Naomi’s Story – Ordinary People with Extraordinary Lives Series

Original Interview, published May 19th, 2013

Have you ever wondered what it must be like to be a parent of a special needs child? Maybe you are raising a special needs child yourself and know firsthand the challenges that it can bring. Naomi, a good friend of mine, is a mother of two beautiful girls, one of whom happens to have special needs. We have gone through quite a few life changing moments together over the years. We planned our weddings at the same time and then became ‘Bump Buddies’ with our first babies, Saoirse and Amelia.  To our great amusement we found out that we were due our second child at the same time, so we became ‘Bump Buddies’ again with Fiadh and Nate who were born only one day apart.

When I decided to run a series of interviews called Ordinary People with Extraordinary lives I knew that I had to include Naomi’s story. I believe her words will help so many other parents who could be tearing their hair out right this minute. It’s only living the life that Naomi has, that you earn the wisdom that she shares here. And I can guarantee that once you have read her interview, you will not only have learned something new but also you will be as charmed with Naomi as I have been for years. She truly is a lovely person.

Naomi, can you introduce your beautiful family to us?

There’s myself, my husband Jason and our daughters Saoirse & Fiadh. We are your average Irish family except that our eldest daughter has special needs.

Here is a beautiful shot of Jason, Naomi, Saoirse and Fiadh

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What exactly is Saoirse’s condition Naomi?

Saoirse’s condition is called Lissencephaly. Its a rare and unfortunately life-limiting condition that comes with a lot of complications….seizures, feeding issues, pneumonia’s and many hospital appointments & admissions.

For more information on Lissencephaly (which affects somewhere between 500-1000 children worldwide), please visit http://www.lissencephaly.org

And for anyone who wonders how to pronounce Lissencephaly – this is the way I broke it down when Naomi first told me about Saoirse – Li-sense-seph-ally.

What impact does having a special needs child have on all the family?

It has a massive impact, especially when you first find out your child is sick. There are a lot of people & paperwork to deal with and meet. We have to juggle a lot of appointments both in the home and outside the home. We’ve all had to learn to do things that we never thought we’d even have had to think about before. There are sacrifices but at the end of the day you do what you have to do to keep your child happy, comfortable and at home.

Naomi, I’ve seen Fiadh and Saoirse together and they are so very sweet.  Tell us about their relationship.

Saoirse is aware of Fiadh but is unable to interact with her. Fiadh is still very young, but in the last while she is taking more and more notice of Saoirse and always gives her a kiss before bedtime. Fiadh is also very gentle with her and she rarely goes near her oxygen or feeding tubes.

How limited is Saoirse’s communication?

Saoirse is non-communicative but she manages to get her message across one way or another, for example she cries only if she’s in pain.  But we get to see her eyes light up when we sing to her or when we put her fave lip balm on.  That’s very special for us.

Have you thought about how you will explain Saoirse’s condition to Fiadh?

Fiadh’s still quite young and although she seems to realise Saoirse is different to her, I don’t think we’ll be explaining too much to her until she’s able to understand.  In the next year or so I’m sure Fiadh will start to ask questions so I’d say we’ll tell her that Saoirse’s brain is sick and doesn’t work the same way hers does. Something along those lines anyway but that could still all change again!

I know that each day is a new day with Saoirse’s health, but right now, how is Saoirse doing?

At the moment Saoirse is doing reasonably ok.  She had a rough few months from mid-September until Christmas 2012, with 3 hospital admissions for pneumonia & a tummy bug. As with all underlying conditions, Saoirse’s immune system is compromised so she is prone to picking up bugs easily and gets them 10 times worse than a healthy child.

This next question was a difficult one for Naomi so I really appreciate her honesty when replying.

Naomi, naturally nobody plans a special needs child but can you tell us what it was like for when you first discovered Saoirse’s condition?

There were many different emotions experienced at this time. Saoirse was 6.5 weeks old when she was rushed to a&e with seizures, after some tests etc they told us the horrific news a few days later. We were angry, bitter, confused, worried, and grieving. Grieving for the little girl we thought we had. We were angry and bitter about the fact that I had a fine pregnancy, nothing had been picked up on scans, whereas you have junkies every day who don’t give a damn having healthy children. We did ask ourselves why us at first but now its why Saoirse?  She didn’t do anything to deserve the life she’s been given and we’re here for as long as she needs us to look after her and make her as happy and comfortable as possible. What I found particularly hard was bringing her home from hospital after the diagnosis, it felt like I was having to get to know a new baby, cos the one I brought home from the maternity ward wasn’t the same.  She was though, we just didn’t know it. We had a lot of paperwork to get through in the early days to make sure we were linked in with the right people. We also were introduced to a lot of new people, mainly in the medical profession. It was a massive change to our lives as we knew it, and life will never ever be the same again.
However, if it weren’t for Saoirse we wouldn’t have met or come into contact with some wonderful people.

