Beating half term/fall break

It's half term! It is day two of half term.  I can’t explain how much I have been stressing about this school break.  We usually pack our bags and go to my parents so I can get some rest and the children can have company with their uncles and aunts and cousins being around. However, my family have gone away and so I have had to stay home with both my children.  It isn’t that I have never stayed home with them previously, it’s just with my chronic pain issues, I have limited energy and patience to entertain them now.  I try to avoid all the messy play as it includes a lot of tidying which my children completely avoid regardless of me screaming like Tarzan to get them to clean up.

I have been trying to mentally prepare myself for this break because let’s admit it? Children need entertainment.  And so the past few days I have been letting my children make a mess (I was in OCD heart failure can I just say) and explore their skills and well, you know, also make a mess but I’ve been really patient and I haven’t let the lioness within me wake up.  You see, my children LOVE playing with absolutely everything and I never deny them their right to be as creative as they want to be.  There are times I’m cringing and I know I will most likely have to clean up after them because it takes up more energy to literally beg them to do anything.  My 4 year old son has a way of making me feel like I’m at fault for his mess? He has a tactful way of saying, “mummy you will have to help me too”.  Yes, that’s right my four old has a way of making me do the work.  Do not get me wrong, they really don’t get away with much at home.  I am that mother that can listen to my children cry for hours and not give in to their demands but sometimes, my children just ignore me.  They completely blank out my emotional speeches regarding caring and sharing and helping.  My four year old just walks off really.  I do get offended but I pretend I haven’t taken it to heart.  Then there are days I’m trying give a motivational speech but I can feel my jaws hurt from all that fake laughing and my throat hurts from the way I’m trying to deliver this oh-so-heartfelt speech.  I cringe inside really because I can’t believe it has come to this? I’m sure other mums can relate. Truly you have my sympathy!

I wrote a blog post about Aleena last week and I mentioned how there is another side to this life with Aleena and to Aleena herself.  She very conveniently brings out toys which she rarely plays with for 10 minutes.  Her concentration on one activity doesn’t last long and the most frustrating part is, she casually leaves the activity saying, “I’m really tired mum, my legs hurt”.  How funny that her legs didn’t hurt when she was sprinting around the whole room on her tippy toes dancing just a few minutes ago but sitting down and playing has tired her out? So, during those times the lioness within me does make an entrance and we all know what happens when a mother turns into a lioness – God save the neighbours because even their ears will hurt!

And so I have been really worrying how I will let my children walk all over me while I try to keep my home together.  I’ve had OCD since I was a child and usually my habits changed depending on the circumstances and situation during those years.  However I have always been a meticulous person and as years have gone on some habits have remained with me.  Yes, I love my home to stay in order and have a place for everything but I do sometimes slow down and allow myself to breathe in the chaos.  I absolutely love for my children to draw, colour, build things with Lego’s but I avoid things like gluing and sticking, and play doh - the bane of every mother’s life who has a home that is carpeted (although after years of pain I realised cleaning the doh up after it has dried saves a lot of struggle).

Our first day, I prepared my children for a surprise with a rather palpitating heart I must say.  I decided that I will let them do a collage.  Aleena loves collage and Isam has not really done any so I felt generous and took out my beautiful shiny and glittery (I really hate glitter but I didn’t as a child) scrap papers and cut them into small pieces.  I took out the children’s scissors too and arranged the table for them and called them into the dining room.  Their little faces were full of smiles and their voices were so exciting and they were giggling and thanking me.  I actually didn’t bother wrapping them up in cellophane can you believe? I joke.  However if anyone follows me on Instagram or Facebook you will see how I wrap my children while they even eat ice cream – that’s how I help the environment by saving a load of clothes to wash.

We had a great few hours and I was able to leave them in between to complete a few chores around the house because clothes do not wash themselves and dishes do not dry themselves and anyone that says to live a little, well I prefer not having to cram in a million chores when I can plan my time and have lots of time to spend with my children.

After they completed the task they were so eager to help me clean up and so I announced in excitement that they can have a play doh session the next day (I should have waited on that because children do not forget promises but they forget the ones they make everyday).  I realised that they were both so content and proceeded on to helping me clear up all the mess and they finished their lunch nicely (I will ignore the mess Aleena makes when she even eats a lolly) and even watched a movie in peace while I ironed and watched with them.  They didn’t kill each other all day however I will ignore the fact that Isam's slight touch did make Aleena go, “ooowwwww”, a few times.  That’s just a done deal and she’s got into the habit of doing this which is annoying and then other times Isam could be treading all over her and she will be giggling and encouraging him – I am still trying to figure this out myself but I suppose some days they are just typical siblings at war.

