I wish more than anything that nobody else has to go through what we did.

But I hope that by telling it like it is, it may help somebody else who has experienced this kind of trauma, to feel less alone and less guilty (because no matter how much we tell ourselves it’s not our fault, we can’t help but take the blame for causing our children’s disability in some way).

And it might just help somebody notice the signs of pre-term labour. Because in my situation, I’m not sure the docs really thought the babies were actually going to arrive!

I was expecting twins and I knew there was a chance of them being early, but I had no idea what that really meant.

At 27 weeks and 2 days gestation I woke up at 5am thinking I had a leaky bladder. It didn’t seem like my waters had broken as it was just a trickle, but something inside told me to call the midwife. 

Plus I had a friend that had just had twins at 27 weeks, so I knew it could happen.

The midwife told me not to worry, but to come in to hospital to be checked over in my own time.

In fact I think they actually said “have a cuppa and wander in when you’re ready.” Very relaxed. So I didn’t worry too much.

A couple of hours later, after the initial lack of concern, my consultant confirmed that Twin 1 (my daughter) had ruptured her membranes and it was amniotic fluid leaking out, not urine.

After a scan, they told me they would try to hold off labour for as long as possible (hopefully several days or even weeks) as the fluid was only leaking slowly and was replenishing itself.

All very surreal, but I was being told not to worry so I tried not to.

Skip to a few hours later and I’m having huge contractions! But nobody believed me. They said the monitors didn’t show I was in labour at all.

HOLY CRAP! They were beyond measure. But having never had a child before, I presumed I was just being a wimp and it would pass.

They did however give me steroids (to help bring on the babies’ lungs, but they were very reluctant to do so as they still didn’t really think I was in labour.

After a few more hours I told a very nice nurse that popped in to check on me that the paracetamol I had taken really wasn’t helping (as politely as possible) and she looked at me and said: “Don’t worry. I can see that this is getting more complicated. I am going to speak to somebody and get you transferred. You can’t have these babies here! (they couldn’t take pre-term babies before 30 weeks at my local hospital).

Ok, so if I’m honest, I really started to feel a bit shit by this point and this was the only person who seemed to understand what was going on.

I was worried.

Skip half an hour or so and I’m in an ambulance that is winding in and out of heavy traffic with sirens screaming, having mega contractions every few minutes, whilst holding a sick bowl. (The sick bowl wasn’t for me, it was for the midwife – she got travel sick going so fast in the back of the ambulance! You can imagine my joy!

Arrive at new hospital (famous one from One Born Every Minute). Tell them straight away there is no chance they are getting me on telly…..to which they reply: “Don’t worry. You’re not in labour! You won’t be having any babies”.

Me:“Then what the blinking hell are these contractions all about then?!?!? And the blood that seems to now be pouring out of me? I might be new to all this, but I really don’t think these babies are staying inside!”

Or words to that effect!

Skip a few more hours, a bit more pain and various medical professionals telling me I’m still not in labour, the doc says he’s going to give me some sleeping pills (I think it’s about midnight at this point and this has been going on since 5am).

Then he says: ”Do you think I should check your cervix? Just in case?”. They hadn’t done so at all up ’til now through fear of giving me an infection.

Me (politely): “Um, well I haven’t done this before, so what do you think?” “OK” he says. “I will just take a quick look.” (Doctor goes downstairs…then has a mild heart attack).

“I can see hair”, he says to the midwife. And he wasn’t talking about the fact that I clearly wasn’t prepared for being on such display that day!!

Cue more panic. Particularly from me. My little girl was on her way out!

After a few minutes, they decided that there wasn’t a rush, they could give me an epidural and then I could try to deliver the babies naturally in theatre.

So the anaesthetist gets me ready and performs the epidural.

I am shaking like a leaf by now and it makes it tricky for them to get the (giant!) needle in. But they manage it. It doesn’t work. (FFS! Why me!??!). I can still feel and move everything below the waist.

Then all hell broke loose.

Twin 1 (my little girl) had made lots of room in my womb now that she had decided she wanted to be delivered and so Twin 2 (my son) managed to do a somersault and knot his umbilical cord. His heart rate plummeted.

It was like when you are on a plane and you constantly look at the cabin crew when the turbulence hits, to make sure they don’t look worried.

Well I was doing this with the docs and they were PANICKING!

They were shouting, swearing, running about…

My husband was rushed out of the room to get changed for theatre.

I was wheeled at warp speed down a corridor to the theatre where they tried to calm me down to give me a General Anaesthetic.

They gave me something to drink and pushed down hard on my throat. I think that was the quickest way to knock me out in an emergency and not just to shut me up, but I don’t know for sure.

That’s the last thing I remember. I was out. The babies were then born by emergency C-Section pretty quickly.

