Before I start this, I want to make it clear that I am a firm believer that when it comes to feeding your child, fed is best.

However that works for you, there should never be any judgement, expectation or opinion from anyone else.

I know so many new mums who have felt huge pressure which does absolutely nothing to pave the way for successful breast feeding and in fact in many ways has the opposite.

All I know is what worked for me.

With Sebastian, my eldest son, breastfeeding did not come easily and continuing was mainly down to the fact that I felt much more strongly about needing to do it than I thought I would.

It  was, despite a rocky start, such an overwhelmingly special and magical thing that instead of any judgment either way, I just felt incredibly lucky to have been able to do it.

Once it was working, I felt that he and I were connected in a way that I had never felt with another person.

Breastfeeding was part of an intense love both for my firstborn child and for motherhood.

I was 36 weeks pregnant with my second child when Sebastian’s blood tests came back abnormal, when Duchenne was suggested as the most likely diagnosis.

Leading up to Toby’s birth, I was plunged into a kind of grief that is difficult to articulate.

I felt heavy with darkness that threatened to overwhelm me. Despite my very pregnant body, I was empty in every other way. Having loved feeling my baby move within me, I then felt nothing but a numb, cold fear.

And my biggest fear was not that he would also have Duchenne, but that either way I would not find a way through the darkness to love him. I didn’t feel capable of it.

And then he was here. And a light flickered back on.

He latched onto my breast within minutes.

He arrived knowing me, and I knew him.

In feeding him, I felt the jolt of a purely physical connection which brought me back, of my body which had so failed to keep Sebastian safe giving his brother life. I clung to it.

The darkness subsided because only he and I existed in the times I fed him.

I could close my eyes and drink him in, drink in the simplicity and purity he brought to the world which no longer made any sense to me.

Breastfeeding him connected me to the love I felt for him which could so easily have been buried beneath the fog and the grief.

It brought my focus back to him when so much attention was needed elsewhere. My mind slowed and let my body be at peace, transferring all the love I had into him along with my milk.

So I will never pretend that breastfeeding can work for everyone, that it’s even an option for some people, that it isn’t painful, exhausting and challenging in many ways.

I promise you will wake up covered in milk on multiple occasions and that you will feel you have showed your boobs to more unsuspecting people than you’d like.

But I am so incredibly lucky to have been able to successfully feed both of my boys.

Both journeys fulfilled me in ways I hadn’t predicted.

But breastfeeding Toby during what was the hardest year of my life healed a little part of my shattered heart and cemented it to his.

I honestly believe it saved me.

How do we normally measure success throughout our children’s lives?  At school it is measured by how they score in tests and how their results compare to other children.

In sports it may be what team they make, what races they win or what dance exams they pass. In their social lives it’s how they interact with their peers and the friends they make.

We want them to have good morals, be kind, empathetic and make good decisions.

When raising children with special needs we have a different set of benchmarks.

It’s about setting goals and having strategies to meet them.

At school this includes having an Individualised Education Plan (IEP) that shows how the school programme will be adapted to them.

It records achievements, what supports are needed and what success may look like for them.

It’s about creating an environment where they can learn without sensory distractions and where they will be accepted and nurtured  Its about completing the cross country or length of the pool, not the place they get.

In fact even getting into the cold school pool is something to celebrate. This is how we measure success.

Therapy is always on our minds when we choose their out of school activities.

Finding what they enjoy so they are motivated to attend but always bearing in mind what will help them in terms of social skills, motor skills and providing some sort of physical fitness. This is how we measure success.

Attending a birthday party without a meltdown is a milestone to be celebrated. Carrying out self care, brushing teeth and brushing hair is another.

It is about being able to participate in family activities without getting overwhelmed and escaping without a tantrum . It’s when parents are able to relax without being on edge.

It’s when something isn’t pulled apart or broken.

Or when you haven’t had to intercept your child finding an escape route. This is how we measure success.

It’s about having friendships that are different from the norm. When no words need to be spoken to have a beautiful relationship.

Or when your best friends are much older than you but they make you feel accepted. This is how we measure success.

All successes are celebrated in our house.

We want all our children to be the best versions of themselves in whatever shape or form that takes.

 

With living in the North East, we have no family close by to help up out. Both of our families live in the North West, yet we are settled and happy in the North East.

Since having the boys, we have discovered a whole new meaning to family, because family is not just who you are related to, it is who is there for you.

