Welcome to the Jungle

It’s a dark, crowded, murky, heavy jungle worth cutting your way through to find that beautiful clearing.

Types of parents, I guarantee you’ll meet within this jungle of Special Needs.

The Extreme Activist –

They are going to change the whole darn system. Nothing works. It’s all crap and the people who work in the system don’t give a crap about our kids.

No amount of paperwork is going to stop them from changing the world.

Be careful of these extreme activists, they mean well but they are fierce; you can’t half-arse help, you have to wholeheartedly help. Approach these parents with caution.

These are the parents most of us admire while hoping they don’t corner us to help picket the speech and language department on a wet winter’s day.

We have no idea where they get the energy nor time from but we secretly suspect they have a lot of home help.

The Advocate –

These parents are like the Extreme Activists, only much softer and calmer. They don’t believe the speech and language department should be picketed.

They believe in emails, phone calls and meetings with those who are in charge. These parents know exactly who is who within the system.

They have an amazing ability to pause their own struggles and help you with yours. They believe help one child, help them all.

The Advocate lives within all parents of child with extra needs.

The Googler – (not to mixed up with the conspiracy theorist)

It’s easy for us all to become The Googler but we must be aware of the dangers of becoming the full time Googler.

The Googler is never without their phone, it is attached to their hand especially at meetings.

They are the ones who corrects the team when they use the now outdated term IEP instead of IP.

You know you’re not even close to becoming The Googler when you roll your eyes and think; sure it still means the same fecking thing.

The Googler, when given the chance will tell you what it is your child’s team are doing wrong. They will instill the fear of God in you if you stand and listen long enough.

They will make you believe that perhaps the private OT sessions you’ve been forking out for are nothing more than play therapy with no real results coming.

They will let you know what you are doing wrong regarding having trust in the state care provided for your child.

You need to ensure you walk away from them once you’ve discovered that they are indeed The Googler.

The Conspiracy Theorist –

These parents are somewhat similar to The Googler, except that they believe the government caused most of the conditions/disabilities our children have by insisting we vaccinate our kids. They believe our kids are different because our government tricked us.

They are not the same as anti-vaccinators, as they believe in vaccines, they just think the government picked one vaccine which caused our kids disabilities as a sort of social experiment.

The Googler and The Conspiracy Theorist are good mates who like coffee, chats and hanging out with the Extreme Activists.

The Anti Vaccinating Crew –

These parents are looking to blame. They are normally new to the special needs scene and have not been given enough information regarding the diagnosis their child has received.

They fall in with The Googler and sure it snowballs from there.

Surprisingly, they don’t really like The Conspiracy Theorist as they don’t believe only one vaccine could be to blame for their child’s diagnosis.

It’s best to just smile and nod when they tell you that you should not have vaccinated your child. They don’t like to be debated despite them telling you that they can debate it; just don’t.

The One With Tight Lips-

Oh yes, these parents are plentiful. They have all sorts of supports which meet their child needs. They have home help, home adaptations, a support worker, resource hours…the list is endless.

They will sit and listen to you complain about trying to figure out who your social worker is but not one word of advice will escape their lips as deep down they believe if they help you they will lose some of their supports.

Once you meet one of these parents you must learn to bullshit them. Leave them thinking you’re getting more support than them, it’ll drive them nuts.

The Dab Hand –

These parents send you emails, phone numbers, a directory of who is who as they’ve been in this jungle awhile and hate the fact that nothing changes.

If you don’t know how to access supports, home help… these are the parents that along with The Advocate, will leave no stone unturned to help you – the reason they do this – it’s simple, they know the stress the system can cause so they try to ease that for you.

The Dab Hand isn’t to be mixed up with the Advocate, they simply pass on what they know and who they know to you when you ask. They share their experience and what different route they would have taken had they known then what they know now.

The Ostrich –

These parents are struggling and don’t really want your help. They would rather be left alone.

They are searching for second opinions and third opinions and paying a lot of money to be told over and over again that ‘Johnny’ is ‘different’.

They find it hard to accept and don’t feel like they belong in the jungle with you. And that’s OK.

Don’t let them bring you down, they will eventually see ability before disability. Pat them on the back and move on until they begin a conversation. It’s important to mind yourself through this jungle too.

