The Angry Days!

12814271_973577726042587_8472857479915559711_nSo I will tell you how I feel today….utterly, totally pissed off!! You will have to excuse my language but there is no other word that defines my feelings in the same way. PISSED OFF!! PISSED OFF!! PISSED OFF!! If you are offended then I am sorry but my blog is not for you. I promised to be open and honest and that is what I am being. I am pissed off with the world! Pissed off with my situation!! But most of all I am Pissed off with myself. Here I am, sitting with the most beautiful little girl, who gives me nothing but sweet smiles and baby chatter, who lights up my life everyday and I am asking myself the question Why? Why me? Why us? Why my little girl? I often feel like I need to stand on top of a mountain peak and scream with every bit of oxygen in my lungs, ‘Why me? Why us?’   I think of all the people I know with children and ask why not them? Why not my best friend with her three perfect children? Vile aren’t I but I promised to be candid and that is exactly what I am being. I want other parents going through this to know that this is a normal reaction. Believe me I have researched enough parents blogs and stories to know. Still it does not make it any easier to feel this way. This is why I am angry with myself. Annie-Rose is just so god damn awesome in so many ways. She has enriched all of those lives of whom she has come into contact within the last 6 months. Everyone is besotted with her. My family even argue over whose turn it is to hold her, cuddle her, play with her…including myself. Yet I cannot help but wish that she had the normal amount of chromosomes.

 

When I question why? I try to look beneath the why? I try to ask myself why it matters and honestly I cannot comprehend why it actually bothers me so much. For every reason I can give, I always have a rational logical argument against the reason.

 

Society can be cruel……………………Society can be cruel regardless of whether you have a special need or not.

 

She won’t fit in……………………………Why should she fit in? I am not one who actually likes to fit in anyway so what does it matter. I have taught my son Jamie to be himself and to relish his differences. To wear the clothes he likes, not the clothes he needs in order to conform to society. Jamie loves to dance, whilst his friends at school love football.  Jamie is himself through and through regardless of society and its expectations. So why is it important that Annie-Rose fits in. Why is it such as issue?

 

What If people are nasty to her?…………..We all have people being nasty to us at some point at others in our lives. I just need to teach her the skills she needs to cope with these situations.

 

What if she is bullied because of her disability? ………… bullies do not actually discriminate. A bully can always find a reason to pick on someone as it is not anything to do with the victim  but how the bully feels about themselves.

 

Will Annie-Rose ever get married, have a family?…………She may, she may not but that is true for any person, not just someone with Down Syndrome.

 

I could go on and on with this list but there is no need. The point I am making is that I have always got a logical answer to any thought I may have in regards to Annie-Rose and her future. So why do I feel so angry. It just does not make sense.  I have read that when we have a child with Down Syndrome we have to grieve for the child that we imagined. I suppose this could be right. Imagination is a powerful tool us humans have. We use it everyday without knowing. I just wish that these feelings would subside. Don’t get me wrong it’s not something I struggle with Daily. I can go a week or so before these feelings take root again. I have days when I thank god for Annie-Roses extra chromosome as I know without it she would not be her. She brings so much joy to my life and makes me want to stand on top of that mountain peak i mentioned, filled with pride.  Every little milestone she smashes makes me want to stand on top of that mountain, ‘shouting she did it! She did!’. The proudest mom in the world.

 

Here’s to hoping that the Angry days get less and less as time goes by and that I will one day accept Annie-Rose’s extra chromosome completely and be on that mountain, feeling free and happy, feeling the wind in my hair and thanking god for everything that life has thrown at us along our journey.

 

Here’s to hoping xx

 

Lots of Love,
From one Pissed off but grateful Mommy to Another xxxx

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Conception and Beyond……..

I am sat here trying to write down my feelings to share with you, constantly writing, then deleting, unsure how to put anything into words. When I am going about my daily business the words and thoughts just flow. I literally write a book in my head whilst I am washing bottles or hoovering the living room but actually trying to write this down for others to read is a near impossible task. A blank page. Please bare with me.
Deep down when pregnant I always knew there was something wrong. Call it a premonition, an instinct, a feeling….I just knew. Something just did not feel right. I knew my Annie-Rose was conceived within minutes of doing the dirty deed. I remember turning to my partner saying ‘you have just got me pregnant’. He looked at me like I had gone mad. It was just one time of not using contraception since coming off the pill and I knew that his little tadpoles had raced to my egg and that the process had started. I remember taking pregnancy tests within a week. My family thought that I was mad. My sister kept laughing at me, when I kept purchasing more each time a negative test appeared. About 3 weeks later I was proved right. Two bright blue positive lines told me I was expecting. From that moment on I knew I was expecting a girl and that she would have Down Syndrome.

