomes look like (in a cartoon kinda way): 

Example

Asking yourself what your looking at? I asked myself the same thing... 

Every copy of a chromosome has one short arm (p arm), a centromere and  one long arm (q arm). This means every pair of chromosomes have two short arms (p arm) and two long arms(q arm).

So, you see the dark shade of purple labeled 'P'? This is what scientist and everyone else call's the 'P arm' OR 'the short arm'. The lighter shade of purpler labeled 'q'  is either called the 'q arm' OR 'the long arm'. The yellow circle in the middle is called a 'centromere' which acts like the body part of the chromosomes holding the two arms (p arm and q arm) together. The centromere is the centre part of the chromosome but this doesn't mean it is always the centre of the chromosome when speaking about the length of it. Then there is an outline, outlining the entire chromosome which is called a 'telomere' and this keeps the entire chromosome together. 

The genes inside the chromosome are identified by using a special type of dye that defines their differences. Each part of the chromosome will be affected differently when the dye comes into contact with them. By this happening it identifies certain 'G-bands' within the chromosome which are labeled by numbers. The smallest number starting from the centromere to the largest number ending at the end of the arm furthest from the centromere. 

Something like this:

Chromo 18.org

I'm pretty sure I haven't covered all of the facts about chromosomes but I think it's most of the things that you need to know about Mango's chromosome anomaly.

Fact: In saying all that I have said. I would like to add one last thing to this short post. I found particularly interesting even though it meant nothing. Each chromosome is a certain size. The largest of the chromosome being chromosome no.1 to the smallest chromosome being chromosome no.22. 

Thanks,
xx


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.

Chromosome 14 and Chromosome 18

Chromosome 14 and Chromosome 18 are Mango's affected chromosomes.

There.

I said it.

Finally.

I'm not sure why I kept the chromosome numbers a secret the past year. I was mostly worried about me telling people the chromosomes involved and they would search it up on the internet the same way I did. Find all the information that I found and freak out. Like I did. I also had a small hole in my heart worried about how people would look at Mango after they knew what they did. So many other small reasons, like I was trying to protect him from the worst. I think now, I was trying to protect myself. Protect myself from opening up the wounds that haven't really healed. The wounds that probably will never really heal but only close with a thin layer of skin.

When we received the diagnosis for Mango, the geneticist couldn't have stressed more, that we should not search online. Ofcourse, that's exactly what I did as soon as we got home. I can't say exactly that it was a bad thing or a very good thing but it was definitely more good than bad. I shocked myself with all the pictures I saw and all the things I read but in time I came to accept that, that could be the worst and I would have to live with it somehow or another. Everything I read or learnt something that had something to do with Mango's chromosomes, I would share with my husband. I feel like I was trying to peel our hearts open layer by layer just to torture myself so my husband and I would stop feeling emotions. The more it hurt to read, the more times I would reread and reread what I didn't want to read anymore. In time we came to accept it all somehow, ready for everything we had learnt.

I would also like to share with you, everything I have learnt about Mango's unbalanced translocation.



P.S. Thank you from the bottom of my heart for sharing this milestone with me in opening up about Mango's chromosome numbers. It's taken more than a while to come this far and I am very glad that I have finally gotten this off my chest. Most of all, thanks for putting up with all the ranting...

Keep in touch!

Number 2

Yep - thats right. We're pregnant again! We are finally here now, Officially calling it a pregnancy and not a 'if this is a pregnancy'. YAY!! Three cheers to us!! Mango is going to be a big brother! 

When we first found out, it was quite weird. Me and hubby had already discussed that we were going to do testing to check out in this bub have a chromosome abnormality or not. So, when we did find out - We knew what direction to go in.

At 7 weeks we were booked in for an ultrasound to determine how far along in the pregnancy I was, so we could book a date for a CVS (Chorionic Villus Sampling). In English - It means to take a piece of the placenta, test it and culture it so all the chromosomes can grow and test that again. Don't worry. you don't need to feel stupid. You should have seen the look on my face when the genetics councillor said CVS. I didn't know which question to ask first. What is a CVS? Who is a CVS? Let's not get started on what a fool I made myself out to be.
At 13 weeks, our CVS was performed. I had done a tiny bit of research about what a CVS was and it seemed like a very basic procedure. All the 'experiences' I had read were very good ones saying that it didn't really hurt and that they went back to normal routine within a few days. LIIIIIEEEESSS!!!!
ALL LIIIEESSS I TELL YOU!!

I didn't mean to be that dramatic.

