18 months

My tiny little boy turned 18 months yesterday! What? How is this possible? Very odd. I’ve been so busy that I barely noticed it happening.

We went on holiday last week to Hay on Wye. Just for the week in a rented cottage. But we had a lovely time. Benedict was happy because he had his nana with him all day every day. This boy does loves his nana!

Also the house overlooked farm land. And every morning we saw a friendly cockerel outside the kitchen window, which was pretty much the most exciting thing in the world to Benedict. There was also sheep. He spent most of the days baaing and cock-a-doodle dooing.

He had a great time exploring, running around, and the house had a lovely garden – which we don’t have, and he spent every possible moment there.

Here are some pics

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he loves to carry the umbrella. That was at Llanthony Priory. It was just breathtaking.

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and he met dinosaurs

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and here’s a picture of him the other day, sitting on his new scuttle bug

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of course, being Benedict, he doesn’t just sit on scuttle bug

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haha! He’s so adventurous. And always friendly

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he can be a little grumpy determined. Especially if he doesn’t get enough sleep, or he gets up too early. Or he’s teething of course. He has acquired about 6 teeth in the last 6 weeks, so the poor boy has hardly been happy.

Anyway, I’ve weaned him down to only 3 feeds a day, and research suggests that hydroxy is actually safe for nursing, especially as he hardly feeds much now, so I’ll start it when I see my doc next month and wean Benedict with no huge rush.

I must go to bed. It’s 11pm, and I’m sure Benedict will have me up at 6am tomorrow.

 

Rheumy progress

I had my follow up rheumatology appointment last week and I’m happy to say that he is actually willing to do something for me. Not all my bloods came back, apparently they had some trouble with some of them, so I had more taken. But he said despite everything looking OK, my ANA is now extremely high and he doesn’t like to leave it like that. More than likely it will become clear later what they are dealing with, but until then he is starting me on hydroxychloroquine. It’s a lupus/rheumatoid arthritis med, but he said since it’s fairly benign, it’s safe enough to do a trial and see if it helps some of the symptoms.

He can’t promise anything, but he doesn’t think he would do any harm. I’m kind of excited to actually try something that may help. I’m happy that he is listening and willing to accept the fact that something is wrong. So YAY! However, he wants me to stop breastfeeding before we start, I’ve been cutting down a feed or two for Benedict, but i contacted a breastfeeding drugs person and they said that research shows no ill effect from taking hydroxy for the baby, so I could continue it. Plus my rheumy says he would even let me stay on it during pregnancy, should I get pregnant, he just doesn’t like to start these things in the middle of pregnancy, or while breastfeeding. So I’m half and half about whether I rush into weaning, or just keep as is now (3 times a day) and slowly wean him while taking hydroxy.

Either way, I’m very relieved after all this to have a plan. It’s been 7 years. This is the first step in any positive direction I have taken. Whether it works or not, I don’t know.

It’s weird, a couple of days before the appointment we were in the shopping centre, when two women approached us and said they had a list of people that God had told them they needed to pray for. On the list was “turquoise beads” and my mother was wearing a turquoise beaded necklace. My mother told them I needed prayer for my illness. Tae into account that I’m not exactly religious, so it was a bit weird. They proceeded to pray over me, while staring into my eyes and I felt embarrassed. I couldn’t help but wonder what they wanted, did they want money? Did they want to “recruit” us? But they didn’t seem to want anything, they simply prayed, wished me well and left. What did they get out of it? Even though I am not a practising Catholic, I was happy for any help I could get. And then I saw the rheumy and he had completely changed his tune, from “oh you’re fine, lots of people have a positive ANA” to “we need to do something about this and watch you closely,” I was in shock to say the least. He is, however, leaving in 8 weeks, so he wants me on the hydroxy before then.

Aside from that, Benedict is fine. 17 months old and still super spirited. We are currently on holiday. Our first in a while, so I’m trying to relax. Except for the fact that I left behind my entire rucksack with all my meds, my eye drops (for my very dry painful eyes) my steroid nasal spray etc…but worse of all…Giddy bear was in that rucksack. I take him with me if I ever go overnight, and I’m so sad I left him behind. What if something happens to him? It makes me obsess thinking about it. So I try not to.

