Reminder - I am important too

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

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

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

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

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

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

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

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

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

We are important too. 

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

Most of all - this is a reminder for me. 

______________________________________________________

Dear Me,

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

From Me.

Chromosome 18 (Distal 18q-) - PART TWO

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

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

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

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

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

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


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

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. 

Dr A - prediction for the future

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

Eeeeerrrrmmmmm....

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

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

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

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

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

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

Parents

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

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

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

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

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

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

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

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

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

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

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

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!

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)

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....

ehh...

I had a few friends over the other night. Put my little munchkin to bed and made sure he was drunk with milk that he couldn't even keep his eyes open to finish the bottle. I ordered a pizza and everyone else made dessert. Sat down all together, let the kids run wild while we sat in at the dinning table (where by the way many great conversations have taken place) and we chatted away till even the mice couldn't stay awake.

Chit. Chat. Chit. Chat and I was telling everyone about my terrible history with the paediatric orthoptist at the hospital when I realised that I was reopening a wound that hadn't even healed yet. It felt like I was scratching at a scab and unfortunately I had successfully peeled that dried layer of blood off and I before I knew it, i had started to bleed. I broke into a million pieces without being warned.

I felt hopeless. That very moment I felt like I couldn't go on. I couldn't do it anymore. It was the last straw that I had to give and someone had taken it from me. I felt like my lungs were being squeezed and my heart was about to come out of my chest any moment. I broke. I broke and all the strength that I used to keep myself together was yelling it. That week I was also suffering from a sore throat and was croaking. So imagine  runny nose, puffed eyes and red face make a nice crying picture... except when you turn the sound on and all you hear is a frog croaking uncontrollably as if cheering for the footy.

After a few minutes of what seemed like a fight to get myself together and stop croaking uncontrollably. I felt like all my armour had been shined although dented everywhere, I was ready to begin again. Which also, brought me to the the thought "hold on. I have no voice. I actually have NO voice. How am I supposed to be my son's voice and be serious when everyone around me was to busy laughing at my croak instead of concentrating on my words." So I did the inevitable.  I drank an asian remedy for a sore throat. Pear, lots of blended ginger and lemon. Hold it! As much as colourful rainbow that might sound, it is really rather-stick-your-finger-in-your-mouth-and-vomit-because-that-taste-is-enough-to-kill disgusting. No lie. Try it if you don't believe me. Before you do though, let me know and I would like to see your face as you do it. =)

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. 

Not Alone (still trying to believe everyday)

After several months of doing it alone, with no one I knew who were going through the same things my family was going through, I finally pulled my socks up, took my courage and gave it a good shake. I needed to find people, HUMANS!!! I wanted to find people with experience. It didn't matter if the child had the same chromosome disorder, a different one or didnt have any chromosome disorder just a small delay. I didn't care. I just wanted to meet special needs parents and listen to their special needs experience. I felt so helpless. 

How is it that I sit around all day, praying and exercising Mango so he can learn to look at things, lift his head up and bring his hands to his mouth and yet after months he still cant do it.

Back to the point, that is a totally different post. I finally signed up for the Unique support group. I found play groups for special need parents and what ever else I could find. I was desperate even if it meant I had to go door knocking. 

UNIQUE is a support group for special needs parents with children or family who have rare chromosome disorders. They were so wonderful. We emailed back and forth and then I joined their facebook network cafe (closed group). There, I didn't meet parents who had the same disorder as my son but I met parents going through the exact same thing I was going through. From sleepless nights to hypotonia and feeding issues. Everyone, regardless of race, religion, country or colour we were all united but one thing... our loved ones needs. Parents with adult children who have been diagnosed and new parents who jut found out early or late. 

So for all parents out there whose children are special needs.. mild or severe, you are not alone. You might feel alone, like I did and I sometimes still do but your not. There are people out there, maybe worse or maybe not so severe at all but We are all united by one thing. Our UNIQUE children.  

Mango and Eczema

Over the past few weeks Mango has been having a sever case of eczema. In the beginning I thought that it was just heat rash. But it starting to peel and scar up and we haven't even been in the sun! So sunburn was out of the question. His face, ears, chest, belly, legs, feet and arms all were covered in red rash. Poor little one. He would rub his face into my chest as if he were to try and dig a hole with his face. My friend's bub has eczema and she bought me QV bath oil and Dermaveen lotion for eczema.

I took Mango to the GP and she her eyes nearly popped out. She gave me some steroid cream (not strong ofcourse 1%) and she told me to go home and put it on him straight away. 

After a few days of using the steroid cream it has become so much better so i'm back to just using the QV and Dermaveen. Well anyways, one thing I learnt from a friend was to wash him with oats. So When ever I gave him a quick bath under the sink, I would put some outs into an old stocking and rub it all over his body. Surprisingly he came out of that bath much more calmer and lets red. It works. 

Overall... Eczema sucks. Anyone have any other tips they would like to share? I would love to know. One lady came to me and told me to try and use Devondale butter. As in Devondale margarine. I haven't tried it yet...