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?

midnight giggles

I think one of the main reasons I sleep late at night is because of my endless 'to do' list. I have so many things to do, I just don't know when to stop. Prioritise my list from most important to least important you say? It's all just as important. My bedtime is usually after 12am in the morning but for good reason.

Every night, at 12 am on the dot. I wake my little Mango up to change his nappy. If I don't , then I will most likely have a lot of sheets to change in the morning when I wake up. I would rather loose a little sleep and have more time to sleep in.

It's one of the best moments Daddy and I look forward to at night. We get all excited like little kids giggling and smiling from ear to ear because seeing mango sleep and try to ignore all the movement that I make to change his nappy, just happens to be the cutest thing in the world. It really is. If Daddy goes to sleep early, I wake him up because he hates missing this moment with mango. It's one of the moments we truly get to appreciate how perfect he is. His perfect eyes. His perfect nose. His perfect way of sucking his favorite dummy. His perfect hands that can't stop clenching even if he tried. His perfect hair. Everything that makes him perfect without all the spasticity in it. He is wholely prefect.

So everyday, I give up a little bit of sleep to have 15 minutes of precious time with mango. While I get to cuddle him and he snuggles down into my chest. Just the thought if it is making my heart swell with love and giggle with excitement.

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.

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.

=)  

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...

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....

We want to be heard

Hello all! So I've been looking around for some inspiration. I found lots but one thing in particular that I happened to stumble across was a comment from a mother trying to get her a special needs bed for her daughter and the government/hospital or who ever the staff was, gave her a hard time about getting it and called her a bad mother.

My blood is boiling slowly for this dear mother. Let me start off by saying that this behaviour from professional staff is absolute disgusting. How dare someone call a mother bad. A parents of a special needs child is a warrior. When we request, we request not for us but for our children.

We don't spend most of our days in hospitals, whether its for an appointment or an emergency for our own well being. We do it for ours kids. We sacrifice our time making sure our little ones have everything they need and everything that makes them comfortable.

I'm not saying that we are better than other parents. I know for a fact that all parents do their best for their kids. Special needs children just need that extra care, extra time and the extra effort. So while mothers take their children to gym so they can learn how climb a ladder or jump on a trampoline, we take our children to Physio therapy or OT so they can learn that they have muscles, hands and feet and that we use these to touch or hold.

So back to the point about the mother fighting for her child to have a secure bed a night. How could someone call a mother who had spent more time taking care of her baby and requesting something for her own child's safety be seen as a bad mother. I just don't get it. 

I understand that feeling very similar to the look that a few doctors gave me when I was asking them a questions about Mango as if to think I was overreacting. Yes, I understand I am a first time mum but I do have experience. I had the honour of baby sitting a lot for my sister and I got to know those children pretty damn well. I knew the look they had when they were sick or upto something and so on. Same thing with my son, except that its easier because I have that mother instinct that god has given me in my gut to send me messages on things that I should probably do for him.

I might not have all the experience in the world but the thing is I'm not claiming too. We mothers parents just appreciate being listened to and understood nicely, instead of thinking that we are just over reacting or paranoid. Am I not right?

Well... That was a bit of a rant in the end. Thanks for finishing though. Xxx

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!

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)