Posted in baby loss, baby loss awareness, Baby loss awareness week, Blaw2018, grief, life after loss, motherhood, mothering a rainbow, Mum Blogger, mummy blog, Neonatal Loss, parenting, parenting after loss, pregnancy after loss, pregnancy and infant loss, Pregnancy Loss

Dear Jason

Jason Phillips 💙

You are in my thoughts every hour of every day. I wish I remembered what it felt like holding you, I wish I remembered what you smelt like. I wish I knew what colour eyes you had or whether you had any birth marks. I wish I had taken more pictures, I wish I had one of us. I wish I had dressed you in one of those outfits I spent hours deciding on but would have been far too big for your tiny 3lbs 6ozs body. I wish I had a cast of your hands and toes to hold when I miss you a little too much. I wish you got to meet your little sister and I was able to have pictures of you both together, of our family complete. We will never be complete with you gone. I wish she knew her big brother is the best big brother ever.

 

Most of all I wish I didnt know about baby loss awareness week or that babies die even though everything seems fine because that would mean you were still here.

I would give my own life in a heartbeat so that you could live yours.

Posted in A Life Without Down Syndrome, baby loss, baby loss awareness, Baby loss awareness week, Blaw2018, grief, life after loss, motherhood, mothering a rainbow, Mum Blogger, mummy blog, parenting, parenting after loss, Pregnancy, pregnancy after loss, pregnancy and infant loss, Pregnancy Loss, stillbirth, telford, Wave of light, Waveoflight

BLAW 2018

Wow what a whirlwind week of emotions it has been. It has been amazing to see so many people raising awareness as much as they possibly can, especially when some of those people are ones who have supported me and welcomed me talking about Jason.

This week there has been so much discussion around baby loss, in parliment, social media, radio and on TV and it has been a long time coming! There is still so much taboo around baby loss however I do still feel like most of the conversation has been around stillbirth and miscarraige and once again neonatal loss is widely overlooked. Jason lived, he was not stillborn and there is still so many unanswered questions about how babies suddenly die after being born alive that isnt researched and I feel strongly that the baby loss community can be very split in terms of how babies die.

Ive not felt like I can join in with this year blaw as much as I would have liked, ive been amazingly busy with work and life in general which has meant my mental health has taken quite a hit; which has meant grief has come along for the ride and I have found myself feeling much lower than usual. As a result I have had to take a step back and think about what is important for me and my family at this time and knowing I am going through another wave of guilt and grief is enough without trying to support everyone else too.

Tonight is #waveoflight and I have lit my candle for Jason, my tiny little twinny bean and all the other babies who sadly are no longer with us.

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Posted in baby loss, motherhood, Pregnancy, pregnancy after loss, pregnancy and infant loss, Pregnancy Loss, stillbirth

PAL Awareness

This week is PAL Awareness week and i have been taking part in their instagram photo challenge via my personal account. Although I have found it comforting doing something that links both my babies it has made me think so much about how little I knew about pregnancy after loss, I was extremely naive. 

Right from when Jason died I knew I needed to try for another baby. It wasnt that I wanted to replace Jason, replace my grief it was that Jason needed a sibling to watch over and I needed to know that the world wasnt out to get me. I took Jasons death very personal and couldnt understand why it had happened to me when there were people worse than me who had multiple healthy babies and abused that right to have them. So a baby was needed. 

We waited the usual 6 weeks before we started trying, my GP refused to give me a full 6 week checkup as my baby wasnt here (😡) so I made the decision myself that my body, mind and soul was ready. As I got caught with Jason within a month of stopping my contraception I assumed the same would happen this time. It didnt. It took us nearly a year to conceive Ellie, which I know actually isnt very long at all, and from then I started to realise just how difficult PAL would be.

I couldnt enjoy my pregnancy with Ellie, while TTC I was naive in thinking that once I was pregnant Id just be happy with all those pregnancy feelings but it was quite the opposite. It was 38 weeks of pure torture and as we’d decided not to announce our pregnancy publicly I felt very much alone in my journey as I couldnt talk to anyone who had been through loss or PAL themselves. I worried constantly, I had convinced myself that this baby was going to die too, that my body couldnt cope and that I didnt deserve children. The 38 weeks I was pregnant was spent stressed, any bit of happiness I felt when i felt those first kicka were soon gone when I remembered nothing was guaranteed. 

I know how lucky I am to have had a successful pregnancy and I have Ellie in my arms but motherhood after loss is just as hard. People expect you to be okay now you have a living child. Im not. Its difficult and I wish every day that I had both my babies here and I was planning a birthday party for my 2 year old. But again, Im not and I dont. 

