Tag Archives: grief

#AtoZChallenge2017 Parenting After Loss, Day 23, Letter W – Watching, Waiting, Wondering.

Loss parents do lots and lots of watching, waiting and wondering. They watch their living children grow up with a missing sibling. They wait for the inevitable questions from everyone. They wonder why them. They watch the years pass from when they last held their child, they wait for the time to come when they can be together again and wonder why them.

I watch my sunshine and rainbow babies (sunshine is a before loss baby and a rainbow is after loss) grow and develop their own personality. I watch them play and wish that there was three of them playing instead of just the two.

I wait for the pain to release it’s hold on me. I know this will never happen but the hope keeps me going. I wait for the day that my children ask more questions about their brother.

I constantly wonder about my Milo. I wonder, if he had had surgery, would he have lived longer. I wonder if he was in pain but didn’t realise it as he had been in pain constantly since birth. I wonder how life would have been if he had come home. I wonder about who he would have been. Would he been able to talk or walk with a lot of help. Would he have had a laid back personality like his dad or more fiery like me? Would he have developed to a point where he would have been able to start school and make friends?

 

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#AtoZChallenge2017 Parenting After Loss, Day 13, Letter M – MILO

MILO TOBIAS WILLIAM

Born February 6th 2012 at 37+1 gestation, weighing 5lb 9oz.

Died July 3rd 2012 at 21+1 weeks of age weighing 10lb 2oz.

My son had many issues. So many more than he deserved. His main issue was his brain damage that was caused by his lack of breathing at birth. His development was severed delayed because of this. At his death his development was the same as a 2 month old baby. He could smile and wiggle a little bit but that was about it. He couldn’t hold his own head up or roll over. He had very little control of his limbs.  This damage also caused an illness called bulbar palsy which means he didn’t have a suck/swallow/gag reflex. He had to be tube fed because of this. He also suffered from major reflux which caused his milk to go up and into his lungs and so he had many, many chest infections. Once this was discovered the tube was put into his intestine instead of his stomach and so he had fewer chest infections. Later we discovered his brain damage had also caused him to have epilepsy

My beautiful boy fought every moment of his life and while he was still inside me. He fought through his meconium aspiration to come into this world. That almost killed him before he got to take his first breath. He needed a lot of assistance straight after his birth and for that I thank the doctors and nurses that helped him. Without them he wouldn’t have survives long enough for me to see and hold him.

He spent every waking (and sleeping for that matter) moment in a hospital ward. He was never well enough to come home and spend time under the same roof as his brother or dad. I spent as much time at the hospital as I could. I never wanted to leave his side.

He was initially in my local hospital’s neonatal unit but sadly the unit were unable to care for him so he was moved to the nearest large hospital. They took fantastic care of him and they kept him breathing. I couldn’t visit him as much as I wanted when he was there as I was needed to look after my eldest. Not spending that time with him is one of my biggest regrets. He coped so well with all the manner of tests he was subjected too. It was an awful time. Every phone call or visit told of us of another test they had done/planned to do to try to figure out all his issues and how to help him as well as they could.

One of his tests required him to be put under and he absolutely hated that. He reacted to the anaesthetic and so needed to be moved to a side room with the highest level of care. I really thought we were going to lose him then but he rallied and then did so well he was able to come back to my local hospital to put on weight ready for an operation.

When Milo was 10 weeks old his feeding tube moved causing a fluid build up in his lungs and he ended up back in the intensive care unit on a ventilator. Seeing my baby laying absolutely still with a giant tube in his mouth was horrendous.

It was at this point that we were told that Milo was ‘incompatible with life’. Such a great term to be used. Hearing the doctors say they couldn’t fix my son was like them ripping my heart out and running it over with a 100 tonne lorry 100 times. All I wanted was to take him home and they basically were telling me the only way he way he was leaving was in a coffin.

My Milo continued to fight for another 10 weeks after we were told we were going to lose him. He was giving me hope that we might get to be a family at home. The last weekend we had together was fantastic. He sat up and held a book. He smiled at me. He coped with having me doing his physio and subsequent bath. When we left that Sunday night he was well and good.