It was a painful procedure. I have to admit that. The needle sticking inside my belly and pushing and pulling to suck up a bit of placenta. Gross and painful. I remember the Doctor telling me to try and not tense. How do I NOT tense my body when a needle is stuck in a belly and keeps poking away at my placenta. Please tell me. Thats right. You can't. You just stay as still as you can and hope that you survive the next few minutes without wrenching that needles out yourself. The End.

The waiting period was definitely like waiting a thousand years. We waited and we waited. Every time a private number would call, I practically screamed hello as I picked up the phone. Probably, wasn't even fast enough picking up the phone and Im pretty sure most of what they heard was the end of hello 'OO O O O oo' .
When 2 weeks and 1 day finally arrived. I couldn't wait any longer and called our geneticist. Receptionist told us that results weren't in. The sound of my despair probably made her feel bad so she told me she would get the geneticist to call the lab and call me by the afternoon.

Afternoon came and I received a call from our geneticist. For some reason My heart dropped as I picked up the phone call. 'GOOD NEWS' she announced. I don't know why I was thrilled by this point but all I could say was 'which part of it is good news?'. Im very pessimistic aren't I. I think I see that now. But all of it was good news and I didn't know how to feel. I still don't. We are very excited to have a new edition to the family. Giving Mango a sibling will also hopefully help him in his development. No longer a new couple with a baby. Somehow 4 feels like a family.


*few tears of joy*

Thank you for sharing this happy time with us.

Please keep us in your prayers!

To the me of tomorrow - Mango's 1st

Dear Mama Bear,

Your probably reading this because you know you needed to hear it today. Today, because today is Mango's first birthday. Somehow its a bitter sweet feeling. I understand the pain and joy you ar feeling right now. Well, because I'm you, writing this for today. To let you know that I understand how hard it is to be happy and yet be so sad at the same time. Mango is finally 1! We waited for a long time for this day to come and at the same time we wished this day would never come because of the reality check it would bring to us. I'm here to tell you that it's ok. I'm here to tell you the things we want to hear from our loved ones but they don't really understand our situation enough to tell us these things. 

I can't promise you that it won't hurt. I can't promise you won't cry and I can't promise that the future holds many different days than today. All I can tell you that what ever your feeling is ok. I understand that when you look at Mango would will see a child that has fought for a whole year. He had to fight, a fight that no person should ever have to fight and he had to fight it on his own. I understand that when you look at him to see a 2 to 3 month old child rather than a one year old who should be sitting atleast by now. I understand that it will hurt you to celebrate his one year birthday but wonder why your even celebrating because he kind of isn't really one at all. I can tell you why. We are celebrating not his birthday but his life of 1 year. We are celebrating that he is with us today and remember that not many bubs make it through pregnancy to be with family. We are celebrating his achievements in life and all the things he has accomplished including all the things our doctors told us he would never achieve. We are celebrating that fact that he knows Mama and Daddy. We are celebrating all the support we have had during this full year of therapy appointments, genetics and paediatrician appointments. We are celebrating your sons heart, the fact that it's beating strong refusing to stop. Most of all we are celebrating the fact that you are a family. A family that a bond has grown stronger than most families out there. Today we remember that we are blessed to have such a wonderful child who have changed us as people for the better. A child who has changed the way we see things, say things and do things. We are better people and without him, we would never know what it's like to be the better person we are today. 

You are a mother. A compassionate, caring and loving mother. You have given everything to this day and for that you should be proud. I know its hard and I'm not telling you that you shouldn't be sad. Your allowed to be sad. Noone should tell you that you shouldn't be sad. If you want to cry and laugh at the same time, then go for it. This is not only Mango's day too, this day if celebrating you too. The way he looks at your for reassurance before he does something because he knows you would never let anything happen to him. You are his whole world. You don't remember all the time but I'm here to remind you. 

From Mama Bear

Year 10 class

I was in my year 10 art class sitting down when there was a knock on our classroom door. A lady popped her head in, smiled at my art teacher and walked in with a young special needs girl holding her hand. All my years of being alive and I had JUST realised that special needs children can go to 'normal' school and that they have a lady following them around class to help them with work. I still don't know these people who help are called. Anyone?