In fact the midwife told me afterwards that the doctors had already started cutting me open before I was under (this makes me feel a bit sick) so I presume the epidural had finally kicked in.

When I woke up about 3 or 4 hours later I was violently shaking (result of the anaesthetic) and had no babies.

They were in Neonatal Intensive Care and I had no idea if they had survived or where my husband was.

Finally somebody came over to get me another blanket for the shivers and explained that the babies were both alive, but that my little boy did “have to be worked on”.

At this point I didn’t really know what that meant and I was too scared, too cold and too exhausted to ask any more questions.

They told me they were both being ventilated and were in incubators and they weighed around 2lbs each.

Then my husband came in and I really only remember crying and begging him to tell me they were ok. The doctors asked if I wanted to go and see them, but I still couldn’t get out of bed as the anaesthetic, along with the shock and section, meant I couldn’t physically move. And I was so scared of seeing them and not being able to cope.

So my hubby went and took a photo of them both for me.

Nothing in the world could have prepared me for seeing those photos.

They looked so poorly and helpless.

But in a few hours time, I was going to see them and I’m glad that I got to see a photos first to prepare myself.

They were even smaller in the flesh than I had imagined, but at least I was already prepared for all the wires and monitors and that really helped me get a grip.

As a result of pre-term birth and the lack of oxygen that he suffered whilst his cord was in a knot, my son has a severe physical disability (Cerebral Palsy, spastic quad).

And I do find myself wondering if I had shouted a bit louder, if I had asked them to check my cervix, if they had realised what was going on sooner, maybe, just maybe, he would not have suffered the brain damage that he did.

Or maybe he still would have. I will never know.

I try not to think about that.

I try to think that it could have been so much worse. I could have lost him, or both of my babies.

And so I thank those panicky doctors for getting them out before something worse happened

So how do you deal with it?

For me personally, I’ll be honest.

It depends on my mood, how I process those sort of comments or questions at any given time.

My response and feelings vary, which I think is only human. I like to think of myself as a positive person, a ‘glass half-full’ kind of gal.

However, at times, I’ve taken people’s words very personally and harshly.

I find myself feeling defensive and maddened at what they’ve said about my daughter.

Yes… she does have more than her fair share of disabilities, and it is sad that she can’t do many things, but you know what?

She is MY precious little girl. She is LOVED immeasurably.

And she is HAPPY!

Another approach I’ve taken is to tell myself that the person directing the comments means no harm and is merely ignorant when it comes to people with disabilities and special needs. 

They simply do not know how to interact or what to say, so I should cut them some slack.

Maybe try to educate them a bit.

They’ve probably never known someone who is deaf with cochlear implants or seen a child getting a tube-feed.

So I take time to talk

That is, if they want to take the time to listen or if they really care to learn about our life.

I would say I’m pretty good by now at reading people’s non-verbal cues and interpreting tone.

I won’t waste my time offering information if the person seems bored or uncomfortable…

Being a mother of a child with multiple disabilities has made me more sensitive in how I interact with or start up conversation when I see another child with visible issues.

I don’t awkwardly and quickly avert my eyes or turn away when I see a kid who looks blind or is ambling in his walker.

I try to be friendly and offer a smile.

I may comment to his parent/ caregiver on how well the child is doing in his walker, or how cute her hairstyle is.

 So I’ll try to say the right things.

Things that I would like to hear, as a special needs mama.

And I’ve learnt that sometimes, you just may not have the right words.

You might be stumped.

But that’s OK.

Patrick, my middle school child, sat in the kitchen, reading the newspaper and drinking his French Cappuccino.

I was perusing Facebook, making sure that I had not missed anything newsworthy overnight, like a funny cat video. Ouch. It was not a funny cat video.

The latest title from Ellen Seidman’s “Love That Max” blog caught my eye: “Let’s have special ed students do the football team’s laundry. Wait, what?!”

Maybe this is not going where I think it is…

I read the first paragraph: “Sometimes, you read or hear about something done to a child with special needs and all you can think is, How is it possible anyone could think that’s OK?” Yeah. That’s where it’s going…

“Do you know if Mrs. Locke’s class still washes the basketball teams’ uniforms?” I asked Patrick.

“I guess so, why?” Patrick asked. When Garrett was a student in Mrs. Locke’s special ed classroom, he washed the boys and the girls basketball team uniforms….

…and I thought it was OK.

Ellen’s blog was a response to another mom’s story. Maybe it was Ellen’s opinion and no one would agree with her.

I glanced through her followers’ comments and words like “menial labor” and “subservient” were repeated. Thirty comments and only one mother defended the idea.

“I was just reading about other special needs moms who do not think it is appropriate for kids like Garrett to be washing the athletes’ uniforms,” I told Patrick.