Getting the phone call on the Tuesday morning from his consultant, saying we needed to get to the hospital ASAP was so scary. The drive that on a good day took an hour took nearly 2 due to the rush hour. I just wanted to ram all the cars out-of-the-way and get to my boy. He was so pale when we finally got to him and if he hadn’t had an oxygen mask I would have sworn he was already gone. We spent the day with just him and his nurse. I held him constantly and told him I loved him over and over. I even napped with him which I what I wanted to do from the moment he was born.

The grandparents came for a visit to say goodbye. Milo was getting weaker and weaker. I told the grandparents that they had to leave ( I wanted to be alone with my son when he passed). I escorted them out at 21:30 and Milo passed away at 21:38. He was in my arms with his dad’s arms around me. As he went I told him that it was OK to go and that he didn’t need to fight any more.

Making the phone calls to say he was gone was awful. Luckily I have very little memory of them due to the shock. Two of the nurses came up to visit him once he had passed. One was extremely upset and I had to comfort her more than she comforted me. While some may think that was unprofessional, it just showed me how much she loved my boy and how much she was going to miss him.

My Milo’s funeral was held 3 weeks after his death. We had a small battle with the vicar of where we wanted my Milo buried as we live out of parish but I couldn’t see my son buried anywhere else. Luckily the vicar relented and Milo is with my family and shares my paternal grandparents grave. We chose “baby mine” from Dumbo and “There you’ll be” by Faith Hill as the songs for his service. Two of the nurses came to the funeral and I had been in control of my emotions until I saw them. I was so overwhelmed that they came to say goodbye.

I miss my son every day. I wonder who he would have become and how life would have been with him home. If wishes, hope and love could have saved him then he would have lived forever. M.jpg

#AtoZChallenge2017 Parenting After Loss, Day 12, Letter L – Living Again.

After the huge, life changing loss of you baby you may feel there is no point in living. Your main reason for staying alive is gone and will never be in your arms again. You will spend a while in a giant dark fog and there will seem like no way out and you may not be sure if you want to. You may have thoughts that you want to join your child and that everyone else will be better off without you. Not giving into these thoughts is really hard and you may need someone to help you find the light again.

These days do pass, I promise. You have to learn to live again and find things to focus on and enjoy. It is extremely difficult and it can take a long time to happen. Living again when your child can’t is a hard thought to get your head around. You may think that why should you enjoy yourself when your child can’t. I am pretty sure that your baby would not want you to be hiding away constantly and they are still with you in your heart. Smiling again is a small step to living again.

I think it took me 2 months to start to live my life again. Going back to work helped me an awful lot. I began to be me again rather than the mum of the baby that died.

I am now almost 5 years down the line since my Milo passed away and I will never have that life again but I am learning to make peace with that fact. Having his sister also helped with starting to live again.

 

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#AtoZChallenge2017 Parenting After Loss, Day 6, Letter F – Forget

One of the scariest things about being a loss parent is the fear that your child will be forgotten by everyone. Most of the time people don’t actually forget they just think that reminding you of your child will upset you so they don’t say anything. What they don’t realise is that not mentioning them is more hurtful than saying something. Even if it is the wrong thing, it is better to say something than just allow a loss parent to think you have forgotten.

Another scary thing for a loss parent is thinking you are going to forget your child. What they looked like, what they smelled like, what their cry was like, how they wiggled, the colour of their eyes. Photos and video footage can help with this but nothing can remind you of your child’s specific smell. Sadly anything that holds their scent will fade or be masked by anything else it comes into contact with.

My Milo will never be forgotten. I will not allow it. I talk about him all the time and my living children know all about their brother. Once I am gone they will keep up his memory. I share many, many photos of my son over many social media outlets. My house is also covered with photos of him. There is something to do with my Milo in each room, apart from the bathroom. We have photos in the living room and both kids bedrooms. The kitchen has his hand and feet prints on plates on the walls and our bedroom has the donkey (Dexter) which lived with my Milo in his incubator and then his cot. We did contemplate burying Dexter with Milo but in the end I needed it close to me.