I found PAL so hard that it has made me and my husband realise we cant go through that pain again. We cant put ourselves in that situation where another baby has died and I know this means I wont ever have more children and I am OK with this as I have the most beautiful babies already ❤ But  this is how painful PAL can be, it can make you reevaluate everything. 

If you would like to share your PAL Journey please feel free I would love to hear how you felt or feel.

Posted in baby loss, grief, motherhood, Pregnancy, pregnancy after loss, pregnancy and infant loss, Pregnancy Loss, Uncategorized

Life is not a fairy tale…

I’ve been quiet the past few weeks, not only with my blog but also on my personal instagram account. I’ve not quite known the words to write or what pictures to take. I have found this pregnancy to be the hardest since hitting 35 weeks and passing the week where Jason was born. I’m now 37+2 weeks pregnant with our little girl and I just don’t know how I feel about that.

At our last scan we were told it looked like little miss has hair. This is nothing in comparison to how she is doing and what we really wanted to know yet this information really hit me hard. Jason had hair. He had a lot of hair. I don’t know how i’m going to feel when our rainbow is born and she looks just like her brother. In my head I know she’s going to look similar, for one all babies kinda look the same but they have the same genetics, they are siblings and my heart aches that i’ll never know just how similar they will be.

This month i’ve been taking part in the #captureyourgrief challenge on Instagram. Today’s post made me think about how I am around others, in reality I tell everyone I’m fine, i choose not to indulge them in my grief in fear of making them feel uncomfortable. Yet on here I am honest, I know family, friends read this, I know they are the same people who I tell I’m okay, making the most of it etc and I know they know me well enough to know it’s all a load of bollocks. I’ve been scared to tell anyone, even my blog readers, the truth about how I’m feeling because in all honesty I have never felt so scared in my life. Everyone is staying positive telling me that things will be different this time and life can’t be that shit that i will lose another baby so late in to my pregnancy but when it is all you know how can you believe them? I’ve only ever been pregnant once before this pregnancy and it ended in my Son dying at 35 weeks. Why would this pregnancy end any differently? I know i’m doing every thing I can to make sure this baby arrives safely, in the right place and at a time that is acceptable for her well-being but that still doesn’t mean she’s going to survive and I don’t think I can go through that all over again, holding my little girl and not having her wriggle, planning another funeral for a life that barely even began, living every day knowing I failed both of my children and knowing that I don’t want to go through another pregnancy just for it to end in heartbreak all over again. I am petrified of making our baby announcement to the world again and being sent “with sympathy” cards rather than “congratulations”. I’m scared that even if this pregnancy ends well and our rainbow is safe that somewhere down the line we are going to lose her. I am scared of being a real Mum to my daughter. Most of all I’m scared that when she arrives Jason will be forgotten by outsiders. Jason is rarely spoken of by most and I am so grateful to those who do mention him, say his name, light candles and memorise his presence in some way because they aren’t worried about reminding me….I’m never going to forget so please acknowledge he was here.

With just 19 days until baby’s due date i am becoming more and more scared. I just want to be one of the success stories. I want my baby to live, to experience life and to make my family whole again. I want to be able to tell her about her big brother and not just hope he was there when she went. I would give anything to bring Jason back to us, I would give my whole life for him to have survived but I know I can’t.

I’m just scared.

A xx

Posted in A Life Without Down Syndrome, baby loss, down syndrome, Extra Chromosome, grief, motherhood, Pregnancy, pregnancy after loss, pregnancy and infant loss, Pregnancy Loss, trisomy 21, Uncategorized

A World Without Down Syndrome?

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.
Continue reading “A World Without Down Syndrome?”

Posted in baby loss, grief, motherhood, Pregnancy, pregnancy after loss, Uncategorized

Week Two.

Wow. I’m not sure I completely understand how I’ve made it this far but I’m grateful I have. It’s meant that with having two weeks of maternity leave I’ve been able to get the nursery finished, almost finished painting Bean’s wooden drawers and washed all her clothes ready. I’m not used to being this organised but I’m making the most of it because I WILL be bringing Bean home.

I’ve also spent most of this week preparing for Christmas (i’m sorry!!) I absolutely love Christmas and buying people gifts and love to start as early as I can. I’ve already got quite a few presents sorted and planned the rest out quite well. To me, it’s the most magical time of the year. Especially since with my brother having Down Syndrome, Christmas has always been just like it was when we were kids. The excitement, waking up at 4am and watching a Christmas film in bed while we wait for our parents to let us get up. My dad however is the biggest child and has always tried waking us up as early as my mum would let him by knocking on the bedroom walls until we woke up.

As usual, I digress, but Christmas gets me all excited. Even more so this year knowing we will have our rainbow and we will have something to be excited about. I hope.

A very brief post about my second week on leave as I have even more exciting news to tell you in a new post 😀

A x