Moment of realisation

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

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

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

Mango's

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

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

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

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

=)  

Chromsomes

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

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

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

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

Example

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

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

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

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

Something like this:

Chromo 18.org

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

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

Thanks,
xx


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

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

Year 10 class

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

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

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

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

Update - Orthopaedic Surgeon

We had an appointment with the orthopaedic surgeon the other day. His assistant looked at Mango's feet and said they looked normal! He didn't really know what he was talking about obviously. The Dr said that what ever we did, Mango would still need surgery regardless of what we tried to do. Right?.... Wrong. Don't get me wrong. I'm very happy to be wrong in that situation.

The Dr came up to our table, looked at Mango's feet and he also said they looked 'normal'! As if his feet were never really vertical talus in the first place. He continued telling us that in his whole career he has never seen a vertical talus in his life that has fixed itself. By that point we didn't really know what to say. Subahanallah!

I do believe that my loved ones (which doesn't count as many) prayed for us everyday. We dreaded the day that they would tell us that our little Mango would need a surgery to correct his foot. In Mango case - with his chromosome disorder he can forget things. Forget things as if he has never done something before. Which means that if he started to roll a little bit, even on his side or kick and then he had an operation to correct his feet (which of course would have been for the better) - there is a very big chance that he could forget to use about using his legs all over again.... 

So Alhamdulilah... Glory be to Allah - The Most Great - The Most Compassionate. 

Yay!

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....

The Little Things

*RANT ALERT*

I looked around the room full of people. Mothers and children all around me. Everyone was laughing, children running around and all I could think of was if my baby will one day be able to those things...

Parents take so much for granted, the little things their children can do. I mean, I try and move earth beneath my feet so my son can take that first look at me and follow me. I totally understand that people mean well when they say 'he did it when he was ready' but somehow it still makes my blood boil. It makes me want to scream out that I have invested 24 hours and 7 days into trying to get him to look at me. I didn't spend 10 minutes of play time and suddenly he could look at me and follow me with his eyes. It wasn't that easy. 

Months, weeks, days - who knew how long I sat on our lounge floor talking, singing, playing him all day and night till he went to bed trying to get me to look at me and follow my face as I moved my head side to side. I bought so many toys to try and get him interested. I tried so hard to get him to LOOK at me. To LOOK at ME! 

My sister couldn't understand how I go to OT just so Mango can learn to stretch his thumb out and learn to grab things. One month at OT and I can see improvement,  He actually grabbed a toy today with his whole hand. I don't care if it was by accident or he knew what he was doing but that he opened all five fingers to grab that toy is what I was so happy about. Yes, it was only once but it was enough for me to do a happy dance and thank Allah for helping him do so. 

Who would have thought that opening all five fingers was so tough?...

Diagnosis, grieving and accepting

GOD always has something for you,

a key for every problem,

a light for every shadow,

a relief for every sorrow and

a plan for every tomorrow

Dear Mother and Father of a special needs child. It is nothing that you did or did not do that could have made this happen or is the reason that your child is special needs. It just was. 

From the moment Mango was born, I knew something was wrong. It was my maternal instinct that told me that something but I don't know what, was wrong. I used to tell my husband that Mango was sick or something but it just didn't feel right. He used to tell me that I was dreaming. 

Ofcourse, lo and behold 9 weeks later we received the diagnosis that our precious boy had a very rare chromosome disorder. So from then on... I always trust what my gut tells me.

{After diagnosis, the family goes through a whole process or recovery. It feels as though someone has shot you in the heart - your heart is aching, screaming in pain but just wont stop beating and suddenly the next thing you know your in a coma. Your awake but your body paralysed. At first you thing that maybe your dreaming and you can't understand why or what has just happened. You can't scream out and ask for help because the voice inside your head is screaming but your mouth isn't moving. }

From this moment on... everyone carries on with their lives, nothing about it has changed except that your paralysed and the only people suffering is you and the people that are closest to you. Well in my case.

Grieving. Then we finally learn and understand what has happened. How could this have happened? What did I do to deserve this? WHY did this happen? OH MY LORD!!!

Grieving can come in many different way depending on the person. I know for me personally I went in fight response and just turn all sensory and emotional feeling off and skipped right into doing something. Which ofcourse was o.k. for the time being. My problem? I never grieved. 

It's important for us to grieve. Those tears and sad words and cries for help. That all needs to come out. We need to go through falling down, curling up in a ball and crying before we are able to stand up, straighten our clothes out and stand tall. It's all part of the process. I hate to say it but I don't know if I can really get over this. 

Accepting. A friend once told me accepting doesn't mean that once you have accepted, you are not sad. To accept something you don't have to happy about it. You can still not be happy with it and who knows we might never be happy with it. It just means we accept and are ready to live with it in a different was than we have been. Not physically but more mentally. Our brains are still all mushy and squashed but it just means we can see a little bit, even a tiny winy bit clearer now. 

So my quest to get over grieving was a goal I was trying to reach for many months now. I can't say that it has been that easy and that it ever will be. I know now that my baby is the way he is. I would never change anything about him. I know that now. This is it and there is no wishing how thing were different but hoping that maybe this will start getting better.

He is who he is and I love him. I loved him from the moment we found out we were expecting. If he wasn't Mango, he wouldn't be mine. Not a day goes by that my heart doesn't ache from the hurt and pain I feel. The knowing of that my beautiful just so wonderful boy will ever have a normal life. Will ever be able to love and hold someone. To even KNOW that someone is there. To feel like he is not different but the SAME. I can't grasp the idea that Mango might one day realise the children around him are playing, running around, using their hands, talking and laughing, all these things that everyone takes for granted because they don't know how hard it is to 'move that hand, grab that toy or focus on that face' when these things are supposed to come naturally - and he can't do any of that. Will he ever feel INcluded rather than EXcluded. So my heart aches. I dont think that a day in my life will go by that it doesn't but now that I have grieved I see things differently. Yes, my heart is aching and screaming out   all week sometimes but I see things differently. I've cried all my tears till not one tear was left unshed and ached all my pains till the aching when numb. Then I finally stood up and told myself that it's over. That part is over. It's time to move on now. I don't know how but I will try. WE will try. 

 I see this as an opportunity. We will learn all our lives about how to do things. How to have more patience and how to love more and appreciate more. We will take this as an opportunity for learning. Well... We learn all our lives don't we?

P.S. So many parents have gotten to the end... If they can. WE can too.