The first new family we became a part of after having Rory and Alfie was our twin family.

We are part of a group with 8 other twin families who mean the world to us.

We all met at our antenatal classes and have been friends since, with our children having birthdays spanning over the space of 3 months, with Rory and Alfie being the oldest having their birthday in September, to the youngest set of twins being born in November.

It is a group I am so proud to be a part of and a group I adore.

Not only do we all talk every day, but we support each other and are there to offer words of advice, as well as to cheer each other on in everything we do. We love each other’s children unconditionally and have a bond that is unexplainable.

The second new family we became a part of is our nursery family.

When Rory and Alfie joined St Gabriel’s, we went through every emotion- excitement, fear, worry, wonder, etc.

Within a week, any reservations we had went away. We had looked at several nurseries before settling on St Gabriel’s, and we could not have made a better decision.

As soon as we started looking round the nursery, we knew it was the one for us. It felt perfect.

It was so welcoming, and the staff were just lovely, as well as having an excellent bond with the children they cared for.

And this love for the nursery and the staff has grown with time. All of the staff adore Rory and Alfie, not only because they are twins, but as tiny people in their own right.

Each of them has formed bonds with all of the staff there, not just their key workers.

They have fun every day and look forward to going. They are relaxed and cared for there, it truly is amazing.

Vaccination has been a hot topic here in the United States in recent months as measles cases are popping up across the country.

As of June 27^th, there have been 1095 cases reported, and no doubt there will be more.

State legislators have been introducing, and passing bills that tighten limits on vaccination exemptions and the people who disagree with vaccination have been extremely vocal in their opposition.

I have always been pro-vaccine, and I was honestly curious as to what made people so adamant; even militant, in their opposition.

So, I did some digging and found myself down a rabbit hole late into the night on a few occasions.

One of the most pressing arguments against vaccines has always been that they cause autism.

Despite the fact that this has been widely debunked, that fear has stuck with people over the last two decades.

I came across one website which featured a man wearing a red baseball hat with the words “Make Autism Go Away.”

It was designed the same way as the MAGA hats that President Trump supporters wear, and at first, that is what I thought it was.

Out of all the anti-vaccine stuff I had come across, this one affected me the most.

My 12-year-old daughter has autism. She was diagnosed at age 2.5, which is the average age of diagnosis.

This is also the time span in which children receive their MMR vaccination.

I have had people assume that her autism was caused by her MMR shot, but the truth is that she was diagnosed before she even received it.

We had put it off several times due to illness, so she was actually behind schedule on some of her vaccinations.

Besides being ableist, the “Make Autism Go Away” statement is a little deluded.

Autism isn’t going anywhere. Autism has always been around.

Leo Kanner first described autism in 1944, but since it had never been an official diagnosis before, it’s prevalence before this was zero.

There have always been people with autism, but they most likely were written off as “insane,” and I imagine many were hidden away or ended up institutionalized.

People with disabilities were frequently institutionalized well into the 20^th century.

In 1965, Kanner wrote that after he made his first diagnosis of autism, “almost overnight, the country seemed to be populated by a multitude of autistic children.”

Over the years, the diagnosis has evolved and broadened, which is one explanation of the uptick in autism cases.

Despite all the evidence to the contrary, there will probably always be people who avoid vaccinating their children for fear of autism, and a multitude of other reasons.

The anti-vaccination movement is relatively small, but they are loud, and the loudest voices can be quite persuasive, especially to those on the fence about vaccination.

I understand that an autism diagnosis is challenging and life is not easy, but making statements that people like my daughter need to “go away” because of something they have no control over isn’t helping at all.

Even if they are only talking about the diagnosis and not the person, the two are not mutually exclusive.

Educator, author, and professional speaker Chris Bonnello, who also happens to have autism has stated, “I don’t want to turn an autistic person into a non-autistic person. I want to help an autistic person who struggles to become an autistic person who doesn’t struggle.”

If only that charismatic energy that the people who preach against vaccination seem to emanate could be used to educate and advocate for people with autism instead of demonizing the diagnosis and using it to fear monger.

What a much better world it would be.

In the summer of 2015 I was pregnant with my second child.

We’d kept the gender a surprise which made it surprisingly difficult to choose a name, and without a clearer sense of who this small person growing inside me was it was harder to plan clothes and blankets etc. But that was okay, second time around I knew I didn’t need much more than a car seat, and some nappies and babygrows.