The RubberNecker –

Ah they have their heads stuck in everywhere. They know you before you were even introduced. They’ll be chatty, friendly and full of questions regarding your child and services.

Be careful, they are comparing what services you are getting to what they are getting and are already composing a strong email to the same service provider using YOU as the reason they are emailing.

You can tell they are The Rubbernecker as they won’t willingly share the same information they are asking from you, not unlike The One With Tight Lips, eh?

The One Upper-

Ah yes, The One Upper. They want to hear your story, so they can tell you theirs. Theirs will be worse. They will have had all the issues and trauma you will have had but theirs will be worse.

Be careful of these parents, they make you feel ‘bad’ for saying you’re struggling.

They will make you think that you shouldn’t feel a certain way. Don’t let them.

Smile and walk away. Go and sit beside The Advocate or Dab Hand.

The Happy One-

Yes, these parents exist in this journey.

They are normally The Dab Hand too, but not always.

They have been there, done that and can now see the humour in most of it. They recall stories about their own journey which will make you laugh, cry or stare in awe of them.

They are extremely approachable and helpful. They listen to you and comfort you as best they can.

They remind you that life is what it is and we all might as well get on with it. They are full of life and fun yet can be serious when they need to be.

They also know The Advocate and The Dab Hand quite well and will introduce you to them. They will let you know who is who within the parenting group.

The Politically Correct One –

These parents are quite serious and take the words we use when describing our kiddies very literally.

It is easy to offend these parents by using words that they don’t agree with.

They are not shy of telling you that ‘differently abled’ is much more socially acceptable than saying ‘disabled’.

And maybe it is, but most of us have a lot more to be concerning ourselves with rather than what words we use.

However, we all have a little bit of The Politically Correct One in us, even if we don’t like to admit it.

For example, imagine someone referring to your child as a ‘R’? Yep, we all turn into The Politically Correct One along with The Extreme Activist right there and then!

So, there you have it, just some of the parents you’ll meet along in the jungle. Some will help pave a path for you while others will run ahead and not look back.

Is a Diagnosis Really Important?

Well, yes. But why? Why is it so important that a child is given a diagnosis when they have disabilities when all you hear from people is that a label won’t define their child?

In fact, I say it myself!

My son has quadriplegic cerebral palsy but it absolutely won’t define him, despite his disability he does not “suffer” and he is the happiest little boy and brings so much joy to everyone’s life’s around him!

But if someone told me that a diagnosis didn’t matter then I would absolutely argue that it did.

My son wasn’t diagnosed until he was over a year old and as a parent, the worry I went through before I knew that he had cerebral palsy was exhausting. Exhausting maybe isn’t the right word but that’s how I felt most of the time!

The battle to get answers takes almost everything out of you and you just want to scream at people when they say “does it really matter??”

Of course, at the time you probably say something along the lines of “well no I guess not, as long as their happy!”

However, that’s not true at all because not knowing is absolutely heart-breaking. Your child isn’t reaching their milestones or maybe acts in a way that you know isn’t right but no one knows why.

You want the professionals to be doing more to find out what’s going on but there always seems to be a delay in the research with this.

Just as frustratingly, others don’t seem to understand your need for a diagnosis, because it doesn’t change the child does it?

Other than a doctor giving your child a label, which no one seems to want anyway so… it’s confusing right?

And I think it’s something only parents of children with disabilities or additional needs will fully understand.

Because when your child finally gets that diagnosis, all of a sudden you feel less anxious wondering “maybe it’s just me? Maybe this is normal? But I know it’s not!

Is it something I’ve done? I wish I had an answer for people when they asked me what is “wrong” with my child”

Also, the care plan can totally change! Medications can change and referrals can be made.

Before my son was diagnosed he was seeing no one other than his paediatrician.

After his diagnosis his paediatrician changed, he seen a physiotherapist, occupational therapist, play therapist, portage worker, speech and language therapist, orthopaedics… the list goes on.

See how that diagnosis mattered?

There are still many families who don’t have a diagnosis and I honestly hope you find answers soon, I had a year of not knowing and I couldn’t bear to think what I would have been feeling had it been any longer.

So next time you tell someone that it doesn’t matter if their child has a diagnosis or not, please don’t because it really does.

Spreading Joy and Celebrating Ability on Halloween

My husband and I became foster parents soon after the birth of our first son.

