Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish

Insurance Funding Request

Did you know Firefly products may be funded by your insurance?

Learn More
Back to Firefly Blog

Five Things I Want for my Daughter with Complex Needs

Five Things I Want for my Daughter with Complex Needs

1. To know how much you matter.

You are loved, important and valued. There are days feel an overwhelming guilt that you aren’t with me. You go to school, and you go to respite.

When you aren’t around me physically, you’re one of the only things I think about.

Everything I do is with a view to making your life easier and more enjoyable.

I do my jobs when you aren’t there as much as possible so that when we are together I can enjoy you fully and completely. It’s not just me though - daddy feels the same.

Your whole family feels the same. In fact, our friends, and even people we haven’t met that know of your journey - they are all rooting for you and see your importance in this world.

You fought hard for your spot here on this planet - harder than most of us have had to fight.

There are people out there who won’t understand, but they don’t matter - you, and your happiness, do.

2. To not be defined by what you can and can’t do.

You are not defined by what you can and cannot do.

A wise lady once said to me “If you judged me on my ability to speak Mandarin… I’d look pathetic. But if you judged me on something I can do or can enjoy... That’s what it’s all about."

I’ve seen you  struggle amongst your peers to keep up, or even just to take part sometimes.

But with the right people around you, and with your sheer determination - none of it matters.

There are so many things mummy can’t do either, but there is plenty I can do. You are the same.

Not able to walk? We’ll get you a cool wheelchair to show off to your friends.

Not able to eat? So what… you have a formula that’s got better nutrition in it than any of us get.

You have learned to communicate without words and get better at it everyday.

You amaze me everyday with what you can do and the challenges you have overcome.

Through you I learned to take nothing for granted and to celebrate everything.

3. To be happy and understood.

My entire life pretty much revolves around meeting your expectations and needs. I spend a spend a lot of time ruminating, wondering, planning.

I want to know what makes you sad and what makes you happy. One day maybe you’ll use eye gaze technology to make sure everyone is aware of what you want or need.

But until then we will work tirelessly to make sure we hear you and read your expressions, sounds and movements.

There is a whole world out there that don’t know you how we know you. They might not know how to make you happy, so we need to teach them, and find ways for you to tell them.

It pains me to think of your eyes screaming something out to me, and me not interpreting you correctly.

You must get so frustrated with us.

If I'm ever not with you I feel a panic inside that maybe your needs won't get met, or if you're thinking I've abandoned you.

Sometimes you get so distressed for seemingly no reason - I hope one day we can get on top of that and we can figure out how to placate you.

4. To feel socially accepted and have access.

This is a big one. There are too many places we can’t go because of steps of lack of facilities.

The places we do go… sometimes we come across people who don’t understand.

I really hope that one day more people in the world learn some compassion and respect that people are different.

What makes us different makes us beautiful. You are beautiful and you deserve for everyone to accept you and provide access.

I've seen children stare, and even adults - unabashedly.

Let's stare back and smile and wave.

I've heard people tut when you have a moment of excitement and can't keep the squeals of joy to yourself.

I've seen other people be obnoxiously loud, and you struggle to cope.

One day we'll find the balance.

I don't expect friends round for tea, or sleep overs or a lot of the "typical" things I thought would happen before we met - I hope that we can build our own "norm" and traditions and that your crowd support and adore you how we all do.

5. To have no/minimal pain.

Every intervention or therapy you need - it’s a reminder of how hard you have to work to achieve a level of normality in life.

Recently at the dentist I had to help two people restrain you whilst they performed a descale and polish.

You were so distressed it’s going to take 4 sessions. I hated that you didn’t understand and thought I was helping these people torture you.

Everything we do is with a view to preventing pain, or surgery.

Too many times I've had to sign a consent form, or watch you fight against a cannula insertion not knowing why it's happening.

I see your muscles fail to loosen in the morning and spend time massaging your legs and helping you stretch.

I see you writhe in pain from your sore limbs.

I wish I could take that pain away.

No child or person should have to endure such pain. I wish I could take that pain for you.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann Brown

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

View Ceri-Ann’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 6 months on

Purchases on $99+

US Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of $99+:

No Interest if paid in full in 6 months on purchases of $99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 6 month period.
  • No interest will be charged on the purchase if you pay it off in full within 6 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00.
  • Individual items that are less than $99 qualify for special financing when combined for a total of $99 or more in a single transaction.
  • Multiple separate transactions of less than $99 per transaction cannot be combined to meet the minimum purchase amount.

Purchases of $98.99 or less:

Buy now and pay over time with PayPal Credit when you spend $98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • If approved, we start you off with a minimum credit line of at least $250. See FAQs for more info.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00. See Terms and Conditions tab for more info.
  • If you miss a payment your late fee could be up to $38, even less if it's your first time. See FAQs for more info.

Please wait...