Relaxing. I’m relaxing. Who knows, maybe I’ll have a new lease of life with hydroxy. Could happen!

International Bereaved Mother’s Day

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Today, is international bereaved mother’s day. It is a day to remember all those mothers who have a little someone in heaven, an empty chair at the table – those who have to love their child from afar. But I also see it as a day for those suffering from infertility, those who are mothers in their heart and in their dreams, but have a long (perhaps impossible) road to make it a reality.

Mother’s day when you’re only baby has died is torture, you feel lost, you feel alone, you feel empty. Your arms ache to hold your baby just one more time. And that sadness is still there on Mother’s day now, I have my Benedict, but I miss my Gideon. I remember the only mother’s day when he was alive, and the first time I held him and looked down at his face, peacefully sleeping. I was filled with more love than I ever thought possible.

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Today, is a day I can think about how to be a mother to Gideon, when he is not physically here. Sometimes I even feel as if he is somehow the “parent,” the wiser one. He is in heaven, he knows everything, and he is with me throughout my life – my little angel. It’s a strange feeling of protectiveness and love, while knowing he, no doubt, knows more than I. He knows heaven, he knows my heart, my soul.

He is a child, but more than a child.

He is a bright star in the heavens, and while I feel like I know him well – he knows galaxies, heaven and earth, the universe and all that it means.

Today, is a day of complexities.

I am mother to the universe.

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Crazy Dreams

I’ve been a bit of a flare since I’ve started this autoimmune diet. I’ve no idea if the diet is causing the flare, but I feel rough! I’m hoping that it’s some sort of detox…or a “get worse before you get better” thing, because I can’t keep doing this for much longer feeling this way. I’ve got a permanent headache, constantly bloated (I even wake up bloated in the morning) nasal and mouth ulcers constantly, joint pain constantly, exhaustion, confusion, tinnitus, and my face rash has been so bad it’s been a little embarrassing even going out. I’ve also been having very very vivid nightmares, lots of dreams about babies dying, miscarriage and baby loss. It’s bizarre. It’s the kind of dreams I would expect while pregnant, and nope, I’m definitely not pregnant.

I’m in the middle of trying to pass exams to work for an internet rating company. It’s hard work, there is lots of stuff to learn, and I had my first conference call today. I can’t say much about the work due to confidentiality, but it isn’t easy at all, especially when you feel as spacey and sick as I’m feeling right now. I have a deep fear that one day all days will be like this, right now this is my worst, or almost my worst, but even the good days aren’t that good anymore, and the bad days are just increasing. By the time they figure this out, it could be a permanent state of confusion and pain.

So, hoping that this is just detox. I’ve been on the diet now for 5 days. That is all. I’m giving it a little longer before doing the dreaded thing…going to the doctors again. It feels me with fear and loathing to even think of it.

Benedict is good. He’s been a bit strange recently, acting incredibly hyped up (even more so than usual) and then crying uncontrollably for no apparent reason. He loves spinning in circles, even while eating, pouncing on me and biting me and diving head first off the chair! His feet caught on the chair and he did a flip in the air landing on his head. Ouch! He’s brilliant though, always making me laugh and if I could just borrow a little of his boundless energy I would be one happy mummy!

We had a lovely bbq yesterday as the weather was so nice, I gave Benedict a bucket of water and some toys and he had a great time splashing it everywhere, pouring it on himself and me.

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It was fun. And I’m tired, so good night (I hope).

Visited His Grave

I still need to make a video for Gideon’s third birthday, as always, but I can’t find a song that speaks to me. Maybe I need to listen to the radio more to find that song. But I don’t know. Usually, I just hear something, and I know it’s right.

I had a nice Easter, of course Benedict was ill with something, he had a high fever and a nice rash all over his body. With scarlet fever going round we were worried, but the doctor decided it was likely viral and it went away pretty fast.

I tried not to eat too many Easter eggs, for waistline reasons. And Benedict enjoyed helping me out I’m sure.

Easter is always bitter sweet for me, it was Easter time that we lost Gideon of course. We had to delay the funeral as it was Holy Week. When I think back, I remember very little of the week or so leading up to the funeral, or even the funeral itself, I navigated it in a sort of trance like dream. But I know it was tomorrow, the 26th.