Sometimes at the end of a long day Naomi and I, together with some friends, will chat about our days.   We are ALL always in bewildered awe at how much both Naomi and Jason manage to fit into a single day.

So Naomi, can you tell us all what an average day is like for you all?

We’re all up by 7.30 am at the latest. Head downstairs and the night nurse (that we have 5 nights per week) who will report to us how Saoirse has been overnight. Jason leaves for work and then the nurse leaves about 8 and then I sort Fiadh out with breakfast and getting her dressed.  Fiadh then potters about while I get myself fed and prepare Saoirse’s medicines. If we have an appointment, if at all possible they will come to the house as that can take up to an hour or longer of the morning. Saoirse gets her medication at 10 am, followed by nebulisers and physio and also her feed at 10.30 am. Fiadh is by then looking for food! and with any luck she’ll usually go down for a nap at approx 12.30 for 1.5hrs – 2hrs.  Saoirse finishes her feed at about 12.30 and will need more nebs and physio. I just about squeeze in a quick lunch and try to get a bit of housework done before Fiadh gets up at about 2.30/3 pm.  Then its time for another neb and more physio if needed.  If not then a short playtime with Fiadh. Then its time for Saoirse to go on her feed again, followed by getting Fiadh’s tea & our dinner sorted, which is followed by getting ready for bed for both girls and more nebs and physio for Saoirse.  If Saoirse is having a good day she’ll be in bed by 8 pm but she cannot be left alone for any amount of time. Then its time to prep more medications for 10 pm and wait for nurse to come in at 11 pm.

No matter how well Naomi and Jason cope with Saoirse’s illness it would be impossible for them to do so without some serious back up.  So Naomi tell us about the support you get?  What do you need that you can’t get?

Well without the support from J&J and respite in LL & our family, Saoirse would most likely spend an awful lot more time in hospital than what she already does. We get some night nursing hours through J&J and whats not covered, family help out with. The nurses that look after Saoirse are fantastic and most of them have been on board with us since before Saoirse started needing round the clock care, through hospital stays, so they know her well. Our J&J liason nurse is great too, if ever there’s a problem she always does her best.

For further information on the fabulous work that Laura Lynn and Jack and Jill do for families all over Ireland, please go to :-

LauraLynn House  and Jack and Jill Foundation

 Now here’s a thought for you all.  Wouldn’t it be lovely if the people directly affected by the decisions made by our government actually got to have a voice?  If you could stand in front of Enda Kenny what would you say to him?

Then I would ask, if you had to give up your job to look after a sick relative, would you be financially secure? Would you be able to afford all the things your family needs with only one full income & with all the budget cuts such as the Respite Care Grant cut?

In case anyone isn’t familiar with the Respite Care Grant, the government took the decision to cut the grant from €1700 to €1325 next year.  Decisions like this can have extreme consequences for families like Saoirse’s.

Naomi, what makes you happy?

I’m happiest when my family is all at home in the one place together and Saoirse is doing as well as is possible.

Knowing Naomi like I do, I’m a little surprised that Jon Bon Jovi doesn’t get a mention in the answer!  Sorry, couldn’t resist that Naomi!

Because you are on the go all the time Naomi, it must be very hard to relax when the children are asleep.

Mmmm, I find it hard to sit and do nothing. If I am sitting watching the tv, you’ll usually find me also with the laptop or jigsaw puzzle (nerdy, I know ;-))

 Naomi, what advice would you give to any parents out there with a child who has special needs?

First of all, take any offers of help that come your way!
I know it’s not for some people but what I found helpful was meeting and getting to know people who are in a similar situation. There is one family in particular that we have become friendly with since Saoirse was diagnosed and they have been a great support to us. So if you’re like me, try to get in touch with someone a little further along the road than your own family.
Don’t sweat the small things in life…you’ll have bigger battles on your hands to contend with. And finally, enjoy your time with your child.

I think that if I were in your shoes Naomi, I would get angry at times.  But in all the time I’ve known you, I’ve never seen you angry! Do you?

(Many of Naomi’s answers reduced me to tears but this response I found extremely emotional. Her honesty is disarming.)

At the beginning, I think we were angry and bitter for a little while but never thought ‘why us’ or ‘why me’? Its more, why Saoirse? She didn’t do anything to deserve the hand she’s been dealt in life. I was certainly angry that I felt I didn’t have the daughter I thought we’d have but Saoirse hadn’t changed. She was born this way and there’s nothing we can do about it, just keep her happy and comfortable. I’m angry at what lies ahead for us as a family. No one should have to face what we will go through one day but life is cruel.

