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.

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!

What car now?

So on our journey to become a family of four.. now still a family of 2 and half + ofcourse the one meatball that is in my belly rolling around. We felt the need to look for a new car. What car? One with a big boot.

See the problem is, we have a pram (a VERY. BIG. BEAUTIFUL. BLACK. pram) that can just fit in our boot. (We have a hatchback by the way). Which means no room for shopping or another seat. We also have coming our way, very soon, a stroller. A specialised stroller to fit Mango's needs. Things like head support, back support, leg support and all the other types of support you need when your 14 month old cant even roll around yet. So yeah. What I thought was a 15kg stroller turned out to be a 20kg stroller. My tail bone and back muscles are already aching just as the thought races through my mind. Our current pram is about 11 - 12 kg according to size, folds quite compact. I think. hehehe

So the conclusion was that if we are going to have two babies in a stroller, there is absolutely no way that it will fit in our car unless its on the roof (and that is not an option so don't even start to think why I can't do it myself).

It kinda sad though... you know. It was my first car... well one that I called my own that actually belonged to my husband which I claimed as my own.. uuummm no judging.

This car has been through it all with us.

Speaking of double prams. We need to start looking for a double pram that we can customise one of the seats. The stress that has come along with it, is just about as much stress as wondering if buying a new car is really worth it or not.

So I think an SUV is an option now. An SUV with a BIG boot space. 

I think it's time for me to get off the laptop. I can feel the little meatball kicking at the laptop. Probably a sign that I should be eating or something....

This is me.. the next 10 minutes...

Hello you! It feels like its been ages. 

Mango recently got a new chair. It looks like someone cut a piece of their corner wall out and added cushions around it, to make it look 'professional'. It sits on the floor, a wedge between his legs to keep his legs straight and to keep him from thrusting/ arching and strap that hold up his upper half. i feel bad putting him in because it looks like I'd tied him so he cant move. Which in reality I actually have done just that, but not for the reason I feel but for the reason to hold him up so he can play with toys. Because seriously, lets face it. Hypotonia is the devil. I think it is anyways. Mango has also got his own special table that wraps around him just so neatly. 

On a different note. If anyone reads this (which I dont think anybody reads this except me). Mango has finally seen a neurologist for his so called 'seizures/infantile spasms'. At first we decided to leave it and just wait it out since they haven't been occurring very regularly.  Then I get a phone call from our neurologist and she said that she spoke to her colleagues and they all think its seizures and to start him on medication. We need to go through blood work first to make sure its all ok. She prescribed us Epilim. Anybody? Anybody ever use this before? Experiences please? Im not asking. I'm begging. 

I have met many parents with children's who have been diagnosed with seizures but  the medication they use are much stronger like steroids and stuff. Oh My GOD. Don't get my started on the stories they have told me about how all the strong stuff effected their kids so bad. It was scary. 

All I see online are medical websites. I don't want a medical website. I want parents experiences because after all. Parents know best because they see EVERYTHING. And doctors? I don't know. I trust them to a certain extent but come on now, most doctors go off by just guessing their way through until something works. They tell you all tiny weeny side effects that are 'oh not that bad' and they make the reasons to use the medication all fluffy and beautiful. 

So please, anyone out there. Parents, people, someone.... anyone?

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

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

Parents

Being a parent of a special needs child is truly something I would call an emotional roller coaster. You think nothing can get worse but somehow it does. You feel as though your getting your feet on the ground again and somewhere along the road you tripped and fell on your face realising that your not quite there yet. You tell yourself and deep down in your heart you know that one day, you WILL get there but damn it - someone please tell me WHEN?!

We, who are so blessed to have someone in our life that might have a disability - understand what it means to be put to the test of what our unconditional love means. We wake up every morning ready to start a new day. Ready to fight for our children's challenging abilities. Whether its the simple things that we are trying to succeed or the more difficult things that us 'typical' people carry out as nothing. We NEVER prepare ourselves for what the next day has in store for us. We don't bother because we don't know what it holds. Today is already too much.