Except all I remember that it was at that particular moment that I realised that I wanted a future with special needs. Whether it be working with the elderly, or playing with children or something along the lines of that. I knew that I wanted my future to be a part of something unique and special. I was always one of those kids that would be walking in a shopping centre and see a child in a wheelchair and STARE like I had never seen someone in a wheelchair before. But heres the thing, I know that my staring probably looked so rude as if I wasn't brought up with manners and I understand that if I was in that parents position I would want to slap me on the face. In my head though, it was a whole different story. In my head (I remember this very clearly so some reason I don't know why) I was thinking that if I stared at this kid with a worried face as my expression, I would kind of show that person that I was caring and that the parents would understand I actually wanted to be friends with this kid and help this kid and not the other way around. I don't know why that made sense to me at the time. Sounds twisted doesn't it? I know. I have no explanation for the way my brain works. It scares me sometimes.

However, I never pursued that goal and only god knew why. Now years after, I understand that my life was written out for me and even though at the time all I could see was my goal, The Lord had a much higher and more rewarding goal for me in my future. It was probably from when I was a child and I used to stare at special needs kids that it was just the beginning of my journey to become a the mother I am today of a child with a disability. I sit back and I realised yet again how great Allah is and how he prepared me for such a rewarding role in life.  

Dr A - prediction for the future

Aaaahhhh... Its been a while. Me and you. Together. You know... sitting here infront of our screens sharing this moment...

Eeeeerrrrmmmmm....

Well, we saw Dr A this afternoon (Dr A = Paediatrician). Booking an appointment to see her is like trying to book for the president. We waited three months. Not because we wanted to but because she was booked out. Why? Because she is AWESOME! Like my kid. His awesome. You know that.

We sat in that room for an hour talking about Mango. While he sat there trying to join in the conversation with us.

Mango: Excuse me. I know your speaking about me. Don't face my pram to the wall! I can't see!
Well, I assume that was what he was trying to tell us with all his babbling and screeches.

What I thought had been very mild spasms Mango has been having, turned out that it might actually be seizures. Damn. All I know about seizures are that they could fry your brain. Sorry, no nicer way to put it. Fry. Fry like frying something on a fry pan till its burnt. Damn again. Which if we can really confirm they are ACTUAL seizures then that would explain many things such as his development. Oops. Thats one things BUT its a big thing. ONE. BIG. thing. Booked for an EEG. You know the most stupid thing about an EEG? An EEG is supposed to pick up seizures and high brain activity. The only way they can detect that is if this poor person has a seizure during the scan. WTH? Seriously? What are the chances. Most the families I have met who have children with epilepsy tell me that this scan is pretty much useless. Can I say damn again? Damn.  Oh boy... This isn't even the beginning.

Dr A tried to do a small assessment on him based on her own knowledge and her experience with other children she has worked with during her 15 years as a paediatric doctor.
Her overall conclusion was that Mango is a happy and healthy boy. He will learn to communicate in a way that he finds best for him, in his own way. He will probably never have the chance to go to a 'normal' school or be 'normal'. He probably may never talk or walk but we can only hope that he will some day. He will always remain the little boy he is today. Never being able to be independent in any kind of way. He has medical issues and we can definitely try to get them all under control. *sighs* - all I remember was that voice inside of me screaming louder than Dr A was talking. I wasn't shocked. I was hurt. It just doesn't change. The hurt doesn't change. it always hurts the same and as bad as it did the first time. I slowly started to tear up, so I turned my face away from Dr A to take a look at Mango who was staring into space. I just wanted her to stop. Stop talking. I know reality and I accept it. I just don't want to hear it.. but she kept going. She said - I do believe that your journey will be a very difficult one and there will be many obstacles along the way. I know how hard it is to remember and know but as much as it will be a very hard journey, it will also be a very rewarding one too. As his doctor too, to him accomplish new things will be rewarding for me because we will be seeing each other for a very long time (aka for the rest of his life). - Don't you get it. I don't want to see you for the rest of Mango's life. I never want to see you again! -  We will continue with the therapies and start with speech, - as if we dont have enough of therapies to even make time for more. - We will get to know each other other better and work through things as the years pass.  -Far out. I think this is the start of a bitter sweet relationship. - 

We walked out of room in silence. Walking to the car was silence. It felt like the silence was making us all deaf and this one time, we would let the silence make us deaf so we couldn't hear our own thoughts...

Dear Shopper

Someone shared this with me... It's so sad but so true. Once upon a time I was the shopped (sad to say) but now I'm in different shoes too. 

It is written by a mother who has an autistic son. April is the month of Autism Awareness. Please support them by clicking on the link below. Bringing 'typical' children together with children who have special needs teaches our children to be aware. Involve them in helping. Teach them. Don't be afraid of the unknown. 

http://www.autismawareness.com.au/get_involved

It is these lessons that will define who our children will be in life. To have an open mind and most probably have more knowledge than many other people will. It's lessons of kindness, love, affection and so much more by getting them involved in something so simple. We just have to reach out towards it.

