The silent warriors:

The journey I am now on with my three children have brought me in contact with amazing mums, dads, and children. Every family I meet are on a similar journey but each one is different. It can be different for lots of varied reasons. Not all of them have a diagnosis of Down Syndrome. There are many parents out there raising their children who have genetic disorders and are a lot sicker than Ailbe. One friend I know has a child who has a genetic disorder so rare that she is the only person in the world with this.

The one key factor that we all share is that we have a child who has special/additional needs. I have said many times before that this journey has brought me a new family that I never knew existed. A community that is there at your darkest moments, who understand what you are experiencing. They don’t always have the answer you need or the solution, but they provide you with something that is priceless..support.

I admire each and every one of these parents I have met. They have a daily battle that most are lucky enough not to experience. Their strength, humour, and ability to still have time for others is amazing.

Luckily, Ailbe does quite well with his physical health.

During those first 10 months when Ailbe had frequent admissions. I spent a lot of time on both the Childrens ward and their assessment unit. It was on one of those trips to the assessment unit I met a family with a little boy. Its not the most pleasant place to be as you are there with a sick child with all the fears and worries that are attached to that. Ailbe was approximately 5 months old at the time and they were sat next to me. Usually I keep to myself and just smile at other families maintaining a safe distance from them. Not wanting to have all the questions that came with it like “why are you here” “did you know he had DS” or even worse silence after you say your child has DS.

When I looked at the parents sat next to me I felt drawn to them. I wasn’t 100% sure but I was confident enough to initiate conversation and ask them if their son had T21. I used the T21 term as I knew that only medical professionals and other families like me would likely know what it was. Almost like a code word without telling the whole world. We got talking during that brief meeting. Her name was Jenny and her son was called Eli, he was 4 weeks younger than Ailbe and had gone through a tougher time physically. I offered my contact details and spoke to Jenny about our local support group and how they should come along.

Over the next couple of months we would try and meet up but usually one of the boys was sick or they had hospital appointments. We kept in contact and would be a source of support for each other. We were both excited, as they would soon be starting at the physio group together. We had planned to go for coffee afterwards with “our boys”.

Coming home one day I got a message from a mutual friend in our community asking if I had seen a post on FB? Out of nowhere was a post from Jenny informing everyone that her beautiful Eli had gained his angel wings at 6 months old. I was in total shock, I had only been chatting to her the week before making plans to meet up with “our boys” the following week.

This hit me quite hard. I am not gifted enough to explain the range of emotions that I have gone through. Its not my story to share about Eli. I have had Jennys permission to talk about the loss of Eli and how it impacted on myself. Still I worry; who am I to even try and broach this subject. What do I know about loosing a child. Thankfully, I have minimal experience of this with the exception of a miscarriage which was in its early days. Sadly, since having Ailbe I have heard so many stories of our beautiful little ones gaining their wings. In our online community we have a “wave of light” where everyone can share an image of light/candles/flames to honour the passing of a beautiful soul. I would like to say that it doesn’t happen often but I can’t.

The strength, courage, humility, love and resilience that my friend, Jenny, has shown is astounding. When I talk about the family I always talk about Jenny, yet there was a dad too and his name is Dave. So forgive me if I just mention the mum. When they first lost Eli I reached out. Not because I wanted to know details but I wanted them to know that I was still here for them even if they didn’t want to know us anymore. I would completely respect their decision.

It has been just over a year since Jenny & Dave lost Eli, and Ailbe lost his friend. It’s no consolation to them but I think about them all the time. I think about the friendship that should have been for “our boys”. Every time I meet up with the girls from the support group I think of Jenny & Eli. A sadness I feel that they are not there too, sharing and celebrating milestones. We are still in contact but I am respectful and have given Jenny the time and space they have needed.

I recently met with Jenny. I experienced a range of emotions, mostly I was nervous. I wanted to cry. Not because I felt sorry for Jenny, but for the strength that she wore, like a warrior with her shield. I don’t know if I could be that strong.

Sadly, this is not an isolated story. As every parent who has lost a child knows. I have three friends whose children have gained their angel wings. This doesn’t include miscarriage because if it did I expect it would be most women I meet. When my best friend lost her daughter Hannah, she was 3 weeks old, premature, and beautiful. This was many many years ago and thanks to Nic I knew that the worst thing I could do was be awkward talking about the child they had held for a short while. Or even worse not talking about Eli at all.

Nic & I still talk about Hannah. Hannah is a part of my best friend, her journey and we remember Hannah when we chat. We celebrate her short but beautiful life and everything that surrounded that time. We talk about how old Hannah would be today, or what she might be doing.

Death and grief is not an area I feel comfortable with but that doesn’t mean I should avoid talking about it. So many parents are out there every day without their child. Going through a grieving process we know nothing about. I am thankful I don’t have that experience. I don’t want it. Nobody does.

After Ailbe lost his friend I immediately went to the GP to get Ailbe checked out even though he was fine. Not one Doctor judged me about this anxiety. They all were so kind and had complete understanding. Some of those doctors knew Eli and his family. They too were sad and without breaking any confidentiality they spoke about the impact his tragic loss had on them. Sometimes we forget that even though its their job it still affects and stays with them when a child dies.

I have tried to write about this topic for quite a long time and feel that I can’t do it justice. So forgive me if I have been a bit clumsy at times. It is important to me that I talk about Eli, Hannah, and all the other babies and children who gained their angel wings to soon.

To all my friends and all the parents whom I have not met, you are amazing.