We really enjoyed making masks the first day and it just made me realise that allowing such pleasures now and then isn’t so painful.  The clearing up is not so bad and I myself studied Art & Design for A'level and they were the most enjoyable years. I will minus the stress out of the equation but those years I was a stressed out teenager/young adult and so I loved getting myself busy and learning various art mediums/media.  My favourite was screen printing.  It was amazing to see the stencils I created come to life.  There was a certain satisfaction and joy in seeing your work come to life.

We had our play doh day today and it was a disaster.  I think I secretly threw out some of the play doh tools a while back and so I had to actually show them how to manually make things (we had plasticine in our days so these children have no idea what real kneading and moulding is).  Again, I let them get on with it.  I closed my eyes and pretended I can only see the good things so it wasn’t so bad and I’ve even gone and promised them some play doh tools if they have a good week.  I’ll have to remind myself to not store them in the wheelie bin where it gets collected every week.

I’ve noticed a great change in them in the past two days.  The more I nag them to do things and to complete their little chores the more they fight to not do it.  The more I tell them that they HAVE to clear up their mess, the more my son especially pretends he can’t hear me. It has made me realise that maybe we haven’t had some relaxing time in a long time.  They have picked up on my stress and daily battles with my chronic pain.  They’ve seen me literally lay around in pain and cry even when I try to avoid these situations but some days it is unavoidable.  Life does get in the way.  I probably haven’t let them do some messy play for a long time because of the fear that I’ll have to pick up the mess.  Truthfully, I haven’t been a confident mother and I’ve lost myself somewhere in the past two years. Appointments and daily life has taken a front seat and I’ve been trying to manage all that on top of everything else.  We always make sure we leave the weekends to go out to the library, visiting family or taking them out to eat but I rarely let them do messy play like gluing and sticking and painting and so I hope I can continue this now that I have faced my fears and realised, it isn’t so bad.  That things will fall into place if I am calm and less stressed and so far the past two days have been great.

We hope to do more creative things tomorrow as I have saved some yoghurt pots (I’m going all out, I know ha!) and I have been browsing through Pinterest for ideas.  My children will go back to school and tell all their friends what an amazing break they had hopefully and I will feel satisfied that for once I was a fun mother after a long time.  We have our share of happy days but lately they have been lacking but I hope we have plenty more of happy moments to come in the future and my chronic painful days will be a distant memory for my children and I.  The four of us deserve to have some happy times in our lives.  It has been limited in the past two years but here’s to happier days to come and surviving parenthood and if I do not write another blog post regarding positive school breaks, I’ve either eaten my words up or I’ve drowned in all our artwork!

Enjoy some pictures of my children's work.

 The above are my birthday cakes as I turn a year older on Friday.

An update into Aleena's journey....

Yesterday we had a meeting at Aleena's school where we discussed a lot of things like her progress and what we are expecting when she actually finishes her time at the special school. There’s a long while left until we get to that day but still they wanted to see what our aspirations are for Aleena.  Usually, when I attend these meetings we all become a little teary and emotional at her achievements and how far she’s come from the day she started at the school.  However for me, I feel so proud of Aleena's smallest of milestones because I know how far she’s come from the day she was born. Yesterday however the teacher started crying when discussing Aleena's kind and caring nature and we both cried together.  She’s a precious little girl and I’m definitely not biased as a mother because anyone who comes across Aleena will instantly notice her kind and unselfish character but also a very humorous side to her.

At school she is progressing so well on her targets but as a little human she’s developing such a beautiful and empathetic character that everyone loves.  She’s selfless in her support towards her peers who are developmentally behind and she’s always motivating them and cheering them on as her teachers say.  If she realises one of her peers are upset or poorly, she will go out of her way to support them in the way she can.  There are days she comes home and will tell me how one of her bus friend's or school friend's have been poorly and will feel really concerned and anxious for them and this goes for her teachers too.  She loves bringing home ‘star of the day' awards and at school she eagerly awaits them but if one of her friend receives the award instead, she’s just as happy and she will scream their name in excitement.

