Not hiding my boy away

A child breaks their leg, Mom shares image on social media and the comments that follow are full of “bless them” “oh little brave one”. A special needs parent shared their reality and the response is so very different.

Regardless of how people have viewed the coverage regarding Alfie Evans I am getting truly tired of hearing “you shouldn’t show photos like that” “who wants to see a sick child”.

It’s comments like this that makes us special needs parents feel we have to hide in the shadows. It’s ok to share a photo of a normal (I hate that description) healthy child with a broken leg but how dare you share a complex kid?

Comments like “it’s made me feel uncomfortable” are driving me crazy. I’m sorry my life is making you uncomfortable, I apologize that my child’s feeding tube makes you look away. That you feel sad that you have to think of children in situations like this.

Jog on,

Our children are gifts, if we want to share and journal every step of their journey we have the absolute right to. If we want to share our fear, pain and worries we will.

It’s comments like those written above that left me struggling alone with Livvy. It’s attitudes like this that stopped me reaching out to be supported.

It’s not happening again, I will not hide my beautiful boy from those that are sharing our journey with me. I will not allow myself to feel isolated again. As far as I’m concerned if you don’t like what you see or read, don’t follow.

I am so thankful for the community of parents whose children have complex needs here on social media. For the wide-awake club who keep me company in the endless early hours. Those that have been there that can advise or encourage me and for those that just get it.

Social media has brought the world closer, its connections have brought me friends I love dearly that I have yet to touch or hug, but they have pulled up when I’ve been feeling down, wrapping me up in encouragement and love.

Yes, social media has it low points but the community of parents with children with special needs have been a lifeline to me. I love seeing photos of their beautiful children, love sharing in their moments both good and the hard. Love being given the opportunity to support and encourage them as they do me.

So, will I let those that “feel uncomfortable” stop me from being part of this amazing community, no chance I love my people.

Will I hide my child from the world, no way he is too blooming gorgeous?

 

 

 

 

My rainbow tribe

Last Friday night was one incredible evening along with a wonderful group of people I hosted a Rainbow disco, a fundraising event in aid of raising funds for our local Children’s Development Centre sensory room.

Over the years I have hosted a number of fundraising events, but Friday was so different as I didn’t do it alone.

I first attended the Children’s Development Centre 16 years ago when we started on our journey into investigating what was happening with Livvy. I was welcomed by staff who wanted to support and help me as much as they could. I can honestly say that some of the faces may have changed but the philosophy hasn’t everyone really wants to support you and your child.

I started at Little rainbows  a specialist playgroup for children with complex needs in April 2016, Daniel had been with us for a few months and it was time for us to encourage him to socialize and challenge him to learn and engage with others outside the family. Whilst he struggled with attachment and often switched off, from day one we were all made welcome by the group. The staff are genuinely lovely and the parents, well they are some of the best people I have had the pleasure to meet.

I have written here often on my blog how I struggle with friendship yet here at Little rainbows I have been blessed by some amazing friends. Women and men who have opened their heart and arms to both Daniel, I and even Alan (lol). We have become part of a tribe, the rainbow one.

Daniel will be leaving this group very soon as he starts his school journey and whilst I will miss the lovely staff at rainbows I know I won’t have to miss my friends, little rainbows is what introduced us,but friendship is what holds us.

We are the rainbow tribe.

A special field

This weekend I received some news I knew was coming yet never wanted to hear. My friends child had passed away, disappeared into the hours of the morning leaving behind a heartbroken mother. My friend knew she didn’t have forever but was praying desperately for one more day.

One more day.

How often I would wish for Livvy one more day, one more hug, one more giggle.

How often do i allow grief to consume my heart?

Too often .

This last week I have been camping in a special field in Shropshire, the field itself isn’t rather special but for a week or two each year it transforms into something rather remarkable.

From the grassy emptiness it becomes full with love, laughter and friendship.

It overflows with energy, life and living.

For this time each year this field becomes a place where friendships are forged in life experiences.

This field becomes a place where children the world tells cannot, CAN.

This field is rather dangerous though, it is rife with infection, a infectious disease known as hope.

It creeps up into your soul and you start to believe that anything is possible.

Children who can not communicate start to talk, children who cannot walk take steps.

Parents close to breaking become refreshed, families divided are reunited.

This field has no barriers, its a place where everyone gets to be exactly who they were made to be. Not everyone gets on but there is a freedom in acceptance. We are all walking our own pathways and sometimes they can be overwhelming, but here on this field thats ok. You can cry, scream or break down, complete in the knowledge that we all get it.

Over the last week I have become a people watcher, I have observed shy children blossom in confidence, from the first awkward hello to beginnings of life long friendships.

From fire pits to bouncy castles friendship has flowed around this field, some already a lifetime in the making, others being created in that moment.

I have heard so much laughter than even in my grief it has lifted my spirit.

We have had fancy dress from the cute to the never to be unseen, quiz nights, animals and magic. We have hosted our own special Olympics with a level of competitiveness and determination I still can not get over. A child may not be able to walk but they can scream with joy at whizzing over the ground determined to get a medal on their chest.

