Tag: ds

Posted in days out, life after loss, motherhood, mothering a rainbow, mummy blog, North Wales, parenting, parenting after loss, Uncategorized, Wales, Welsh Mountain Zoo, Zoo

Welsh Mountain Zoo

Posted on by Amy

Whilst on holiday we chose to visit the Welsh Mountain Zoo in Conwy. The drive from Pensarn was easy along the A55 towards Llandudno the only problem we had was that the SATNAV took us to a private estate without the zoo grounds so we had to follow the signs to find the entrance, I must add this was really easy as the signs were clear.

We had ordered our tickets online the night before as they were slightly cheaper, 5% I think. I am glad we did because the kiosk to pay is on the way the car park which we hadn’t anticipated and meant I had to try and find the code on my emails whilst still in the car. I found this a very unusual way of paying as for me the kiosk was on the passenger side and I was lucky Hubby was in the car to talk to the member of staff. There was plenty of parking available which I liked and it was directly in the middle of the zoo which meant we didnt have to take everything with us unlike most places we have visited.

100_2746

The zoo itself was far bigger than I had expected and had a huge variety of animals. I had assumed it was slightly bigger than a farm but it was huge. We took the pushchair so that Ellie didnt have to walk everywhere. The zoo was great for pushchairs with plenty of ramps to get around.

Ellie spent the first 50 minutes obviously feeling very overwhelmed as she cried non-stop…again! Which meant she missed seeing the wallabies and the deer but after her initial meltdown she enjoyed looking at the other animals and running around. She had so much freedom as there is plenty of green space for her to explore. We spent a long time watching the cheeky penguins and the very noisy sea lions (which amazed me as ive never seen sea lions!) Ellie loved watching them swim under water and kept woofing at the sea lions 😂.

This slideshow requires JavaScript.

We saw as many animals as we could but didnt get to see them all sadly. I was surprised at how many animals the Zoo had compared to other zoos I have been to and loved that you can get quite close to some of them.

This slideshow requires JavaScript.

For me I loved the views, we were surrounded by beautiful hills and it made me feel so peaceful as did the Zoo Gardens which was surrounded by hardy and tropical plants giving the gardens a vibrant colour we strolled around letting Ellie explore a bit more to find two bears casually lying in their enclosure not too far away, spectacular!! Ive never seen a bear so close before.

This slideshow requires JavaScript.

We took a small picnic so cant comment on the food however I did venture in to be nosey and the café looked very clean.

To finish our day Ellie raced off to the little woodland play area to let off any energy she had left, the smaller park was great for younger kids with swings, a see saw and a climbing area with slide.

The zoo was clean and easy to navigate which gave me peace of mind that Ellie was safe to wander around (even if sje wont let go of our hands when she is walking) and we had a lovely family day out.

Online price was £12.68 per adult and Ellie was free as she is under 3 so it wasnt an expensive day out at all and I felt it was worth the money for a nice family day out.

 

Posted in baby loss, grief, life after loss, motherhood, mothering a rainbow, mummy blog, parenting, parenting after loss, Uncategorized

October.

Posted on by Amy

October is Down Syndrome Awareness Month and to me is pretty important. As you may know October is also Pregnancy and Infant Loss Awareness Month and for me, both go hand in hand.

A year ago a documentary was shown on BBC Two called A World Without Down Syndrome, a documentary that I’d been dying to watch and excited to see how DS was portrayed by someone who actually lived with DS rather than people who knew very little about the condition. It’s about time the world saw just how this condition changed lives but not in the dreaded way the media make it out to be.

I couldn’t and refuse to think of a life without my brother in it. Since we were small I’ve looked after him, protected him, thought of him as more than a brother, he’s my friend too. My parents did not know he had DS until he was born, and to this day they have been honest in telling the world that if they had known they don’t know what they’d have done. I’m grateful that they didn’t know. More grateful than most people could imagine. This dot make them bad people, it meant that DS was unheard of. The condition wasn’t spoken about (much like pregnancy and child loss still is now!) and people were afraid of what that meant for their child. I thought that this idea of DS being a burden had changed however was shocked to hear that 9 out of 10 people who are given a positive diagnosis then terminate their baby. How misguided they have been.

When I was pregnant with Jason, my brother’s DS didn’t really get taken in to account as it’s unusual for it to ‘run in the family’ however we had the screening test just to prepare ourselves if the risk was high. The screening came back low and we never thought about it again. When we found out Jason had DS we were sat in a hospital room discussing his post mortem. I couldn’t believe my luck that I’d also given birth to a child with DS, only Jason wasn’t as lucky as my brother was and didn’t survive. I did not and do not see Jason’s DS as being a burden. Many people have told me in the past year “It might have been for the best.” “You’ve done your share of caring for a child.” “Maybe someone up there decided you didn’t need another person with such complex needs in your life.” “He wouldn’t have been the same as your brother, maybe it was an escape.” All these words kill me. How wrong people have been. Jason AND my brother have never been burdens on me, I’d considered myself lucky to be carrying Jason any way but him having DS means he’s even more special to me. I don’t know whether his DS would have been more complex as my brother’s or whether it would be like watching him grow up all over again. That chance to find out was taken away from me and I’ll never know. I can just sit and wonder what life would have been like with my baby boy who just happened to have Down Syndrome.