I start to think of all the people that I have crossed paths with during my life as a mother of a special needs child and I being to realise that there is a pattern of ignorance when the word 'special needs' is added to the conversation. Early on after Mango's diagnosis, I had to make the decision on how I would explain to people who had no experience of caring for someone with special needs. As much as I feel like throwing my arms and legs in the air like a child throwing a tantrum, I chose to educate people about children with additional needs. Ofcourse, because I love the fact that I put the extra stress on myself but I do it anyway. If not for myself and my sanity but for Mango. All people see from special needs or disability is hard, limited, worthless, handicap but noone ever stops to look at my child to only see that inside those loveable eyes there is a warrior. A strong soul that refuses to stop trying.

So heres the thing... When me and husband found out we were expecting a new addition to our family - it didn't start off by going to centrelink to fill in form and accidentally tick the box 'health problems'. All we knew was that we wanted him in our arms as soon as possible and not in my belly. When we were told of Mango's diagnosis, I wont deny the fact that we were both shocked and scared but it didn't mean we wanted to turn back time. We still wanted him. We still loved him the same way when we found out he was on his way. The only thing that was different was the way we would lead our lives. We now knew that he had to fight everyday for the simple things. Seriously fight... We had over 3 months intensive therapy to open up his thumbs. His thumbs!

We spend everyday in what I like to call 'play therapy'. For the days that we aren't spending in  a hospital waiting room, we play. We play opening our fingers, we play chewing, we play sticking our tongue out, we play standing with our whole foot on the ground, we play with turning our heads from side to side, we sing and sign in AUSLAN because unfortunately for my child, these simple things feel like climbing Mount Everest. These simple and natural human abilities have been a battle for him.

Don't get me wrong though, I have no problem with this. Except today, I feel a bit cranky. Please don't be offended with what I say here. I truly do not mean to be rude in any way and I am very sorry if you do.

I truly believe that parents with typical growing children, who have no experience with what special needs is like dont really understand that real meaning of appreciation and I understand that, they probably never will. That is so fine with me because I understand that you can't really appreciate something until you lose it. OR maybe I've got it all wrong here, maybe what I'm saying is that people need to think before they speak. I can usually suck it up when I hear a parent brag about how advance or bright their child is and that's great! There is no problem with having pride in your child for accomplishing something early or even accomplishing something but please don't rub it in the face of a mother who's child is nearly one and can't even lift his head properly. Once - twice - three times and thats enough. Would you in your right mind complain about how your child is driving you insane if the person you were talking to had recently lost a child? No. Daaaahh...

I'm sure many parents know exactly what I am talking about. So please be considerate. We want to celebrate with you, your children's accomplishments but you don't need to keep rubbing it in our face. And those who say things like 'I wish he would just stop walking! He walks to much and touches everything'. Please I know what your trying to say is 'He is very active and sometimes its a bit overwhelming', so please say it as it is and DO NOT say that you wish your child would stop walking! You do not wish that because I pray that god forbid that your child stop walking one day, you will be wishing that even though you never meant what you said at the time - you definitely will be wishing that those words didn't come out of your mouth the way they did.

It truly hurts to the core to see the look in your child face and see deep in their eyes that they want to play with the children but not physically have the ability to do so. It crushes your heart to see your baby not developing and see the kids around him who were born after him develop into strong able toddlers.

OMG. I just realised that I haven't stopping typing. If you haven't got bored by now. Thank you dearly for reading.
xxx

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...

Support

Today, I wanted to talk about support. I want to try and explain to people who want that understanding of what parents of special needs children and special needs children themselves go through. I typed and deleted and retyped and delete over and over again. I feel as if I need to play my part in helping raise awareness for the community and help them understand. I originally started off by trying to write and post up information about certain things and write about our daily lives and the things that we go through (which is also to try and help people understand what journeys we take) except this is different. I think it is anyway. I pray I do this as much justice as it deserves.