Our family rapidly grew to a beautiful mix of wonderful littles who also happen to live with autism, food allergies, feeding tubes, wheelchairs, relational/attachment challenges, extreme anxiety/panic attacks, and the list goes on and on.

The unique needs of our children, coupled with the fact that we don’t appreciate the creepy aspects of the holiday, meant that we would need an out-of-the-box approach to Halloween.

Ignoring it completely seemed wrong because some of our children had knowledge of the holiday from previous homes and were looking forward to a celebration.

We felt it was important to find a way to acknowledge a day that had been special to them in previous years.

We did know that we wanted to take the focus away from darkness, fear, and the things our children are unable to do, instead focusing the day on fun, safety, and the spreading joy.

These concepts blossomed into a tradition that began last year and I hope continues in our family for many years to come. In the days leading up to Halloween, our family spent time baking cookies, coloring handouts, and creating fun costumes.

On Halloween day, we loaded up our van and headed to the local nursing home. Our sweet kids delighted the nursing home residents by visiting them one-by-one, showing off their fun costumes, and delivering them a special hand-colored card and yummy cookie.

Our children with food allergies and feeding tubes did not have to be excluded from candy and treats, our kiddos with relational/attachment challenges were not being taught to approach stranger’s doorsteps, our little one with autism did not have to obsess over what candy she would or would not receive, and there weren’t any tricky curbs, porch steps, or broken sidewalks to navigate with wheelchairs.

More than anything, our family was focused on how we can show love to others instead of focusing on our own gain and this caused joy to overflow from every angle.

However, just to make sure the experience was complete, we did hit the grocery store on the way home and let each child pick out a special treat of their own.

On a holiday that can tend to be focused on so many of the things that my children are afraid or unable to do, my family found a special way to celebrate our uniqueness and ability to bring joy to others—and have a whole lot of fun doing it.

Let’s Trick or Treat

Special needs parents, more so than anyone, know that special needs come in all forms. Some are very minimal, barely recognizable by the naked eye. Others are so severe it impacts your every daily function.

Our family falls somewhere in the middle . . . severe enough to be noticed … it’s hard not to see the wheelchair, but we have been able to find our own kind of reasonably normal daily life.

That being said though, this time of year always brings up the question, what do we do on Halloween? And I know we are not the only special needs family to wonder this.

I’m a big holiday Momma, and we celebrate all the holidays in our household (Halloween, Thanksgiving, Christmas, Valentine’s Day, 4th of July).

I feel like they remind us to stop a few days out of the year and have fun.  And as a bonus, the holidays usually bring us close to family and friends we might not have seen in a while.

We decorate our house for major holidays and there is always good food involved. I enjoy dressing our daughter up in holiday attire, and I can remember how excited I was the first time we bought her first Halloween costume. It felt … NORMAL.

Unfortunately for us, a lot of our holidays have been accompanied by sickness; Halloween included the stomach virus the first year and RSV this past year. On top of that, our daughter does eat much by mouth and has a lot of physical limitations.

So, every year we tend to have this struggle, if she is even well enough, do we take her out and go trick or treating?

In the back of my mind I know this would not even be a question if she did not have special needs. But still in the past the answer has been no.

However, not going trick or treating creates an internal struggle for me because I am a firm believer in inclusion despite a person’s limitations. Our daughter attends a school where inclusion is just the norm.

So, when she is at school or attending school events, we never worry about whether people will look at her funny or wonder why we brought her.

But going door to door in our neighborhood would be a different story, and so we have yet to embark on this adventure. Maybe it is fear or just uncertainty that tends to keep us inside on this holiday. I’m not really 100% sure.

I try not to focus on our child’s limitations, but they exist whether we dwell on them or not … that’s just reality.

So, what do you do when you have a child that is not physically able to ring the doorbell or say trick or treat; when they can’t reach for the candy bowl or say thank you and walk away; when feeding issues limit their ability to even eat candy; when their costume revolves around what the wheelchair will accommodate?

Well to say the least, it makes trick or treating a bit discouraging, and it is easy to find a million reasons why sitting out this holiday might make the most sense.

And in years past we have let all of these reasons justify why we did not get out there and knock on doors with all the other kids.

