I've got you darling

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

Just like brothers, Plum has his back. 

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

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

My little boys. Gosh, I love nappy bottoms. 

8 things to never say to a special needs parent

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

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

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


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

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

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

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

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


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


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

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

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

Reminder - I am important too

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

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

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

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

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

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

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

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

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

We are important too. 

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

Most of all - this is a reminder for me. 

______________________________________________________

Dear Me,

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

From Me.

Chromosome 18 (Distal 18q-) - PART TWO

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

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

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

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

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

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


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

Our little Mango has officially turned 2! Two years of so much struggles for a little boy not even big enough for his age. He really is a little trooper. While we all sang happy birthday to Mango, I couldn't help but look around at everyone and realise what a good feeling it was to see how much Mango was loved. To see that he is who he is and no matter what that was, everyone loved him. Everyone loved him for no other reason than him. His smile contagious and his laugh just so adorable. You can't help but suddenly feel the need to laugh. 

A two year old boy who has changed so many lives in our path in life but most of all he has changed the people around him into better people. How much we have grown together and see the world in such a different view. I used to pray for a child who would change hearts, except I never realised till now that My prayers were given to me. For so long I have seen myself as taking this path on my own, by myself with noone but me. Now I realise I have been pushing the people that care most away. To try and protect Mango from nothing but my fear of people falling out of love with him. How could they though? Just by looking at him- your heart swells with love for him. Im being bias, I know. 

In saying all that, I want to take this time to thank all my family and friends for everything they have done. I want to thank you for being there for us when we needed you. Thank you for being there when we didn't ask you to be there but you still came to show your support. Thank you for listening and sharing our worries with us. Thank you for worrying when we worry, for being happy when we are happy, for crying when we cry and most of all - loving our boys just the way they are and for nothing more or less. 

We always miss the opportunity to stop and tell you how much it means to us that you are a part of our lives and riding along this journey with us. To see the love and support you give us. We love you for that.




 

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...