I’m afraid to say I managed to watch maybe 5-10 minutes of the documentary before I was completely overwrought with grief that I began to cry uncontrollably. I realised the fact that people are still terminating babies just because they have Down Syndrome was just too raw for me. I would never have terminated my baby, regardless of whether we knew he had DS or not. I could never justify that being an option and the fact that Jason was stolen from me without me seeing him alive and seeing his beautiful almond shaped eyes and chunky tongue was too much for me bear and I couldn’t watch any more.

I hope any one who reads this blog can watch this documentary as I believe it’s needed to find out that people with DS are some of the most kind, caring, wonderful people you could ever meet. I’m not denying they can be hard work, but isn’t everyone at times? Yes they may have other conditions/issues but the love they provide is worth all the pain and hardtimes.

I would give ANYTHING to watch my son grow up and hit those milestones just like any other baby would. I would give my last breath to see the colour of his almond shaped eyes. I would give my life for him to have his. And yet others are given the option to terminate (right up until the very end of pregnancy) because they are too ignorant to know what DS can entail.

I know I am biased but life with someone who has Down Syndrome does not consume your entire life. For me, it’s made it far better than I could have ever imagined.

Posted in baby loss, motherhood, Pregnancy, Uncategorized

Celebrations.

Posted on by Amy

Celebrations are a funny thing when grieving. Sometimes they are filled with dread, a birthday, a due date, the anniversary of the death. Even happier times can be dreaded, holidays without that person, anniversaries etc. Our Anniversary wasn’t dreaded, for the first time ever we were looking forward to our anniversary. Something we haven’t had the luxury of doing since our first wedding anniversary was spent still desperately sad from the death of our Son.

Continue reading “Celebrations.” →

Posted in baby loss, Uncategorized

What if…

Posted on by Amy

“What” and “if” are two words as non-threatening as words can be. But put them together side by side and they have the power to haunt you for the rest of your life.

On this journey of grief it is easy to get lost, in yourself, in your surroundings, in your mind. I find myself lost most of the time, I forget what I am doing constantly as my mind wanders to thinking of what if. Sometimes I don’t even know I am doing it. I get so engrossed in my own thoughts that I don’t even hear when people are talking to me. It doesn’t matter whether your grief is through losing a grandparent, a parent, a sibling or a child, these are things grief does to you without you even noticing. I find that even when I’m having one of my “good” days I still often drift in and out of conversations and goings on to think about my own what ifs.

What if Jason were alive?
What if I’d have tried harder to protect him?
What if I’d have been a better person before him?

None of these questions have answers, the truth is, I’m not a bad person, actually i’m probably as “good” as anyone gets, I’ve never smoked, done drugs, can count on my hand how many times I’ve drank alcohol and can honestly say I’ve only ever been drunk once so there is no reason for this punishment. As with all bereaved parents, nobody deserves to lose their child.

I found the quote above completely true with regards to my grief, I constantly ask what if but never get the answers i desire. I never will. What and if are two words that bereaved parents ask themselves regularly, yet it doesn’t make the process or the journey any easier. Without answers the questions are invalid, yet we ask them anyway. Even now, I find my mind has wandered so much focused on my own “what ifs” that I’ve written absolute gobbledy-gook and haven’t the foggiest how I’ve come to type these words.

A year on, I’m finding it easier to hide when i’m in my own world, to hide when I haven’t really listened to what people are telling me but answer them as if I had, people seem unaware of it as it happens so much they probably just think it’s me. It isn’t. I was always so switched on and would take everything in before my loss, now all I want to do is go in to my own little dream world and be with Jason. It’s a lovely place I’ve made up in my head, where it’s always night-time and the stars shine as bright as the northern lights and I cuddle my little boy to sleep and listen to his breathing, I imagine it sounds very similar to my husband’s own breath at night when he’s dozing off to sleep. We silently sit there together, taking in every part of him…until I’m dragged away in to reality where I never got the chance to do any of those things and I remember that life really did throw me a shit hand to play.

I never imagined that my life would be like this, that I would carry on with work, relationships, life in general and act like everything is okay. As a child I never wanted this life, I never wanted to be married, have kids, I wanted to be a singer and travel the world on tour. In my adult life all i’ve ever wanted was to be Luke’s wife, have his children, watch them grow up and show them how much I love their dad. I will always want this, even while I’m carrying our second child I desperately want this pregnancy to end happier because Luke deserves to watch his children grow up, he deserves to be shown an everlasting love that you only get from your kids. My whole life is now dictated by my need to make him a father to living children and watch our family grow, yet in all of this I would never change anything about Jason, he was perfect, always will be and our family will always know and talk about him as if he was here.