We all have frustrating days, don’t we?  The car doesn’t start, the oil runs out on the coldest day of the year, the scales are telling lies again – no way have I put on 4lbs overnight!  You know what I’m talking about. But Naomi for you, what is the most frustrating part of being a parent of a child with SN’s?

I think the most frustrating thing is how difficult it is to get equipment for her. It takes ages!! We were waiting 7 months to get an activity chair for her and now we’re in the process of getting a new bed for her…..how long will that take to get?  It’s easier to answer how long is a piece of string?!! It’s frustrating that I can’t just leave the house with Saoirse easily.  Saoirse never travels light and we always have to have another adult in the car beside Saoirse whenever we take her out. As I’m her main carer and my husband works full-time, I have to rely on family or nurses to help me take her to appointments and respite.

That add’s perspective to me on my own little moans.  Naomi, I know you will never bring this up yourself, as that’s the kind of girl you are.  But I am so impressed with the efforts you and Jason have made to raise money for the charities that help your family. It deserves mention!  Can you tell us what you have done?

In June 2011, family & friends of ours undertook the women’s mini-marathon to raise funds for the Jack & Jill Children’s Foundation. A couple of these ladies have since kept up the running and completed their first Dublin marathon in 2012 in aid of the LauraLynn Children’s Hospice. Another friend ran the marathon in 2011 and donated his sponsorship money to Our Lady of Lourdes Paediatric ward – the staff on this ward know Saoirse and us well now! Then in October 2012, we held a table quiz for Jack & Jill, in which we raised over €2,000. This year, along with some ladies who have become very good friends of mine and a never-ending support to me, I am going to do the mini marathon….walking it mind you!

I am one of the ladies that Naomi mentions above who have decided to ‘run’ the mini marathon this year to raise much-needed funds for Jack and Jill.

We have set up a group donation page and we would all be so happy if you could drop by and donate.  Please don’t feel that it has to be a big sum, any amount will be gratefully appreciated.  We all promise to wear very silly orange tutu’s and generally make a show of ourselves in aid of such a good cause.   That has to be worth a euro or two!

And here’s the link ……

Naomi, I’ve seen you rise to every single challenge that has been thrown your way over the past three years.  What would you say is the biggest achievement so far in this journey with Saoirse?

It’s more Saoirse’s achievement than ours.  She’s a tough little cookie and to be able to say that she has come through so many complications and difficulties is something I’m so proud of her for. There were a couple of times where it was touch and go because she was so ill, we don’t know where she got the strength from or how she did it but she pulled through.

Despite best intentions, I’m sure that there must be times when people around you get it wrong.   So for my final question, I’d like to know is there one thing that you would love for people not familiar with raising a Special Needs child to know?

Never be afraid to ask questions as it hurts so much to see people back away, ignore or be scared of the most friendly, hard-working, lovable little girl – don’t ignore, explore!  If people were to ask instead of ignore it, it would open up a lot of people’s minds to the person Saoirse is and her personality.  I prefer people to ask me questions cos the more people know, the more aware they will be of her, her condition and others like her.
Saoirse likes to have stories read to her, nursery rhymes, clap her hands, songs sung to her & people to chat to her. Sit with her and do these things with her and she will put a smile on your face.
Also, looking after a SN’s child is harder than it looks!And lastly, please don’t pity me.  I hate the looks of pity we sometimes get not just from people in our everyday lives but from the medical professionals too.

Thank you for taking the time to answer my questions so honestly and for letting us all have a glimpse into your world.  I am so happy that fate threw Naomi McMullan my way. There is nobody I know that has a better laugh and I dare anyone to try not to join in when she starts! She is such a good, kind friend and despite her own worries she always has time for others. My only complaint is that we don’t get to see each other very often as we are geographically challenged!  But we do manage to get together and have let our hair down every now and then – usually on the dance floor!

And here is a picture that I love of us together at a Christmas party this year.  She’s beautiful, isn’t she?

And just before I finish, I would like to share something that I read recently.   Did you know that in some cultures special needs children are revered?   They are seen as the human form closest to perfection and God, because unlike us who are here on Earth to learn, they are here to teach us.

That’s something to think about, isn’t it?

Much love, Carmel x

Edited to add:-

It’s 2nd October and to date, almost 4,000 people have read Naomi’s Story and have been moved by her honest and poignant account of her families life with Saoirse. This blog post was nominated in the Best Blog Post Category in the 2013 Irish Blog Awards. This category is voted by the public and the top 10 nominated blog posts go forward to the final, where an independent judging panel make their decision as to which post is the most deserving winner.

If you feel this deserves to be in the final, I’d love you to click on the below link and vote for Naomi’s Story, making sure you scroll to the end of the page and hit VOTE at the end.

http://www.blogawardsireland.com/category/best-blog-post-2/ VOTING CLOSED