“Isn’t that the kind of job he’s going to have someday? Besides, he loves to help people.”

“I think they are bothered by the fact that your class doesn’t have to wash the laundry.”

“Well, my class doesn’t get to go horseback riding!” It’s true. Patrick’s class does not leave the building to go to hippotherapy.

Patrick’s class does not have aides or a sensory corner. And Patrick’s class does not do the laundry for the basketball (or football!) team.

Maybe it’s just me.

Have other parents complained at our school?

I reached out to Katie Locke who still teaches the class Garrett attended in middle school. “I feel like a lot of what goes on in my classroom is because I have parent backing,” she said.

“My students enjoy and take pride in doing the laundry, as well as other life skills. My students probably learn more from me of these skills than the extended standards.”

Katie explained that the team brought the uniforms to the laundry room (in a basket!) after the games; and her students went there to wash and dry them.

“This also taught the students some independence,” she said.

“The students loved leaving the classroom, even if it’s just down the hallway, to check on the laundry.”

I asked her about the argument that doing laundry was not teaching academic skills.

“We were most definitely using math skills,” she responded.

“The boys’ coach liked the uniforms stacked in a certain order and then laid out by numbers. The girls’ coach wanted the uniforms hung in the locker, which required the students to match the uniform numbers to the correct locker. The class also washed the towels from the kitchen and would return them folded and ready to go.”

The year Garrett was in middle school, his class was recognized at the last basketball pep rally

The team presented the class with school t-shirts and thanked them for a job well done.

“I was not at all offended or embarrassed for them,” Garrett’s bus driver, Heather Fosnaugh, recalled that pep rally. “My heart was full because they were happy and proud of themselves for doing their part and being part of the team.”

Below is a photo of Garrett’s middle school class wearing their shirts. My son is holding the pan of brownies and he appears to be quite proud of his place in that classroom.

I shared Ellen’s blog on Facebook. In it, she asked two questions:

1. “What message does it send to these kids that they’re cleaning their peers’ dirty clothes?”

Answer from Lisa Mariano, mother to a toddler son born with Smith-Magenis syndrome: “I think it totally depends on the kid. If it makes the kid happy and he feels good about himself, which I would think it would in most cases, then it’s great.

I suppose if there was a high functioning child, who perhaps wanted to but was unable to join as an athlete, it’s possible he could feel like it’s degrading.”

2. “What message does this send to the football team and the rest of the student body about them?”

Answer from Kristy Hamilton, mother to a teenage daughter born with Smith-Magenis Syndrome: “I know if my daughter was in charge of washing and preparing the uniforms, she would be over the moon.

It would also teach the typical peeps that special needs people are valuable and worthy. These typical peers are the future and are the potential business owners.

Who knows the seed this will plant in one of their heads? While Isabella is more like other kids than she is different, she is different.”

We live in a very small school district. It’s town where you go to school with the custodian’s children.

He is referred to as “Mr.” And if someone overheard you say his job was “menial labor”, your mom would know about it before you got home.

If asking my son to do these jobs is insulting, what message are we sending to ALL our students about the adults who do so for a living?

It has been three years since my son, now a sophomore, was washing team uniforms in middle school.

He does not attend high school games because the noise and crowds over stimulate his sensory issues.

However, his classmate Matt is an all around sports fan. I spoke to his mother, Lisa VanWey, about the laundry duty our boys shared in middle school.

“I am surprised by the backlash,” she told me. “I absolutely think that washing the teams’ laundry was a positive experience.

We can try to teach these life skills at home, but Matt is more motivated by his teacher and classmates. He loves to help people.”

Matt is a regular at most sporting events and Lisa believes that those friendships were made during the middle school years.

“I feel we can trust the football players. Sometimes on game day, the players will want to run to Subway after school. They will text me and ask if Matt can go with them.”

I spoke to one of those football players, Josh Strohl, and asked him what message he thought administrators were sending when Matt and Garrett’s class washed table tops and other custodial type duties around our school.

“What message do you mean?” he asked. “Do you, or the other guys on the team, think the kids in Matt’s classroom are your servants? “Um, NO!” He was insulted at the insinuation.

“Why? Because they have disabilities?”

“Well, that…but mostly because the kids in Matt’s class have washed other students’ dirty uniforms.”

“No. Matt likes to help. And not just bringing us water and stuff at the games. If we lose, he makes everyone on the bus feel better on the ride home.

He’s always in a good mood and you can tell he doesn’t want you to be sad.

Matt rides the football team’s bus to away games. He helps with water and whatever else is needed.

At the fall sports banquet, the football coach recognized Matt. He said that Matt started out as a manager, but ended the season as a team mate. It’s not just the football team that treats Matt as an equal.