After thinking about it a lot though, I believe it is time our family changed this and tried something new! When I let myself move past the negatives and really start to think about it, there are just as many reasons for why our daughter should go trick or treating.

We have tons of friends who love her and will welcome getting to see her in person in her Halloween costume; she loves being around people and the interactions will make her day; our wheelchair will make it easy to get her from house to house (and she can’t run off); we could design her costume to include her wheelchair.

We can record “trick or treat” on her big mac button and let her push it when people open the door; we can help her get a piece of candy and this will work on her reaching and fine motor skills; she will be exhausted by the time we are done and we all should get a good nights sleep; and since she can’t eat a lot of her candy, we get a treat as well.

I’ve learned first-hand that there are so many ways to talk yourself out of doing things when you have a child with special needs.

But lately I’ve been learning more and more that I need to find ways to include our daughter into things instead. Anytime we’ve ever forced ourselves to push through a social situation we thought would be difficult, we have found most often that it is rewarding and our daughter usually enjoys it.

What I’ve also realized is that it is us parents that tend to stress over these social situations way more than our kiddos seem to.

Ultimately, I’ve come to the conclusion that if we don’t get our children more publicly involved, especially at a young age, the world will never learn to see them like we do (amazing).

Please don’t think it is lost on me that some people just can’t do this. I know there are some conditions that merely getting out in public puts a child’s health at risk or exposes a child to sensory overload. I’m a firm believer in parental intuition, and parents know best in these type situations.

My thoughts are merely for those parents who have ever sat out something because our children are a bit different and don’t fit the norm. I certainly can’t judge because I’ve been that parent… more than once.

But I think sometimes we have to change our own point of view in the effort to change others hearts and opinions.

My most recent revelation in this special needs quest is that our daughter’s limitations should not hinder her from trick or treating on Halloween. Instead we need to use this night as an opportunity to embrace this life she has been given and share in the fun with our friends. So, for the first time since she was born, we are going trick or treating on Halloween!

Halloween and Children with Additional Needs

Halloween is a time of the year that many children really look forward to, a time for fantasy and fun, a time for dressing up and scary stories, a time for ‘trick or treat’ adventure and lots of sweets!

The marketing around Halloween seems to ramp up to even greater heights every year, with major supermarkets dedicating whole isles, sometimes several of them, to their Halloween merchandise.

Advertising supports this with lots of TV adverts featuring ghosts, ghouls, pumpkins and spiders’ webs.  Then there’s the BBC Strictly Come Dancing ‘Halloween Special’!

But while this is a fun time of year for many children, it can be a really difficult time for some, including many children with additional/special needs.

For them it can be a confusing, anxiety inducing, or even utterly terrifying time.

But it doesn’t have to be like that; if we stop for a moment to think about the things they might find hard and how to put things in place to help them, they can safely join in the fun too.

So, what are some of the things about Halloween that children with additional needs can find hard:

  1. Stranger Danger?

We tell children all year not to talk to strangers, then on one night it’s suddenly fine to go around knocking on strangers’ doors.  This can be hugely difficult for some Autistic children, for example, who are often very literal in their understanding and can be very confused by this.

Why is it OK to speak to strangers today but it wasn’t yesterday?  What has changed?  What will the rules be tomorrow?  Why?

  1. Fake or Real?

The more garish dressing up can be genuinely terrifying for a child that struggles to tell the difference between fake and real.  Increasingly, we’re seeing dressing up outfits becoming more realistic with fake gore that makes people look truly terrifying.

When that line is crossed for a child that believes that the person really has hideous injuries or has been turned into something evil, theirs is the terror that is real.

Cue massive meltdowns, sleepless nights, and recurring anxiety.

  1. I’m Scared Enough Already!

Talking about anxiety, some children with ongoing anxiety issues can find the whole business of going out ‘trick or treating’ very upsetting.  Surprises, scares, people jumping out, can all be terrifying.

If it’s hard to deal with the day-to-day anxiety that they face about going out on a regular day, ramp this up multiple times when Halloween is involved.

  1. What About Me?

Then there are the kids with additional needs or disabilities that don’t get invited to parties or to go ‘trick or treating’ because they are different.

Here’s another opportunity for them to feel left out, rejected and uninvited because they haven’t been included… again.

  1. Parent Problems!

It’s not just the kids.  Parents of children with e.g. ADHD may not find their children being given loads of sugary sweets very helpful when they are up all night with a hyperactive sugar fueled child!

