10 Years

On the 30^th March, it was 10 years since Gideon was born. I have trouble believing it has been 10 years. That Gideon, had he lived, would have been 10 years old.

What would he have looked like? Would he have been more like my second son, or my daughter?

How different would my life have been, had the story unfolded differently? Would I have had my second son just 2 years later?

When I think of what grief looks like, 10 years down the line, I find it hard to put into words. I’m not drowning. I can say that, with honesty, I’m not drowning, there exists, in the time between his death and now, a quell in the storm. A quell that occasionally rises up, with waves, smaller than before, but still as strong, and sometimes they pull me under, however briefly.

But I always rise again. And the quell carries me onwards, and I breathe. And I live. And I love. And the moments of being pulled under get further apart, and I forget how strong the grief can be, until one day it hits me again, and I feel pulled down, momentarily lost in the swirling hopelessness of loss.

But I always rise again. I carry with me a heaviness, a brokenness, that I feel cannot be mended or fixed. And I don’t wish it to be mended or fixed. It is my story, his story. Our story, as a family. The Japanese repair their broken pottery with gold. They call it Kintsugi. making their breaks and flaws beautiful, they embrace them as part of the story, the individuality of the moments that make up our beautiful self. I fill my brokenness with love. It fills the cracks and breaks, and it holds me together. And I love all the moments that made that possible.

I loved all the seconds I spent with Gideon. Even the hard ones, the scary ones. The soul-destroying ones. I love them all, they are me. And they are him. And they are us.

Wherever you might be in your grief, whether it has been 10 minutes, or 10 years, know you will one day ride those waves of grief, without drowning, you will survive, and you will not forget. Love is eternal, it is not broken by time, or by joy, do not be afraid to let the joy in, embrace the happiness, choose to smile. Love and grief are one, you cannot grieve without love. So embrace the happiness and embrace the sadness and grief. You will rise again.  

We love your, my Gideon.

Three Generations

Gideon turned 9 on the 30th March. And, we remembered. We always celebrate.

That day, my niece went into preterm labour at 27 weeks, with her first baby. And ended up on hospital bedrest with bulging membranes, at the same hospital I was on bedrest with Gideon.

And I could not go see her. Because of Covid19. So we video called, and I struggled with the date and the similarities and my fear for her.

On the 2nd of April, she gave birth. Normally, at 27.5 weeks, her baby would have likely been fine. But baby had several heart defects.

She had her baby, and I was not there for the labour like she wanted. because of Covid19.

Baby went to NICU, the named him Otis. And he fought. He fought so hard, through so much, in such a short time. I could not be there while she went through what I went through in NICU. I saw him on video calls. I fell in love with little Otis. And I hoped. I hoped that finally, one NICU baby in our family would come home. My mother lost a NICU baby too.

On the 4th, little Otis’ heart stopped. And I was not there. I could not be there to hold her as she cried, or offer her some strength, or support. Because of Covid19.

Eventually they let me and my mother in to hold him. And say hello and goodbye at the same time.

And I wept. I wept for all the things that should have been, for the memories of holding my Gideon. I cried and cried, and all the old wounds I had carefully closed, ripped open. As I held tiny Otis. Tiny but bigger than Gideon. I wished so much that things could have been different for him. For her, for my young niece. I wished she never had to know such pain, that no one would ever have to lose a baby. Ever had to hold him as he died in their arms.

Three generations of us. In that room. My mother, me and my niece, all of us holding onto that same experience, that trauma, that pain, that indescribable love.

Nothing will ever be OK with losing a child. And it doesn’t matter if it’s 9 years or 90, I will still hurt when I hold a tiny angel in my arms. I will weep for all the babies gone too soon. I will weep for the pain of the mummy and daddy. I will weep for the life the baby should have had. I will weep for Gideon and the choices we made.

His funeral is next week. Most people cannot attend because of Covid19. Even her own father.

So please. Stay home. All of you. The hidden victims of Covid19 are all around you.

And hold onto hope for a better world.

3 months post thyroid surgery

So it’s been 3 months since my half thyroidectomy. I thought I’d update with my scar now.

Its kind of red, but it’s getting there. It’d noticeable, but I think only if you’re looking at it, only doctors and nurses notice it most of the time. It doesn’t really bother me. I’m happier without the annoying plus sized thyroid anyway.