I’m not surprised at all because she reflects all these qualities wherever she is.  She’s full of love and support for all the people around her. She is like a little mother hen to her brother who also will go to Aleena when he’s in trouble and hold onto her and cry.  Aleena's life isn’t about the superficial and material goods, she really thrives on love.  Just one little kiss or hug from her brother brings her so much joy and she'll scream in excitement saying, “mummy I think Isam loves me a lot. What do you think? Look he gave me a kiss. He’s such a cutie pie”.  I love seeing this part of the bond between the two because it really brings out the joy on her face.  All she wants is love and acceptance and this isn’t always easy when you are developmentally behind and cannot keep up with your peers physically and mentally.

I say mentally but I do not mean it as intelligence level.  Aleena is extremely intelligent and bright, that we know of. However, Aleena perceives the world in a very black and white way.  She’s isn’t into what today’s 9 year olds are interested in.  She feels everyone is similar and sometimes doesn’t realise that people are taking advantage of her sweet nature where she will share everything just to be accepted into the fold of friendship.  I observe from afar and I can easily just intervene but it always intrigues me how far Aleena will go just to be acknowledged as an equal.  She will give up her tablet time so someone else will feel very pleased with her (she does the same with her brother). Sometimes as a mother, I feel my heart breaking into tiny pieces.  I find it hard when she feels rejected by children or she doesn’t quite understand what they are playing hence automatically she feels isolated.  This is when the realisation hits me that my child indeed is starting to feel different and is asking me questions on why other children do not want to play with her.

We have found her crying a few times on her own because all she wants is to play with other children.  As a mother, this is such a difficult journey and challenging for me to answer her questions.  I don’t want to tell her she is slightly different in terms of her needs and developments but I also want her to understand that situations like these will arise and I want to prepare her and make her resilient and independent.  I could easily cover her with my love and affection but I don’t want to turn her vulnerable and hence we are finding ways to explain to her what to do during these situations.

Aleena finds these rules maybe too rigid because she is just a soft and warm person that wants to offer everyone her friendship and love but as a mother, I have to teach her to stand up for herself and identify when other children are not welcoming her and even being rude to her.  She also attends mainstream setting once a week which we are hoping builds her confidence but also makes her understand that we are all different and it is OK to be different.

Aside from her kind side, Aleena is probably one of the most humorous little people I’ve come across.  She will sometimes say something and laugh at herself and say, “it's so hilarious mummy” or “I’m so hilarious mummy”.  A few weeks ago she went into a chip shop and asked a lady at the queue, “why are you here?” and the lady replied saying she wanted chips and Aleena proceeded to ask, “do you not cook at home?”.  It may not sound so humorous but Aleena uses a very sweet inquisitive tone to ask questions.  The lady laughed and up to this day, every time I think of it, I laugh on my own.

Another example is when she noticed one of her teacher was expecting and she casually went up to her and said, “you’re going to need to buy a cot soon won’t you?”.  The teacher was so surprised and said she couldn’t stop laughing about it later and even asked Aleena to help her make a list of what the baby will need.

This is our Aleena.  Full of sunshine and rainbows like the unicorn or ‘nunicorn' as she calls it.  If ever anyone is having a bad day, Aleena is sure to brighten up their day and bring a bit of happiness and laughter into their lives.  When some family members are feeling sad, they love having a hug from Aleena and they know she will comfort them and make them happy.  In a quiet room, Aleena will fill it with her belly laugh and loud giggles. Does she ever get sad? Yes she does but very rarely.  Life for her is fun even if that is just visiting Cardiff which she LOVES or her Aunty’s house around the corner.  If we have visitors, she’s so excited and will want to know if they will eat dinner at ours as it means they’ll sit longer.  This is my beautiful little girl.

I love that she can go to a school where she let’s down her guard and enjoys being there everyday.  I love going into these meetings knowing that I’ll always hear Aleena is a happy and confident child in that setting.  I’m so glad that Aleena goes to a place where she can be who she is in her full glory without having anyone take her for granted.

We are blessed to have Aleena as she has taught us to be patient and kind to people.  It isn’t an easy ride being her parents as there is another side to this beautiful journey but I’d rather concentrate on the positive and happy side. I am glad that we have had this opportunity to start this journey of parenthood with Aleena.  We are excited to see how she develops into a teenager and then to an adult and we are hoping the ride gets a bit easier for her health wise and remains stable as it has been for a few years.

A collection of Aleena's stickers she brings home from school.  She proudly sticks them on my wardrobe.