There are loads of other reasons beside these, but there are also ways to make Halloween easier for children with additional or special needs so that they can join in too…

Here’s a few ideas:

Prepare them in advance, giving them a visual timetable of what is going to happen, how and when.

‘Prime’ some friendly neighbours who are known to your child and that you can visit safely with your child knowing that they won’t do anything too scary or surprising.

Choose less gory and blood-soaked outfits. It’s more about the dressing up than who can look the most terrifying and there are plenty of options to choose from.

Choose sugar free sweets, or better yet try some healthier snacks themed around Halloween (satsumas as ‘mini pumpkins’ for example).

If you are hosting a party, think about who might be left out and make sure you invite them.

Have fun but keep checking on how your child is feeling.

If they are struggling, have something that they love doing ready at home, so that you can easily return to that and help them have fun in a different way (carving pumpkins – they don’t have to be scary, making pumpkin mini-pies, decorating a jar to put a battery night-light in, apple bobbing, toasting marshmallows…)

I hope that Halloween is a spook-tacular success for you all this year, especially for those of you with children with additional needs!

The Beauty of To-Do Lists

One Friday afternoon in the summer holidays a friend asked me if I was free to meet for a coffee and a catch up. This worked out very well for me, as I was heading into town to take Freddie for his swimming lesson.

My friend, like all my close friends, understands that wherever I go Freddie usually has to come along too; she left the choice of venue to me for that reason.

My friend also understands me very well, too.

We were already sitting at a table in the coffee shop when I realised that, in my flustered preoccupation with getting us out of the door on time complete with swimming kit, money and change for the locker, I had forgotten to pick up Freddie’s magazine and pens.

My friend reached into her bag. ‘I got these for him, is that ok?’ she said, pulling out a little notebook and a packet of small pencils. See what I mean – she obviously knows me very well!

Freddie doodled happily while we chatted, then, after a while he said: ‘Mummy, write now and next.’ A few questions revealed that what he apparently wanted me to do was write down all the things we had to do that afternoon, in the order that we had to do them.

So I broke the required sequence of events down into small steps and wrote each step on a separate line.

It went something like this:

Finish our drinks

Leave the coffee shop

Walk to the swimming pool

Get changed

Swim with Sam (his swimming instructor)

Get changed

Walk home

He seemed quite happy with the list, and when we finished our drinks and started to pack up our things, he put a tick on that line.

We said goodbye to our friend, put another tick on the list and headed off to the pool, keeping the notebook and one pencil handy so we could tick each thing off as we did it.

Freddie struggles with the transition from one activity to another, and with routines that require him to complete a series of different tasks one after another in quick succession. At the same time, though, he loves routines because they are predictable and help him make sense of things.

He is a lot less anxious, and therefore less likely to be difficult or uncooperative, if he knows what will happen ‘now and next’. For this reason we do have a number of nicely printed and laminated visual schedules around the house.

A lot of parents, I know, produce fantastic visual resources of their own; but as a family we do not seem capable of owning a printer for more than a couple of weeks without breaking it beyond repair (or without someone becoming apoplectic at the cost of ink cartridges every time we use it), so most of our schedules were made for us by the LD nurse from CAMHS.

They are fine as far as they go, but they do not cover every eventuality, just the basics like the morning and evening routines. Because they are aimed at encouraging predictability and consistency, pre-made schedules can be inflexible

Sometimes in life changes have to happen, however much we try to keep things the same.

For the time being our ad-hoc, slightly Heath Robinson handwritten ‘To Do’ lists are suiting us very well.

They allow Freddie to ‘see’ what will happen ‘now and next’, but they are flexible enough to allow for change – both day-to-day (say, if we have an appointment) or even hour-to-hour (I suddenly find I have no choice but to run an errand on the way home from school).

The tick box on each line makes it as interactive as the pre-made ones, which have Velcro-backed pictures that are moved from one part of the chart to another as the task is completed.

I only list a few things at a time, so that Freddie doesn’t get overwhelmed.

We write the list together, talking about what needs to go on it. I have to be very precise in what I write, though, and it all has to fit on one line – Freddie is a stickler about things being ‘just so’.