I remember trying to choose flowers. Asking if they could make anything small enough to fit on a tiny white coffin. Things like that stick in your mind. I remember visiting him for the last time in the funeral home. And he looked so small, but so peaceful. I remember thinking I wanted to pick him up and run away with him. As absurd as that sounds. I just couldn’t imagine never seeing him again.

And I never imagined making it here. Three years down the line. Somehow, still going. Despite the pain. And, yes, chasing around a different little boy, a laughing, funny little boy. It was the dream. I got the dream because of Gideon, but I never got to have it with Gideon.

We finally got the chance to go and visit his grave, this year everything has seemed to go wrong, there has been so much stuff happening, so it’s been impossible to go visit. Once I arrived I felt so guilty we hadn’t visited sooner. His grave was beautiful of course – we had planted flowers, and they were in bloom, but still, I felt we should go more often. A couple of things were missing from the grave, I’m hoping just from the bad weather…

Benedict helped by handing us flowers and walking around holding the gardening fork, looking purposeful. He also took a flower, and walked with determination over to another grave. The grave of a little boy who died aged just 6. He just toddled over and smiled, and then put the flower on the boy’s grave. You could hear him muttering to himself, about dis and dat.

It was very sweet to watch him, I don’t know why he chose that grave, he just did. And we left the flower there of course. He seemed so determined about it, I couldn’t take it away.

You can see how Gideon’s grave is a little wild, but that’s because we planted so many flowers there. I might need to trim them back a bit so they don’t overwhelm the little stone.

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Benedict likes the cemetery, he waves at things we can’t see. And because we talk about Gideon a lot, he likes the association that these flowers are for Gideon.

Anyway, it’s late again, and I must go to bed.

Some pictures

Here are some lovely photos from Gideon’s angel day and birthday

This is Benedict with Gideon’s balloon. He played with it a lot. So a photo was hard to get.

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This is Gideon’s Angel Day cake. I spent a long time trying to get it right. The arc was supposed to be a rainbow, but I ran out of time…And it kept falling apart.

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We went to the beach as it was a lovely day, and had a picnic. beach(c) chair(c) hat(c)

 

We tried to have a lovely day for Gideon. As if he were with us. But I can always feel very keenly, the lack of Gideon’s physical presence on beautiful sunny days like that. I miss him. A lot.

If you are new to baby loss, I want you to know that it does get…easier, the pain is still there, I still miss him a lot, but the rawness has gone, that huge gaping raw hole has somehow become less…consuming.

At the start, when the world seems so cruel, and devastating and you don’t even want to wake up up in the morning and the grief is this clawing animal ripping your heart to shreds with every breath, you can’t imagine ever living a “normal” life with that kind of loss. But you do. I still miss my Gideon, every day. It isn’t just something I say, I don’t just remember him on his special days. I actually think about him every day of my life. His picture is up on the walls of almost every room, I remember him. I think about him. I love him. I miss him.

And somehow time keeps moving forward, taking me further and further away from the year that we met and said goodbye.

And even when the memories start to fade, and the little pieces of the days we spent together become less clear in my mind, and the evocative memory of his smell, his warmth, his tiny hands…even when all of that is a struggle to unearth from my mind, I still love him.

Eternally.

 

Happy Angel Day My Gideon

Three years ago today, we made the hardest decision we have ever made. I never even imagined having to make the choice to end my child’s suffering, but we did. I know that it will never get easier to deal with his death, but I know that he is never ever forgotten. My little boy gave me such joy in his short life and I miss him every day. Wherever he is, I hope he knows how much we love him.

Today, this article came up on my newsfeed, from StillStanding Magazine. Of all days to see this article, I needed it today. It was like a small message from my Gideon. It gave me a little bit of peace.

We had a nice day. We went to the beach, we had cake (photos to come tomorrow) and we remembered. I haven’t been able to go to the grave, due to so many things happening at once, including the car needed repairs, so we can’t drive. But next week, I will finally go and visit him, and do some weeding and tidying, show his grave some love.

My Gideon. Thank you for giving us the 17 days, thank you for coming to us and being our little boy, thank you for showing me true strength and love. Thank you for our rainbow. Have fun in the clouds little warrior.  Mummy  x