Mental Health Awareness Week

I have been away from my blog for quite a long time now and I just haven’t known what to write about. I feel like I don’t want to speak about the negative things in my life and I want people who are waiting to have a transplant to come here and take away some hope.

This week has been mental health awareness week. I’m about to write a personal blog about my situation and how I’ve been fighting with myself to keep on going for the sake of my children and my family.

If you saw me from the outside, I come across as a calm and content person. I always have Aleena’s teachers telling me how calm I am. If only they knew the tumultuous feelings I go through everyday in order to keep the chaos at bay and to carry on as best as I can. I would say the last few years have been really tough for me but when I look back at myself as a child, I have always had feelings of fear, isolation and anxiety in my life. As a child I have always loved being around my large family and I think everyone knows me as the girl-that-cried if anyone left our house too early or didn’t sit until it was time to eat. I always wanted a large gathering and I hated the sound of peace. Here I am, living somewhere that I have very little family and hardly any friends. Some days are really hard and I try to accept my situation but some days I just want to switch off and not think about the isolation I face everyday.  Today was one of those days. My health is letting me down to the point where I feel like I am becoming a burden to my family and this negative person that I hate being. I can’t put my pain aside because physically it takes my breath away. I have been living on macaroni for so many months now and just the thought of eating another meal of macaroni makes me want to not eat. But deeper than that are my other worries. Aleena is getting bigger and I am getting weaker. I feel like I can’t keep up with Aleena some days. My son, he doesn’t want to learn any form of independence because he sees that his sister gets a lot of physical support so he expects the same for himself too. It is really hard to explain to a 4 year old the difference in his and his sister’s circumstances.  He’s started school so now we have homework to complete and I have another set of letters to read, more dates to remember and more energy to put into everything.  The energy that I do not have currently.

As a child, I’ve always wanted to live on a long street with all the houses filled with my siblings and uncles and aunts and cousins. That was one of my biggest dream to have everyone near me and close to me and for us all to have fun everyday.  Now I am 36 years old and you know what? I still want this! I wish I had my own family members near me for the love and support. I wish the days where I couldn’t hold onto my emotions that I could run to one of my cousin or sibling and bury myself in their embrace.  But I have to deal with a lot on my own along with my husband. We find it tough most days with both our children.  Our days don’t always seem fun filled as most days I’m unwell and I want to be away from the children so they will not see me in pain crying. Some days I have to pretend the pain isn't there when I have no choice but to be a mother.

It wasn’t like this. I fought to stay happy when Aleena was born. I rarely felt broken even during those nights that we were sleep deprived and this wasn’t just the usual sleep deprivation that parents go through.  Aleena wouldn’t sleep after 2am and cried all night and never had naps. But we survived those days and we have done great. However with my health declining, nothing feels perfect anymore. I miss the years before I fell unwell and our life came to a standstill. They were the best days!

I wish I was that person that can hold onto someone and cry and let out my feelings.  I wish I could stop thinking that it is OK to not smile everyday and it is OK not to be OK. It is OK to cry to someone and speak about all the worries inside me.  I am learning slowly and I have accepted that I do suffer from depression and everyday I am trying to overcome these feelings. We have finally had funding to send Aleena to respite where she will spend a few hours a week where she will do fun things and I can take a bit of a break and work with Isam but also spend some time with him.  I’ve gone for counselling however it didn’t work out for me but my main problem is my current situation with chronic pain.  I think I will soon get some answers to resolve this situation and I hope my life will change for the better.

One day hopefully these horrible days will be over and there will be brighter days in my life and I will be that happy mother again who will be active and patient.

If you know someone around you that has a lot of responsibilities and you know they are going through hardship, please offer them help.  Offer them a break because they may not exhibit the signs of depression or anxiety easily. They might be like me, good at just getting on with things but could do with a break.  People that go through depression or other mental health illnesses never ask for help.  We always feel we are burdening people with our worries and also boring them with our never ending sadness. Mental health problems can suddenly creep up on us and leave us feeling lonely even in a room full of people.

I just hope there will be more help and support our there for people and more knowledge to help people.  It is hard getting counselling sessions and once you get them, you are put on a timer to express your feelings.  This is something that put me off counselling as I felt rushed and I could never talk about my worries without worrying that my time will be up.

There really needs to be some more support and help for people where it is accessible easily and I hope as time goes on, mental health will be viewed as an important subject like many other illnesses without any stigma attached to it. Let’s hope for a better future and brighter one for everyone struggling with mental health problems.