This particular notebook has a picture of a spaceship in the bottom corner of each page, so we drew an alien in the ship and a speech bubble all around the page, so it’s almost like a game of ‘Simon Says’, only Simon is an alien who just happens to speak English …

No doubt there is an app that will do all this, but my phone is so outdated that it’s unlikely to be able to run it – and being a one-income family, new phones are pretty low on the priority list. This little notebook will fit in a bag or pocket, though, and it never runs out of battery. It also doesn’t break if Freddie throws it on the floor.

Come to think of it, compiling lists like this is something Freddie’s dad has done all his life – certainly for as long as I’ve known him, anyway.

Perhaps it’s a family tradition; one that I, a much more chaotic, spur-of-the-moment person, is only just discovering the beauty of.

5 Reasons Ethan’s Stepdad Rocks

1. He includes Ethan in everything. No matter where we are Steve ensures Ethan is able to take part.

I remember once Steve determined that Ethan wouldn’t miss out on the giant inflatable slide. I remember my response which was “Do you think we can do this?!”.

Steve was adamant we could!

I’ve never laughed so much getting up to the top of that slide! The steps were wobbly and sunk down as we walked on them. We passed Ethan between us and got to the top. Funniest thing was, Ethan didn’t even like the slide!!

Needless to say this hasn’t stopped him trying and since then we’ve been on tractors, soft play (that was another slide incident!), flying helicopters and bouncy castles to name a few.

2. He doesn’t see Ethan as any different to any other child. He doesn’t see why he should be treated any different as he’s the same as us.

Ethan gets the same treats as his sister even though he’s dairy free or he can’t play with the rubbish toy out the machine.

3. He gives the best hugs!You can just see Ethan light up when he’s in his arms.

They are thick as thieves when they are together!

They snuggle and fall asleep on the sofa, they watch Star Wars together and gang up on mummy!

Their favourite thing to do is wrestling! The sound of wrestling music can be heard throughout our house as Ethan’s carried to bed each night, followed by the roaring of his laughter.

Afterwards follows a short wrestling match where daddy usually wins and Ethan laughs his head off!

4. He is the first to leave work in an emergency.

He will no matter what he’s doing be there for his little dude.

He will be right by his side holding his and my hands. He is our rock and he provides us both with a shoulder to cry on and lots of laughs when we need cheering up.

5. He loves Ethan unconditionally. He goes through everything with Ethan daily

He sees him at his best and his worst. He never once gets annoyed and he just continues to love Ethan no matter what kind of day he’s having.

We could go on about how amazing he is, but we wouldn’t want to encourage his ego would we now!

Back to School Stress Outs

I.E.P.  504 Accommodation Plan.  SLT, OT, PT and Vision Therapy.  GERMS.  We escape all of this for ten weeks, every summer.  We still work on retaining skills over the break and work hard to battle regression; we NEVER STOP WORKING.

However, its relieving to feel the stress level and time demands eased when school’s out for summer.

While routine is vital in our household and I’m definitely glad to now be back in the swing of things, the end of summer is always somewhat bittersweet. That initial stress of back-to-school never gets easier.

Having one child with profound special needs in traditional public school, and one child on the Autism Spectrum attending an online homeschool program, our back-to-school experience is anything but typical.  In the weeks leading up to the return to school, it seems we always have a fight on our hands.

The fight to retain critical services and to remain in integral programs never evades us.  As a parent of children with additional needs, I always keep my boxing gloves on and I’ve learned to be ready for unexpected battles.

Homeschool became our best choice for my son years ago, when sixth grade began.  He transitioned to middle school and ZERO of his accommodations/supports were in place for him.  The ball was dropped and I refused to let him suffer because of that.  The result is a happier, well-adjusted ninth grader that loves learning from home.  There is the occasional stress-out for me when he’s struggling with Latin lessons because I’m clueless on the subject! Luckily, he has online teachers and virtual resources that help him succeed.

The first week back for my daughter is always a bit nerve-wracking.  We have the BEST teacher and she attends a wonderful school, but I find it tough every year to let go.  On the first day, her pink unicorn book bag is well-stocked.  Not with notebooks, pencils, glue sticks or paper…Hers is filled with diapers, orthotics, seizure medication, rescue meds, and calming lavender oil.  Essentials I can’t let her out of my sight without.