I've been to so many appointments and countless times have they asked if I have support. It was only recently that I asked myself, what is support? Is it to help take care of my children, to have someone to talk to, to help me clean my house, to buy my groceries or to cook me food. What is it? Its all of them, one of them or a few of them. Unfortunately, it's never none of them.

Most parents don't really care if the physical support is there or not. We love it ofcourse but what we look for most of the time is the emotional support. Like all families there are always ups and downs and most of them are very similar and some are very, very different.

Physical support is awesome. It is so difficult running up and down for appointments that we parents begin to forget about the life that we are actually leading and for parents who have more than one child, it can be extremely difficult to give all children the attention they need. I mean I'm sure its hard enough to juggle two typical growing children and then we change on of those children to a special needs child - who requires you 24 hours/7 days. No more time left. Helping with physical support can be grocery shopping, running errands etc. and sometimes it's all about giving a parent a five minute break to remember that they have a body to take care of aswell.

Emotional support (I speak for all parents with any type of child)... it's the same for everyone. It changes the way parents and people lead their lives. A small 'hey, your doing great!' can change the whole attitude for the day and make the rest of the week a very good one. Sometimes our days have been filled with stress or bad news and all we need is to let off a bit of steam or maybe some loud thinking with somebody near by to listen but not talk.

Maybe the best advice I can give on this post is that if you ever see a parent of a special needs child crying, the only thing you really need to let them know is 'Im here'. That's all. 
Sometimes our grief and pain get the best of us when we let our guard down and our scar tissue can't keep it together and we break. We break into a million pieces because somewhere along the 2 minutes that we were just looking at our child who can't walk, or talk, or has an oxygen tube attached to their throat, or a feeding tube that runs through their belly button carried by a back pack that has become a second limb without even noticing, we realise that our child may be like that for the rest of their lives. Dependent on something to help them with the most basic things in life. We realise that our child may never grow up into an adult and be that dream that we always dreamt of. It dosen't matter how many times or when we came to terms with that dream, the hurt doesn't change. It always feel brand new. So, just by letting a parent know that you are there, helps. I don't know how and I don't know why. All I know is that when your broken for so many reasons that you can't even remember them all, it helps to just hear those comforting words of someone letting you know that they are there. Knowing what a parent is broken about isn't as important as making sure they don't feel alone.

For all parents... from me to you

.

Mango has been in hospital because of bronciolitis. His been so floppy and weak. I sit here bouncing his rocker and when I look at him, my heart breaks. He fights everyday and so I asked myself what's the difference now? He is still fighting, fighting off an infection. The difference is that the past few days, I've seen him surrender. I don't know how other mothers do it. I look at my baby who is attached to a feeding tube and oxygen. His mouth hangs open because he has no more strength to even holding closed and I ask myself how can I fight for him? I know it's just something that life is - to fight everyday. I thought my heart couldn't break anymore than it had but I as wrong. I as very wrong. My heart breaks as if it were never broken to start with. Mango looks at me with swollen pink eyes and tears streaming down his face, crying for me as if begging me to help him. All I can do is pat his back.... 

Please keep us in your prayers....

Getting carried away with my thoughts

Hello!

Iv been looking around for a few good early interventions for Mango and looking around to see what type of early intervention would be good for us. Home base or centre base?

I was reading about it and their pretty much the same thing just the home base program is more convenient rather than actually having to travel somewhere, they come to you. They provide all the therapists for both. I'm actually very confused.

I have experience with the home base program and I have no experience with the centres. Maybe what I am looking for is a play group? Well speaking of play group... I have found a wonderful play group!