Like my eldest, this baby would co-sleep and breastfeed.

Breastfeeding hadn’t come easily with my first, in fact it had been rather difficult.

But I tackled it like I do most problems, I did my research, bought every piece of equipment I thought could possibly help and then turned all of my determination and stubbornness towards solving the problem. Which we did, and we (mostly) enjoyed nursing until he was 3 and a half years old.

I was still nursing him while pregnant with baby number two and I imagined that soon I would have two little blond heads nursing together.

After my previous experience I was confident and determined to be successful second time around. By this point I was an active member of my local La Leche League and had a brilliant support network should I encounter any problems.

So it all came as a rather enormous surprise when things didn’t quite go to plan.

Thomas arrived early one Thursday morning in October, but during delivery he had been deprived of oxygen and was born in very poor condition.

The first few days were very touch and go while we waited to hear if he would pull through. As most NICU mums do, I turned to the breast pump to stimulate my milk production while I waited.

Thomas was 6 days old when the speech and language therapist came to see us. I was so excited to see her and discuss how to begin breastfeeding directly.

Never in a million years did I anticipate what came next.

Thomas was born with no suck, no swallow, no gag and no rooting reflex. All the natural reflexes he needed to feed were completely absent.

She told me he would likely be tube fed for the rest of his life.

For me, this was the moment, the moment when I realised my life had already changed without me noticing.

There were a lot of tears cried that night, and in the days that followed as I grieved for the idea of a child that I had lost, for my life as I had known it, and for all the things I had dreamt of or hoped for for this baby.

Through it all I kept on pumping breastmilk. There was little else I could do for him at this point.

I soon resolved that I would continue to pump. It seemed like the most sensible thing to do.

I knew that breast milk promoted optimal brain development and contained stem cells, both of which seemed important for my brain injured boy.

It also promoted optimal eye development which could only be a good thing for his visual impairment.

I decided that I would express for him until his second birthday as The World Health Organisation recommends breastfeeding to age 2 and beyond.

Without a swallow Thomas was very vulnerable to aspiration pneumonia, especially as he had a particularly terrible case of reflux.

However, I also learned that breastmilk had protective factors here too. The good bacteria in breastmilk was less likely to cause a chest infection if aspirated, and could actually help neutralise any bad bacteria.

And of course there’s all those antibodies which are so helpful in the winter months especially.

It wasn’t long before the gruelling regime of expressing and feeding started to take its toll, while his reflux had him classified as failure to thrive.

His dietician struggled with not being able to accurately account for what was going in and she really wanted some thing with much higher calories.

We would have almost weekly conversations about introducing formula.

Family and friends would ask when I was going to stop, they saw it was a struggle and “surely he’s had all the good stuff by now?”

I was spurred on by the support of my husband and closest friends, online friends and my local La Leche League group.

In those early months, as I learned to care for my disabled baby, the only place I would venture out to was La Leche League, where the Leaders would cuddle my baby and feed me tea while I pumped.

As I grew stronger and more confident my resolve strengthened.

Although at the same time I felt stuck in a catch 22. As the months passed Thomas seemed unable to tolerate anything other than breast milk, and he didn’t tolerate that well as it was. 6 months came and went but unlike other babies Thomas was still on an exclusive milk diet.

We soldiered on past 12 months, stuck in the repeating cycling of expressing and feeding.

Finally relief came at 14 months when Thomas had his peg placed. Finally we could start to wean!

We started to introduce a blended diet, and before long I was able to start reducing his milk feeds and everything started to feel a bit more manageable.

I was still expressing twice a day for 30 minutes each but it was a lot easier.

On the morning of his second birthday I was resolute. I had done what I had set out to achieve. 2 years of breastmilk.

I got my pump out for one last time and stored the last of my milk at the back of the freezer as a keepsake.

I had a small frozen supply that would last us a couple more months so it didn’t feel sad, I was just delighted to pack the breast pump away!

I still carry some grief around not being able to feed Thomas directly. It certainly made meeting his emotional needs significantly harder.

But it is hands down the parenting move I am most proud of. It was a labour of love for my special little boy.

So for World Breastfeeding Week 2019 I want to do a shout out for every mum who gave their baby breastmilk.

Whether it was a few drops or several litres, whether it was directly from the breast or via a supplemental nursing system, whether expressed and given by bottle fed, or tube. I see your pride at the goals you achieved and I see your grief if it didn’t go the way you wanted.

I see your labour of love ❤