There are family members who have forgotten my boy. They never visit his grave or send messages on his special days. They also like to change the subject if he is mentioned at family events. They actively try to get photos without the Milo bear in them. They just don’t understand. There is one family member though that makes up for everyone. She was there for me while Milo was with us and ever since he had gone. She takes time out of her busy life (full-time job and 2 boys of her own) to text me and make sure I am doing ok. She always remembers his special days and will visit the grave on a regular basis. I know she won’t ever forget my boy and for that she is very special to me.

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Mother’s Day when one of your children are gone.

Today mothers, all over the country will be waking up to cards handmade by their offspring, wrapped gifts, lukewarm tea and if they are especially lucky, breakfast in bed. They’ll be surrounded by grinning faces and have one of their own. Mother’s Day should be all happiness and light but unfortunately not every mother has that.

Angel mummies with living children may also be doing the above but they will always have a tinge of sadness in their eyes and in their heart. While they try and show happiness they are hurting. They are happy that they have some smiling children surrounding them but there is one missing and that is all the more obvious on this Sunday. 

The pain of having a missing child on Mother’s Day is only matched by the pain of your mum being missing. Both ways are difficult. It is a day to celebrate being/having a mum. 

Angel mummies may spend some of their special day visiting their angel’s resting place. I know I will be. It will be nice to spend some quiet time tidying and sorting my Milo’s grave. I have bought him some new solar lights so he isn’t in the dark. I also have a new train for him too. 

#WeAreAllMothers

Happy Birthday My Milo

Today is your 5th birthday. You should be opening presents this morning and being too excited to get ready for school. You should be wanting to skip to school with your big brother while telling everyone you meet that today is your birthday. Your classmates and teacher would wish you happy birthday as you enter the school for the first time as a 5 year old.

I should be coming home to confirm the plans and finish making the food for your party and making sure the games are ready. I should be packing the party bags with the little plastic tat that you would have chosen a few weeks ago.

After school you and your friends would have wanted to call at the park on the way home and I would have let you so you weren’t as loud in the house. Once we got home I would have sorted out a snack and then the little heard of elephants would have charged up the stairs for you to show them all your new toys. You would have loved all the little games we and your friends would have played. The picnic buffet would have gone down well and your giant smile would have never left your face. Your eyes would have lit up as your dad entered the darkened living room with a special cake decorated in a way you chose and lit with many candles. You blowing them out would be a great photo. Would you have managed to do it in one breath? Getting you into bed would have been difficult as you wouldn’t have wanted your special day to end.

Sadly all the above is only how I dream your 5th birthday would be but you are not here to enjoy it with us. We will be visiting your grave with a few small unwrapped gifts to place on your headstone. We have a balloon for you too like we got for your brother on his birthday and will have for your sister on her birthday. We will spend some time with you and then come the evening your grandparents will set off a few fireworks for you.

I so wish you were here to celebrate but I know that will never happen. Today should be such a special day but it is just another really hard day in my journey of my life with a Milo shaped hole.

 

Almost birthday time again

In a week my Milo should be turning 5 (how the hell has it got to 5 years already). This is another birthday where he is not with us to celebrate.

My living children want to bake him a cake and have a tea party for him but I am not sure I am able to. It just feels weird to do that when the guest of honour will never be able to join us.

I would be happy to spend the day hiding from the world in my bed and just think of him but unfortunately that will not happen. My husband is taking the day off of work so we can go and spend some time at our son’s graveside in the daylight hours. We won’t be able to spend as much as time as we want as we will have our almost 3 year old with us and it isn’t fair to her to make her sit in the pushchair in the cold while we weep for our son who is not here.

I have bought him some new glow in the dark trains so hopefully they will light him up for a little while. I also want to find a new ornament but that it proving to be tricky. Everything I look at is either too big, has the wrong words or won’t get here in time. I should have planned better but this year has snuck up on me.

I wish that I could be spending my money on special toys and clothes and finding something special that my 5 year old would love to do with his big brother and maybe some friends from school.

I miss him so much but the pain doesn’t get any lighter you just get used to the weight.