I remember confiding to my mom and my best friend Emma about my concerns. I swear they thought I was as mad as a march hare, anxious, scared and probably irrational but I just knew. At my first Midwife appointment I was offered the screening that looks for the probability of having a Down Syndrome child. I agreed to these tests but left the surgery with a heavy heart. 10 years ago when I was pregnant with my son I refused these tests. I knew i did not need them. I knew that he would be fine but this time I had a nagging feeling that this pregnancy was different. After leaving the Doctors I went to my moms and discussed these tests with her. I explained how uneasy I felt and that I didn’t know why I had agreed to the Down Syndrome screening. She asked me the question that i needed to be asked. She said ‘If it turns out that this baby has Down Syndrome would you consider a termination. My reply ‘No way!!!!’. This is not to say that I am against abortion. I’m a strong believer that each person should be allowed to make their own choices dependent on their own situation. I just knew that being the emotional thinker I am, an abortion would haunt me for the rest of my days. I would love my baby regardless of any disabilities and If my intuition was right, then it would be so by the grace of god. Please understand I am not in anyway a religious person but I do believe that everything in life happens for a reason………

My pregnancy was not the easiest or pregnancies nor was it the worst in comparison to others. The only way I can describe how I felt was that I felt ‘yukky’. Great description…Not!! but I really cannot think of another word for it. I had severe heartburn day and night. Lots of water infections. Episodes of light bleeding. Fatigue and just an overwhelming feeling that something was not right.  I was bigger than I should of been at each stage in my pregnancy. I had extra scans due to being on Anti-depressants but there were not any concerns mentioned, except for my little girl having short legs during scan measurements. I did not know at the time that this was a pointer of Down Syndrome. My consultant wasnt concerned especially when I described my partner as a ‘short arse’. There was another occasion during a scan when the sonographer seemed concerned and dissapeared out of the room for 5 minutes but when he came back into the room he told me everything was fine. I didnt question it. They know what they are doing…dont they??

My pregnancy continued much the same but I started to lose mucus (The Plug) at about 28 weeks. I felt that there was water leaking but on telling my midwife at an appointment she told me to ‘just cross my legs’. I thought maybe the little one was sitting comfortably on my bladder causing incontinence.  Little did I realise that this was the amniotic fluid leaking. Apparently a sign of carrying a child with Down Syndrome is carrying extra fluid. That is why everyone queried the size of my belly and I was asked whether I was having twins on more than one occasion. Looking back despite me refusing the Down Syndrome screening there were other factors that health professionals could of picked up on along the way. Do I blame them for not telling me? No. I chose not to have the test, so even if they ever had any idea what was too come, I am not sure it would of been ethical to tell me.

 

My Midwife made me an appointment for about 36 weeks gestation and I remember telling her, you can book it but I will have had my baby then. Just call me the psychic Mom. I just knew I would not go full term.  I was meant to be going on holiday for a week on the 14th September. It was all booked and payed for. It was our last holiday with my little family before our new arrival. My son had been an only child for 9 years and I really wanted to build some lasting memories for him before everything changed. It was not meant to be. On Friday 11th September I went to the triage at our local hospital to get checked out. I had lost a little blood and some more plug and wanted to be reassured that everything would be OK before I went on holiday. I was only at the hospital a couple of hours. My babies heartbeat was monitored and a swab was taken. I was told according to the results everything was fine and that I would not go into labour in the next two weeks. Apparently your body secretes a hormone when you are close to giving birth and mine wasn’t. I went home and spent the rest of the weekend packing.

 

I still didn’t feel right by Sunday, so I decided to go to Triage again Sunday morning. Id lost a little more of the plug and had this nagging voice in my head telling me to get checked. My partner was at work, so me and my son went to Maccy D’s and then to the hospital. I hoped that they would put my mind at rest once again. If only!!  I was hooked up to the monitors to check my little madams heartbeat. I didn’t realise at the time but her heartbeat kept dropping. She seemed a little in distress. I was sent to the delivery suite where they continued to monitor us. The midwives kept asking me if there was someone to come and fetch my son. I still did not realise the seriousness of the situation. I just thought it was because I had been placed on the delivery suite and children were not allowed. I phoned my partner, my Mom and my my best friend just to keep them informed. My partner came to pick up my son and my friend came to keep me company. I didn’t ask my partner to stay as I really didn’t see the the point. I honestly must of been in some kind of denial or shock. All I kept doing was crying about the holiday I was meant to be going on. I felt like an absolutely rubbish terrible mom as the chance of us going on holiday seemed like a distant memory. I was scrubbed for theatre as a precaution but the seriousness of what was happening just didn’t enter my mind. I was 31 1/2 weeks pregnant, scrubbed ready for theatre, on nil by mouth and all I could think about was our holiday and letting my gorgeous son down.

What happened next happened so quickly. Me and my friend are chatting. The monitors start to bleep. Midwives and doctors rush around my bedside. I’m having contractions and an oxygen mask is put on my face. My partner Ty and son Jamie walk into the room and I start to panic and fight as I do not want my son to see me like this. According to Emma my little girl was in distress and her heartbeat had been down for longer that 5 minutes and she was crashing. My friend honestly thought that she had died. Its ironic but my son seeing me in that state is what actually saved his little sisters life. Apparently when I started thrashing around in panic at my son seeing me, my little girls heart beat returned to normal. I was whipped in for a C section and within half an hour Annie-Rose was born and I was in recovery. She was in distress due to her having a very short ambillical cord and a lot of amniotic fluid to swim around in. Again another sign of Down Syndrome that was not picked up on.

 

Little Annie-Rose was born on the 13th September, 8 and 1/2 weeks early, weighing 4lb 2oz.

We never did get chance to go on our holiday………