Dear Shopper,
Yes, I know. I’m well aware that my child is screaming. Not just a regular scream, but an ear-piercing, sanity-shattering screech. Even if I wasn’t seeing and hearing it, I would know by the expression on your face.
Clearly, you have raised your children better than me.
That is what you were wanting to say, right? There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion or better yet — give knowing looks to other shoppers passing by.
I have no doubt that you have wonderful, well-behaved children. Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children. Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.
And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives. You are, in all probability, a good person. You probably don’t mean any harm.
This is what complicates what I want to say to you. Because, despite my anger towards you, I happen to have been raised well too. I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected. It is misdirected because I, too, have stood in judgment of someone like me. I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children. When I have children, mine will never behave like that.” I, like most people, wasn’t quite as obvious about it as you. I didn’t stare or make comments that could be heard. But I was every bit as decided. So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.
The nice thing about human nature, however, is that it can be overridden. And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions. Then presto whammo — you are a new and hopefully improved person.
Let me introduce you to my child. Like you, I marveled at the miracle of life upon becoming his mother. Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him. Like you, I had certain dreams for my child. There your path and my path diverged somewhat.
My precious child is autistic. Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter. The truth about autism is that it encompasses a wide spectrum of abilities. And, like you and me, every autistic child who has it is different from the next. Yet they do often share some similar traits – sensory overload and meltdowns are one of them.
Every person on the planet has what I think of as an internal alarm system. Most of us have ours in good working order. But some people with autism have what I like to call a hair-trigger alarm system. Theirs can go off with what seems to average folks like little to no provocation. There IS always provocation. Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off. And when it does, it’s loud. Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them. When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm. It isn’t his fault. And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.
I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated. It hasn’t been so pleasant for me either. Problem is — I have to feed my family, pick up prescriptions, etc. just like you do. And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public. I have to leave the house and so does my child. Because I have to teach him about the world. I have to let him practice controlling his alarm system. So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.
With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children. And for some of us, our dreams will have to change for our children. We may need to re-define happiness and success. For life is like that. We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.
I’m hoping that your single human interaction with me has given you an opportunity to be a better person. For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me. All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm. You could be the bright spot in our day. And, then, if you want, you are welcome to ask all the questions you want. Your curiosity doesn’t offend me in the least. Most of us aren’t the least bit upset to talk about our kids – any more than you are. If anything, it is an opportunity to educate and dispel myths.
And, maybe, just maybe, you will be standing there when the alarm gets turned off. Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.
Who knows? Maybe I’ll get to see the one hidden behind yours. ♥

By Flappiness Is

MRI

Mango had an recently had an MRI for his brain. Can you have an MRI for other parts of your body because if you can, I certainly didn't know that. The surgeons would be like 'Do you know where the MRI will be done?' - I would pretty much be like 'heh?! His brain, no?'. I sat on the hospital bed, holding Mango and watched my little boy smile and try and talk to me while the surgeons put the gas mask around his mouth and nose. He was talking happily and watching him slowly fall asleep felt like I was letting him go. We gazed into each others eyes until he slowly drifted away and the whole time all I could see were complete trust that my baby had for me. I somehow felt as if I was betraying him. My heart was breaking, becoming whole and breaking all over again countless times. In a split moment I visualised my son slipping away from me rather than just falling asleep. I gulped down the biggest rock that was stuck in the throat. Next thing I knew I was being showed the exit to wait in a waiting room where many other anxious parents were waiting. Being around anxious parents pacing up and down and everyone trying to put on a brave face - was a lot of help. Ehh.. Who am I kidding. I was ready to have a panic attack run around the corridors screaming 'GIVE ME MY BABY BACK!'. 

Thank you Allah for my husband. 

He took me for a walk and coffee to calm the nerves. All while the image of Mango staring at me until he fell asleep in my arms. I have to admit, I have never drank coffee faster than I did that day. I just wanted to get back, walk up and down the hallways and wait for a nurse to call me in. An hour later, the anaesthetists we spoke to before the MRI came to let us know all went well and that they were just going to give him a few minutes to wake up. About 5 minutes later I heard a loud screeching cry coming from inside the ward. I knew straight away it was Mango because he has that hold-you-breath-and-scream type of cry. A nurse called me in to calm him down which I happily did. After 2 hours in recovery, we were allowed to go home. I don't think I could ever do that again...