A balloon release so painful yet so beautiful, how can the most painful part of the week be the most amazing? My heart breaks as I watch those balloons lift up into the sky, my soul aches for my Livvy so desperately I can hear it scream. Yet as my eyes drop to those around me I am struck by how wonderful life is. How everyone standing there beside me gets it somehow. Some may have experienced a loss, others may live in fear of it.

Yet fear of death isn’t found on this field, fear isn’t welcome here.

This field, this camp is about living.

Its about packing life into every moment.

Its about cherishing one another and holding on to what really matters.

The world isn’t allowed on our field, for a week each year we are protected from the daily battles our lives bring to our doors. People who don’t understand don’t visit this sacred place, every chair is filled with people that understand or accept.

Different struggles, different issues, different lives but we are united in our love, our love for our unique wonderful courageous children.

Our special kids. 

 

  • A big thank you to  all at Lower Lacon caravan park for looking after our special field for us all. For welcoming us in a way I have never experienced on any campsite anywhere else and for also being just truly wonderful people that I am pleased to call my friends.

Weaning fun

This year we have been given the go ahead to really start weaning my little one. Although we don’t think he will be able to eat enough to fulfil his needs it is exciting that he can try new taste’s and experience different textures.

So starting on this journey I was rather chuffed to see that the highly-anticipated Aldi Baby & Toddler Event is returning to stores across the UK.

They have a fantastic range of products which will be perfect for our journey into weaning.

The event  will be starting online from the 10th August and in stores across the UK from the 17th August.

Weaning Daniel is going to be different from when I weaned my girls as he will only be able to eat small amounts so storage and the ability to make my own puree’s is a must, as so far I am wasting a lot of the jars and pouches I have opened.

Daniel seems to be enjoying his tastes and tries and so far we seem to be loving strong flavours and not liking pumpkin but we will see. Todays banana was a big hit.

The smile says it all.

 

 

  • I was gifted the goodies from Aldi’s for the purpose of this shout out about the baby and toddler event but all opinions about it being awesome and well worth a visit are my own.

My favourite photo

This was taken in May this year and it was the first photograph of Daniel without his NG tube. It isn’t my favourite because it’s the first without his NG but because of my relief of seeing that smile after surgery.

 

There is nothing worse that handing your child over to surgeons and theatre staff, you have to trust them with your heart. This gastrostomy surgery was the first we had faced with Daniel and nothing could have prepared me for the fear I felt as I left the theatre, my legs literally felt like lead. I could barely breathe for the hours he was in down.

So this photo is my moment, the moment I could breathe again. 

So what it’s the weekend

Seriously it’s official if I see one more TFIF status today I may just lose it. 

So what it’s Friday that doesn’t automatically mean that tomorrow I get to do nothing. No tomorrow I will still have to get up to do medications and nappy changes. My back will still ache from lifting and if we follow on from our current evening schedule I will also still be sleep deprived. 


Oh it’s the weekend so that means my big boy is off and that brings me the joy of chasing him around and saying “please leave alone” every second for two days. 

All joking aside, ok moaning aside I do appreciate the end of a normal working week and that for many tomorrow and Sunday are days of relaxation but seriously stop rubbing it in. 

Please think of us exhausted parents those like me to who the weekend is just another day. In fact the weekend is actually a little harder as school does give me a little respite. 

I absolutely love my life and fostering a child with special needs is a great job but the reality of it is that it is 24hr, 7 days and week and 365 of the year. Being a mom of a complex needs child means exactly the same. So as a mom and foster mom of both I may be slightly shattered. Though as we enter the weekend of Mother’s Day I am so thankful for my boys. It just means at times I just have the urge to strangle those who write TFIF. 

Born in my heart 

So it’s seems my little man loves the hospital so much he had to return for another visit. This time of course he had to up the drama level a little or a lot as the case may be.

I’m exhausted both physically and mentally, my body aches and is craving sleep and my mind well maybe we better not go there. 

The thing is I know the life I have chosen to live could get scary, that adopting a child with such complex needs could take me back to a place of such anguish, fear and pain, I do understand this. 

Yet as I sit here in the hospital room after a few days of real fear all I am feeling is thankfulness. I’m so very grateful and honoured that I get to be by this little ones side when he struggled. So blessed that when he needed me I got to be there.  

I know some people do not understand my life’s choices, they see the risk, the pain and understandably they could never imagine putting themselves through it and I completely get that. I can honestly tell you that this week I was petrified. Yet even now as I still reel I know how lucky I am and I don’t doubt or regret my decision to adopt this little one. I am counting down the days till he is officially mine, my son, my heart, my world. 

Life is certainly going to be an adventure and whilst my life may be extremely different to others I am so very content, so very happy. 

And whilst I understand why people ask me “how can I ” my answer will always be “how couldn’t I”.

This boy may not have been born from my body but he certainly was born in my heart.