They are called Lifestart. Its early intervention except the waiting list is forever long so for now the playgroup will have to do as a substitute. The first time we went there was fantastic! There were about 6 parents there all with the special needs children and 'normal' children. They had games for all ages. It started off with playtime, then we all sat in a circle and sang some songs and after that all the mums got to have a cup of coffee and discuss our week or what ever the case was. It was mostly what paediatrician is good? What ophthalmologist is good? Who is the best neurosurgeon? You get the drift... I walked out that afternoon feeling really great. As is all my hard work or trying to find a support group of mothers that catered not only for me but your my little boy too. I found them. I felt sad at the same time to realising - I'm a muslim mother and there aren't any muslim support groups out there that I know of. I'll be on the look out.

It was a nice change to meet mother of special needs children. It so different to knowing your not the only one out there and you are not alone but to actually see it with your own two eyes, it feels like whole new perspective. Bringing me back to my previous post of knowing something and actually knowing (feeling) something.

Please if there are any questions or comments. I would love to hear it. Good luck!

11.30pm

Hi people. So here I am awake at 11.30 at night. I had actually fallen asleep and I was coughing so much, I woke myself up. Yes, I have a cold. Unbelievable. I've got an Orthopaedic appointment tomorrow at 9am. Great.....

You know whats funny though... I'm sick and have been sick for around 4 weeks now. First week I had the fever  second week I had lost my voice, third week I had a bad cough, the forth week I have a flu and to top it all off I'm pretty sure I jinxed myself when I told the doctor 'I was glad the cough is over' and it came right on back without any hesitation. I have a wonderfully crap immune system right now. 

I have been packing it with vitamin D, 3000mg of vitamin C, probiotics, prenatal vitamins, cold and flu tables - need I say more?... 

So while I have tissue stuffed up my nose and a dry cough that I'm praying Mango or my husband doesn't get... I'll still be bobbing around like a loser wondering what I should write next. 

All the best! (I need it more than anyone right now, don't I)

I understand his misery....

Heat Rash

So Mango has been dealing with heat rash the past few days. Poor bubba. His chest was red-purplish. In the afternoon I decided to give him a cool bath and settle him down for the night. I put him on the changing table and look away for a split second only to turn back to him to see blood all over his chest. He has scratched himself till he was bleeding. His nails weren't even long enough to scratch but his managed to make himself bleed. I stood infront of him for about a minute shocked and not knowing what to do next. I grabbed the closest piece of cloth I could find and wiped his chest. Only three scratches but lots of blood.

I put mittens on him for the night but he hates them. His was trying to rip them off using him mouth. 

Heat rash

Heat rash is also known as prickly heat or malaria is a bright red pimply rash on his neck, under his arms, or near the edges of his nappy or underwear when bub overheats in hot and humid weather. 

The rash often appears in folds of the skin and on parts of the body where clothing fits snugly, including the upper chest, neck, groin and armpits.

A few ways to treat heat rash 

• Avoid hot and humid environments. Move into an airy room or a shady spot and if your child is racing around, encourage some quiet time to reduce the amount of sweating. Try using a mini fan if you are out and about in a hot country or in the summer heat. If the weather stays hot at night, place a fan near your child's bed.
• Take off his clothes or dress him in cotton. Avoid synthetic fabrics, such as polyester and nylon, that trap heat; opt for natural fibres instead. Where possible loosen or remove his clothing and give him as much nappy-free time as you can
  
• Keep his skin cool. Cool the affected areas directly using cold, wet cloths, or give your baby a tepid bath or shower. Let the air dry his skin as much as possible rather than using towels; a little more nude time can help heal the rash
  

If you have anymore suggestions to prevent of deal with heat rash, please comment below so I can update this for all the parents who happen to stumble on this page looking for a solution. (I'm just dreaming here... As if anyone read this blog except me)

Busy =___+

This month will be busy one for Mango and I. It will be busy, busy, busy and busy. Wait... Did I mention that it was going to be busy? We have someone to visit us from the Institute of deaf and blind children and we have appointments for the dietitian, social worker, orthopaedic surgeon, OT, paediatrician, 3 early intervention programs to visit or meet them to see if we are eligible, more of OT, an age assessment and last but not least an MRI to end the month.