My life will never change, I will always have those “what if” questions spinning around my head, I will probably always ramble on and make no sense at all to those who don’t understand. But I know there are a lot of people who will make sense of this post and will get where I’m coming from (even if I don’t right now).

A x

Posted in baby loss, down syndrome, Uncategorized

Post Mortem

Posted on by Amy

The following months after Jason’s death was excruciating, I didn’t want to wake up let alone face the world and so many people wanted to offer their sympathies. I had to stay strong for my husband and my family, I was never forced to be the stronger person, I wanted to be. I’ve always wanted to protect and care for those I love and this way I could maintain that.

We planned Jason’s funeral, deciding to have him cremated with a very small service only asking our parents and grandparents to come if they wished. I’m not someone who is openly emotional and knew with others there I would have remained stone-faced and unable to grieve for my son properly. With that said, I also decided I did not want my brother there as again, I would not have been able to grieve. Selfish? Probably but it was MY son’s funeral and I wanted to show him how loved he was. I remember the day as clear as anything, yet I can not remember the date, nor do I particularly want to.

I felt like the support we received since our loss was awful. I heard  from no services and when I went for my 6 week check up I was told that I didn’t need it seeing as my baby was not alive. I gave birth, why is my right less than anyone with a living child? I was shocked and appalled but carried on surviving (not living) until the date for our post mortem results came through the post. We chose to have a post mortem done as we knew it would help find closure in some way and hopefully give us the answers we desperately needed. This was not the case.

During Jason’s post mortem we found that the main reason for his death was the birth itself. To this day this haunts me knowing I should have been able to save him and bring him in to the world. His breech delivery along with a home birth and lack of oxygen meant my beautiful boy died. We also found out that Jason had a hole in the heart which prevented the doctors from getting his heartbeat strong enough to survive without support and he had tissue on his brain that shouldn’t have been there. To look at him you’d have never guessed such a tiny, gorgeous baby would have so many health problems. We don’t know the damage the tissue on the brain would have caused him and I want to believe that him dying prevented him from being unable to live his life to the full like he deserved. Would I have wished for him to carry on living to ease my desire and my selfishness if his health would have caused him so much pain? Never. I would give ANYTHING to bring him back but not like that, seeing him suffer would inevitably kill me.

We also found out that Jason had Down Syndrome, which came as a complete surprise to myself and my husband. I did not see the signs on his face, the eyes, the mouth. Nothing told me that he had Down Syndrome. Now, you see, I have a brother who also has Downs and he is my world, I would never change him and I love the man he has become so Jason having DS meant nothing to us. We had the quad-test while pregnant which came back as low risk and was unlikely our unborn child would carry the disorder. To show just how special Jason was, his form of Downs Syndrome was extremely rare, and is known to be passed down through genetics unlike regular DS such as Trisomy 21 which is not genetic. Jason had Translocation Down Syndrome meaning one chromosome attached itself to another pair. I was convinced that due to my brother having a type of DS I was obviously the carrier and I’d passed this on to Jason. I never imagined that the gene had come from my husband but we both had to have a blood test to see whether we were carriers. If a parent is a carrier of Translocation DS it means there is a higher chance of passing it on to future children and having trouble getting pregnant. I spent the next few weeks doing lots of research in to ways I could help us in future pregnancies and how this would have affected Jason and our family. It changed nothing, my boy was perfect and nothing the doctors could tell us would change that and still hasn’t to this day. When I look at pictures I don’t see the DS I see him, the double of my husband, his hair, nose. He looked so much like his Daddy that it makes me love his Daddy more than I could ever have imagined.

When the results came back I was positive I already knew the answer, what were the chances of my brother and my son having DS if it wasn’t though genetics? Yet the results were in and neither myself or hubby were carriers of the gene and Jason’s DS was just one of those things, there were no answers or reasons why, it just was. In a way I love that my first born shared something with his uncle that none of us would understand, I like to imagine what they’d have both been like while he grew up, would he have been like Zack or would he have been different? These are questions I ask myself regularly but will never find out the answers. I just hope that he never knew any suffering while he was growing inside me or while he was fighting for his life for those short 37 minutes after he was born.

I want to spread the word and tell people about DS, the different types and how it can affect people, families, those that care for them. There are so many varities of the disorder and while my brother is a huge success story, along with so many others, Jason unfortunately didn’t get to live to find out how his DS would affect him. I will spend the rest of my life correcting peoples ignorance, raising awareness and sharing my love for my son, my first child every moment that I am alive.