My husband is going away for the week for work at the end of the month and as luck would have it, I got an appointment for my abdominal ultrasound that week AND an appointment at the movement clinic. I desperately need this ultrasound, they have to figure out what’s causing these issues. I’ve found I’m best off eating very little at all, around 800 to 1000 calories a day, it limits the pain. Yet I’m not losing weight. I can’t take children with me for the scan, which leaves me asking my mother to take time off work. One of the major issues with home educating children, no time to get stuff done. And they will have to come with me to the movement clinic, that will just be a follow up on my brain MRI and my tremors.

My little Benedict turned 6 this week. 6. It hardly seems possible that my tiny baby is 6. He came into our lives like a whirlwind, and he is so full of intelligence and love. He’s sensitive and full of energy. He’s kind, so kind and thoughtful and he’s full of fire and excitement. We made him a stack of cookies, as he doesn’t eat cake, and went to legoland.

Christmas Wishes

So, of course, Christmas is fast approaching. I’ve not felt motivated to do anything, but I’ve still done it. My tree is beautiful, my lights twinkling, santa has been seen and talked to, gifts are mostly bought and I’m getting more tomorrow.

I am here, I am present. My children are so excited to open their gifts. My son wants transformers, my daughter wants pigs. If I could make my body and mind better, that would be my Christmas wish. Having a healthier body would help my mood anyway. The wishes I have for christmas are impossible to grant: Health, Gideon, financial security.

It would be easier if I just wanted transformers, if my wishes were something I could buy boxed on a shelf. If health was as easy to choose as turkey. Instead I’m choosing happiness. It’s not boxed, I can’t pick it up from a shelf, and when I choose it, it’s often so hard to find, hidden among all the hurt and sadness, buried away, disguised as a dream. But still I chose it. Today, now, tomorrow, for Christmas, during all the trials, I choose happiness. Because, I deserve it. We all do.

Chronic Illness: a moan

I’m so tired of being ill right now, virus after virus has drained me of every inch of patience and sanity. This current virus has me with horrible sinus, facial, head, teeth and jaw pain. Recurrent sinus infections suck. Nothing touches the pain, not even my strongest cbd. And I’m getting muscle cramps and joint pain. The surgery seems to have triggered my connective tissue disorder. It’s worse than it’s been in ages.

My remaining thyroid is functioning well enough. I don’t need supplements. So I’ve been discharged from the endocrinology clinic and ent now. It should be good. It should be hopeful, but it feels hollow. I feel so unwell. So tired. So sick. So much pain. I feel like I can’t move forward right now. Chronic illness sucks. It’s Christmas soon and I need to be well enough. I need to claw back some health. I can’t even take painkillers, they hurt my stomach. I feel like I’m a mess. A bit fat mess putting on a bright smiling mask for the world. I refuse to regret having the surgery. Because it was a treatable problem. And treating it took the hyperthyroidism issues out the equation. I’m coming back stronger. I will. Because I need to.

World Prematurity Day

Today, is world prematurity day. Prematurity sucks. Medicine has come along so much over the years, but it still sucks.

It sucks knowing your baby will be born early. It sucks worrying about their chances of survival. It sucks waiting to see if they’ve survived birth. It sucks watching them suffer. It sucks not being and to hold them for days or weeks. It sucks leaving them behind and going home. It sucks walking in and seeing serious faces and wondering if it’s about your baby. It sucks being called into the private room to talk about your baby. It sucks being told they will be brain damaged if they survive. It sucks being told your baby died and was brought back. It sucks seeing your tiny baby cry silently through the vent. It sucks watching them have seizures over and over again. It sucks making choices which could be so wrong. It sucks telling them to remove life support. It sucks watching your child die. It sucks knowing you have to say goodbye. It sucks wondering if they might have survived. It sucks carrying the coffin of your firstborn. It sucks grieving every day. Boy does it suck.

It doesn’t have to be this way. We can prevent many causes of prematurity and many of the causes of neonatal death. So others may not have to go through that. Like I did.

Somedays

I can’t pull myself up out of the haze. My resting heart rate had been a little low today with lows of 52. Now, I know I’ve been hyper for years, but that seems quite low. So I wonder if my thyroid isn’t quite functioning as well as it should. Plus, I’ve read that once your body is used to being in a hyper state, it no longer functions at normal levels of thyroid hormone. It resets its normal. I don’t know until the 4th December if my right thyroid needs help. But I’m so tired and quite low, so at least it would be an easiesh solution. But since nothing is ever easy, I doubt it.

I have been feeling so unwell, stomach pains again, excessive bloating and discomfort that I tried to fast a bit today. Its the only thing I know that actually helps. But it was difficult.

My scar had been sore. Sore, a bit red. Probably nothing, but I rubbed some cbd rub into it. Which helped.