Im pumping with adrenaline! Not... =__+

What I thought I knew

Among conversations I always somehow get myself involved in is parenting. I would be in conversations like 'What kind of company will you put your child in?', 'Will you home school, private school or public school?', 'what type of sport will you teach your child?'.

Before Mango was born I knew exactly what type of mother I was going to be. I didn't know where my children were going to end up but I certainly knew what lessons I wanted to teach them and how I would teach them. I had heard (to my limited knowledge) everything I thought I needed to know about parenting and how the game works. So, by the time I was pregnant with mango I already knew how things were going to play out and how I would deal with EVERYTHING and anything. I had all the lists numbered down in my USB that I call Brain.  

Typical child

Teaching the word 'no' - check

Think before you speak - check

How to open mouth - check

How to chew - check

Dealing with tantrums - check

Dealing with bad habits - check

Being kind - check

To be loving - check

To be useful - check

How to help/increase vocab - check

How to speak - check

How to crawl - check

How to share - check

To look at someone when they are talking to you - check

To sit quietly - check

and well.... the list goes on. 

Except as you know now that this is not the way things played out. When mango was born all I had to throw the entire USB out the window and start fresh with what pretty much looked like this.

To teach Mango:

1. Teach Mango how to look at Mama and/or follow Mama from side to side - 6 months later.... check! YAY!!

DOING THE HAPPY DANCE

2. Teach him how to open his thumbs - 9 months on.... still getting there BUT when he does, I'll be doing the chicken dance. (no idea why) 

It suddenly isn't about what school I would put him in. It wasn't about what type of atmosphere I wanted him to be involved in (ofcourse I would put him in a good environment but that wasn't/isn't important right now, that time would come just not right now), it wasn't about the type of sport I pictured him playing. It was about would be ever be ABLE to go to school? Would he be able to see? Can he hear? Can he use his limbs? Wait. Hold on. Does he even know he has limbs? Will he one day be like what I had pictured? The worst of all questions I think about that every parents with special needs thinks even if they don't want to is 'How long will my baby live for..' 

I have a son with special needs. I do. He needs me. 24 hours a day 7 days a week right now and maybe for the rest of his life. It doesn't matter. As long as my heart beats I will look after him with what ever I have left. 

I have come to that stage where I can speak out and not feel that lump in my throat that my beautiful son, who is a miracle that he is even with us today is special needs. He is wonderful. He makes my world spin. He makes my day. To you he might just be another boy but to me - he is MY boy. My Mango.

Rabbit teeth

Mango has been teething this past week. His front two rabbit teeth are ripping out of his gums. He is also grinding. Everytime he grinds his teeth together its like someone is scratching their nails against a blackboard. That ear-piercing screech that makes your ears ache and fingers tingle.

You see, theres is a different between knowing (understanding) and knowing (from experience). They are both knowing, except one is limited and one is not. This week I went from knowing the cries of parents of teething children to KNOWING what those cries meant and where they came from. I fed Mango pureed sweet potato and he gripped the spoon with his teeth and wouldn't let me have the spoon back. I was pretty convinced that the half-of-the-spoon that was in his mouth was going to end up in the in a little plastic bag held by a surgeon working in the emergency department of a hospital looking at me in disbelief that he had just taken a half eaten spoon out of my son. Yes, I saw that all happen infront of me before I put my finger in his mouth and yank the spoon out before my finger was also going to be dinner. 

Mango is 9 months. His teeth are here and I happily say that this is probably the only milestone that he has reached on time. Why the teeth? WHY?! Every parent I have spoken to tells me how dreadful the teeth are and I had to get the teeth on time. Eeeehhh. I'll take it anyways. It's better than nothing. 

If I found Mango doing this..... I would not be surprised....