As I drop her off and walk away, I can’t help but stress out a little on those first few days of the new school year.

After living in our “bubble” for a season, and having limited exposure to crowds of people, I know it won’t be long until she catches a cold.  Weeks of good health, months without sickness will surely soon come to an end. That alone is reason to stress out.  There hasn’t been as much as a sneeze all summer.

We’ve learned to start working on building her immune system ahead of time and we cross our fingers in the months to come for continued illness-free days.

With one child away at school all day and one at home with me, we’ve all settled back into our routines fairly quickly.  The back-to-school stress-outs have calmed.  Even though we’re always prepared for unexpected bumps in the road, for the moment, everyone is content and happily thriving.  We’re all working hard and we look forward to a fabulous school year!

Once Broken, Now Strong

Its hard to imagine that one doctor’s appointment could completely break a person. On October 14, 2010, I walked into a Maternal Fetal Specialist’s office, happy and whole.

I walked out shattered, lost and wholly broken.  In the span of two hours, I had forever changed and would never, ever be the same again.

Anxiously awaiting my second child, my obstetrician recommended a specialized 4D Ultrasound during my eighth month of pregnancy.

I had zero complications this time around; I felt wonderful but was simply measuring small.

With a pink nursery nearly ready for my daughter and our hearts already deeply in love with her, we were not prepared to hear that anything was wrong.

Words that the doctor spoke to me and my husband after the ultrasound were completely foreign and cold.

We could not comprehend the meaning of “incompatible with life” and “lethal genetic disorder.”

We immediately opted to have an amniocentesis done; not to change our course of action, but to see exactly what we were dealing with.

We would have to wait several excruciating days to learn the fate of our baby girl, until we had the test results back.

From the ultrasound, we saw on the screen what couldn’t be denied…heart, brain, kidney and limb defects.

We also saw in great, defined detail, the beautiful child that we desperately still wanted with all our hearts…no matter what.

Days of agonizing waiting finally gave way to great hope.  The lethal genetic disorder our baby was thought to have was ruled out.

We had a shot at life, and that was all that mattered. We were told there would be more genetic testing to come and continuous monitoring of her tiny heart.

There were still many unknowns, but I knew I’d fight for her to no end.

We adjusted our sails and did everything the doctor said for the next month, until we finally met our perfect miracle face to face.

Her brain and heart defects were thankfully not life-threatening.  She was tiny, and did need very close monitoring.

After 21 days in the NICU, we were able to bring her home; our precious gift of life.

The call came from our Genetics doctor a few weeks later; it was confirmed that she did have a rare genetic disorder.

As we had been told by our NICU physician that her issues likely stemmed from an infection, the news of this diagnosis struck me like a punch to the gut.

The wind was completely knocked out of me.

There was no way to predict her future from this diagnosis, but we learned that most children with Chromosome 1q43q44 deletions gain only very limited independence.

As crushed as I was to receive this news, knowing her life would be filled with challenges, my child was HERE with me.

She had achieved the impossible upon taking her first breath, and I knew I’d do whatever it took to give her the very best life.

The compassionate voice on the other end of the conversation reiterated to me that she was still the same beautiful baby she was before we spoke.

His kindness during that turning point in my life has remained with me over the years.

In the beginning, there were many tears. Years spent soaking in all the information my brain could hold, and then striving to learn even more.

There are still tears today; but they flow less frequently now than at the start of our journey.  After nearly 8 years, I’ve grown stronger because of her.

Grief over things she’s unable to do, like walk and talk, does hit heavy from time to time.

However, I look back on how far we’ve come since her beginning and that grief quickly turns to gratitude!

I’m continuously learning.  From new therapy methods to alternative medicines – I constantly devour and process information that could potentially benefit my child.

I never thought I’d be a stay-at-home mom; a pro at dealing with specialists, therapists, medical equipment and seizures.

Having been given my precious daughter, and learning unyielding strength in the process has made me the person I was always supposed to be.

My heart has changed. Everything has changed.

As tough as it can be some days, I embrace this life and see incredible beauty around us that others can’t truly comprehend.

The touch of her tiny hand on my face, the love I feel when I hear her laugh, and the pride that swells in me watching her accomplish impossible feats makes all this worth it.

There’s no place I’d rather be.  I was once broken.  From that dark place, and because of her, I have become strong.