This year, the basketball team voted Matt the most valuable player and presented him with a trophy.

So, what message have the parents, the teachers and the coaches sent to the athletes about our special needs children at Northeastern High School?

Franchise Photography captured that message in the photograph of Matt, aka Captain America.

Without pause you continued on. You gently rocked the wheelchair into a safe position to take it down the ramp and out of the vehicle, mindful of your little one’s arms and legs.

Raising the ramp with one hand and holding onto the wheelchair with the other.

You walked around to the other side of the car where I watched you unload the other half of your heart…your youngest child waiting patiently for you to free him from his seat.

You braced the wheelchair with your leg so it didn’t inadvertently roll into the street, while lifting your other child out of the vehicle.

You reached for your purse, one grocery bag, and a bottle of hand sanitizer that you placed in your pocket.

Holding one hand of one child and pushing your other son’s wheelchair with the other, I caught you briefly recognizing your wound, and although I’m sure it was throbbing you carried on as if nothing had happened. 

For a moment your eyes caught mine.

My eyes holding back the tears that recognized so much of myself in you.

For I too, am just like you.

Temporarily disguised as just a person on the street corner, my special needs life waiting for me at home.

I wanted to approach you to say hello, but I could see your determination and focus and knew that I would only serve as a distraction from your shopping mission.

I wondered what you were rushing into the store get; a carton of eggs, chocolate pudding for your children, and a specific brand of apple juice – the only one that your child with special needs would drink – knowing that your one small bag could only hold a handful of essential items.

I was walking to my car in awe of another strong mom, when I turned back into the store.

A flower display not far from the entrance with a handful delicate flowers –  daisy mix with pink carnations and a single rose caught my attention.

A bouquet card lay in the middle.

I made my purchase and quickly filled out the card:

“A Special Needs Mother’s Love is the fuel that enables a normal human being to do the impossible. 

Happy Mother’s Day,

Love a fellow Special Needs Mom”

I left the bouquet on the windshield of your car, hoping that it would bring you sunshine in a day that is often filled with a balance of difficulties and joy.

Every now and again sometimes we just need someone to see us, to know we’re not invisible and we’re not walking the journey alone.

I cannot profess to ever even considering becoming a poet – I know nothing of syntax, verse, iambic pentameters and such – I mean heck – my poem doesn’t even rhyme!

In fact I would go as far to say I have probably disgraced poetry and all it stands for!

Many people will have been met with the “Welcome to Holland” poem up on starting this special needs journey; and I know it can be subject that sparks many debates and unfurls a whole host of different opinions.

For me personally, I loved it. I know that others that feel very differently.

But I would like to share this with you because I think it conveys a lot of what we all go through at the start of the special needs parenting journey.

I hope it resonates with everyone.

A Poem about a very special Little Girl

Little girl – You weren’t meant to enter the world this way Little girl, how our hearts ached for you those first few weeks.

Awash in a sea of tubes, monitors and machines. You had us petrified, so anxious, so torn.

You fought hard.

You did more in those first few days than most of us would have to contend with ever in life.

You made it when they thought you wouldn’t.

Little girl – How we all cried, how we sometimes still do. Little girl, we sometimes still mourn what could have been.

Remember that day on the park, you sat on your mummy’s knee and we watched the children play?

All I could think is – will my little girl do that one day?

And then I told myself… even if she doesn’t, it’s more than okay. Because you’re here. You can feel love and happiness, and that’s what matters.

Little girl – When will all of these appointments stop?!

Little girl – You have no idea how many people are involved in your well being and care for you. This was never meant to happen and it’s hard, but we know it’s all to ensure you have the best future possible.

When people ask “how is she doing?” and “how are you coping?” I still don’t know what to say.

“She’s achieving her own milestones, she’s growing” or “I’m doing fantastically, we’re so happy” or “I cry a lot, there is a lot of pain and uncertainty in our lives”.

One day I hope it won’t be the latter.

Little girl – One day I want you to have a brother or a sister. When we have more money, more stability, when things are settled… in the distant future.

Little girl – They will adore you how we do. Mummy and Daddy worry – This world can be cruel, people judge and can be unkind.

We don’t want you to ever see that. We want it to be butterflies, flowers and smiles for you. We will do everything we can for that to be your reality.

Little girl – We try not to focus on what you cannot do. We want to celebrate what you can do.

Little girl – Remember when you learned to breathe for yourself? Remember when you first smiled? How about when you rolled on your side the other day? Remember how mummy always cries with happiness and gives you a big cuddle in excitement?

Little girl – Sometimes you are so grumpy. What did the car seat and pram ever do that was so bad?

Little girl – Will you ever be able to tell us?

So much we don’t know.

Little girl – You are our world. You keep fighting so we can.

Little girl – We love you so much.