It’s weird, I haven’t had low mood in ages, but life throws grenades at you, with my surgery, marital problems, financial issues and poor health, I struggle to keep my head above the water, my smile on my face and hope in my heart.

If I could sum up how I feel right now, it would be… Somethings coming. I thought it was thyroid cancer. I feel like I’m waiting for something but I don’t know what. I can’t explain it. I hope it’s just hypothyroidism. Well not “just,” but easier to fix. Hopefully

4.5 Weeks Thyroidectomy Recovery

Recovery is going great. My scar is healing very nicely. It can look red because I’m so fair skinned, but that’s normal.

I walked the walls of our local castle this weekend. I’m a bit less fit than I was before surgery, but I’m getting there. I’m very tired and my muscle twitches returned with a vengeance this week, treated of course with cbd oil. I don’t know if my thyroid is functioning optimally or not.

Due to a lull in work, I’ve been able to spend time editing my recent book. Collecting info on characters and plot, pulling scenes apart like an old jumper. I want to get that published in the new year. There’s a lot I want to do. And I don’t want to keep putting everything off. Writing is my calling, it always has been. And I’ve put off all this stuff for me, for so long, something has to change. If I want to make a living writing, I have to fill my life with writing. And getting my body to optimal health, whatever that means for me.

And not staying up until 1:30am arguing on Facebook.

So that probably means I should sleep

No Cancer!!!!

I had my follow up appointment today, and yep, no cancer. He actually hadn’t looked at the results until I was sat right there. It said something about follicular cells and no evidence of vascular something. And it was 6cm x 5cm x 5cm It’s actually all done with. He discharged me from the ENT clinic. Unfortunately my last blood results didn’t go through, I don’t know if they lost the sample or something but whatever, it didn’t happen. So I don’t know if I’m hypo or hyper or euthyroid. I have an appointment with endocrinology in December so we can assess that then.

It’s a bit weird. Years of this thyroid causing issues, worrying about growth, worrying about the surgery and its all done with. I feel almost lost, it’s hard to explain. I can move forward and try to sort out my other health issues. Claw back health. I don’t know. It’s a tired sort of day. I need to redefine myself, healthy, fit and strong.

I think I put a lot of eggs in the thyroid basket. I had a lot of hope of things improving and changing. I knew half of it wasn’t going to happen, but it made it easier if I thought “maybe once my thyroid is sorted…” and of course, most of it hasn’t changed. I still have major reflux, stomach issues, lymph node pain, fatigue, some shaking, although less, joint pain, headaches… And I’ve got to accept that they are my life. They aren’t being cut out with the thyroid. This is me and I need to do my best to help the best me live my best life. Whatever that means.

We took the kids to home Ed group today, they saw their friends and had fun and messed around. And we ended up waiting for 1.5 hours past my hospital appointment to be seen. So they were very restless by then. And it took 5 minutes after all that.

To another day. And better health.

Not a good day

Today, was not a good day. I had a flare up of a long standing stomach issue. I knew something was up when my tinnitus was bad, always a sign of imbalance for me. I also had a feeling of something in my throat. Then after lunch I felt really unwell, absolutely exhausted.

I pushed through and took the kids out for a walk. It was beautiful, my youngest was just starting to get digging with her spade in the sand when the heavens opened and it started to pour down with rain.

We ended up at the local cafe, where my children, hyped up on far too many Halloween sweets, drove me to distraction. Then my husband arrived. Then my mother and we decided to take the hyper ones home. As soon as I left the cafe the downpour started. By the time I got home I knew I was in trouble. The pain is awful. my stomach feels like it’s burning up inside, my lower abdomen feels like a cross between the worst period pains and food poisoning. My lower back is in constant, unrelenting agony. It’s not functional, it doesn’t change if I move, it just hurts constantly. A hell of a lot. I took to bed after the kids went to bed and slept an hour or two.

These episodes are increasing, they used to be rare, I don’t know the trigger. Sometimes I wonder if it’s high fat foods, or too much protein, or too many carbs.

I wonder if I have GERD or an ulcer, or h pylori. Or if it’s gallstones, just ibs, pcos, I don’t know. Nothing fits everything at once. But the pain. The unrelenting pain. It’s not like the pain from my connective tissue disease. But I know something isn’t right. I just don’t know what. I feel like I’m working through departments at my hospital. Trying to get my health back on track. And it’s not working. I feel like crying. I hoped the thyroidectomy would be my miracle. But it wasn’t. And I am tired of all the health issues and what ifs and pushing through life in pain.

I am tired. And I try to stay positive. A lot. I do. But wow I need a break.