Jenny, thank you for keeping me a part of your life and your journey 💖

Nic…mi mejor amiga 😘

#childloss #grievingparents #wcat #sands #dontscreenusout #downsydromeawareness #dsa #wouldntchangeathing #prembaby

Fretting over the small stuff

Life was not meant to be this hard. When I used to wonder how life would be as a mum I didn’t expect it to be like this. I see other parents complaining about small issues in the grander scheme of things. How they are dealing with a phase right now and it’s exhausting. However, it’s a phase and it will pass.

When I had Conor it took me about 8 months before I realised that it would be ok as what he was going through was a phase and it would get better. I don’t seem to have that with Saoirse and Ailbe. I really hate the fact that I have to think really hard about how to parent my child to be able to survive the day. It sometimes feels really unfair that my children don’t respond to normal parental boundaries or that my youngest isn’t keeping up with his peers due to global delayed development. I see people look at us in the supermarket, town, car park, or basically anywhere in the public eye when I am out with the kids. It’s not all bad and 90% of the time it’s amazing. But that 10% is bloody hard work.

It was suggested recently by Saoirse new teachers that I should reach out to the parents so Saoirse could get to know her classmates out of school. I stopped short of snorting with laughter.  I realised that it’s not the parents that keep away from me in the playground. I keep away from them. I just don’t want to hear about their life and what they perceive as difficult right now. I know I am distant to others so I don’t have to make small talk about things I have nothing in common with. My child isn’t like theirs. I see their side ways glance when Saoirse isn’t follow the rules and yes it breaks my heart when I see her sitting on the edge of the floor mat when all the other kids are together. When I chat with other parents I enjoy it I just don’t really show me. People don’t actually want to hear about your day. It’s not a criticism it’s just how life has become. I tend to reflect quite a lot and on one occasion i wondered:

How do you deal with the mummy and her amazingly advanced baby?

This happened a year ago when Ailbe was 6 months old, he had no head control and no upper body strength so if I sat him on the floor he would just fall in to a laying position. I just walked out and cried in the car. Leaving amazing baby to bum shuffle and hold her head up high with her drooling mouth from teeth coming through.

Our babies were the same age.

I felt physically sick, please don’t give me your sympathy or empathy just be normal and don’t try to understand what it is l am going through.  I am sure this new mummy would be mortified with how she had left me feeling.

Some days I can feel myself slipping in my mental well-being. This is something new I have had to get used to since Ailbe came along. Actually that’s not entirely true. Since Saoirse came along I have experienced good and bad days. Everyone has different names for it. It’s not something I find easy to talk about as I have always been a strong woman and still am. I get a lot of support from family and friends who say “don’t be so hard on yourself, look at what you’re dealing with”

This isn’t really a consolation to me as I see myself as a failure as a mum. I constantly berate myself because I feel I am not doing enough to help my children achieve in the areas they need, or that they are sat at home instead of being outside exploring nature, learning ballet, playing cricket, or joining a competitive team sport. Or the times that I don’t respond in the best way because I am tired, stressed, worn out, or generally having a bad day.

On these days I find it so hard to see anything positive. I can’t quite shake it off. I also can’t pin point the exact cause so I can deal with it and make it better. I hate those moments. I feel miserable and agitated. I don’t want to feel like this and don’t understand why I feel like this. I become snappy at Kyle. The majority of the time I am ok and deal with everything life throws at me. However, some days or not even days but moments I can’t handle it.

Last week we met the new community Consultant for Ailbe. I was a little nervous as we sat in the waiting room. It turned out to be a positive experience, she was amazing, thorough, and most importantly not dismissive around our concerns. Despite being 19 months old he has delayed development. Where I don’t usually torture myself by comparing his milestones to others. This time I did.

Why isn’t he speaking,  walking, or eating food that hasn’t been chopped up or cut into tiny pieces.

I looked at my gorgeous boy and wanted to cry, feeling that life is unfair. As we tried to have a discussion about Ailbe it was evident we couldn’t stop him from making the noises he does. Fearing, what if he never progresses from this stage.

I have recently been looking at him, his gestures and thinking how cute they are. But what about when he is older. Will people still look at him doing these movements and noises and think ahh look at how cute he is. Or will they judge him.

All my fears were validated today when I was out, sat talking to some ladies I have known for 3 years. Alibe was doing his usual chattering being his normal noisy self. I didn’t take much notice of it until one of the ladies got up and started saying bye to everyone except me. I said bye to her and she blanked me. One of the other ladies asked why she was leaving. She turned around and said “I am just really tired and that is irritating me” she made a point to stare at Ailbe then walked off.

It didn’t sink in at first and I initially laughed it off. Then I couldn’t laugh it off. I was furious and really upset. I found myself trying to work out why she said that. Was she upset with the noise he was making, was it due to his Down Syndrome, or was it both? The other ladies were very upset for me and tried to make me feel better but I had to leave.

Sadly, I know I will have many more negative experiences but this was my first direct one. I got in my car and the positive was I didn’t cry!

Despite the challenges of having children with complex needs and my roller coaster of emotions as I try to process everything.  I feel lucky.  I have three beautiful children who brighten up my day. Just before the meet up with the ladies I had been at the hospital with Ailbe to have his hearing aids fitted. Whilst waiting, Ailbe engaged the people sat around him and they all started talking together, laughing, and reminiscing about childhood cartoons. Ailbe has this ability to bring out the best in people. So when I have a negative experience I know deep down in my heart that its not about my son. Their reaction is about their issues they have in their life.

When my kids call for mummy, or give me a smile. Or we have snuggles on the sofa and watch a film, when they all play nicely together, and when one of them does well.

I wouldn’t have any of this without them. So as much as I struggle at times, I wouldn’t change a thing.

These are the little things that make me realise I am lucky.

 

 

Germ Season

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The germ season is something you may or may not know about.  There are lots of reasons why you may know and dread it.  Mine is because we have children with low immune systems. If you don’t know about germ season and don’t dread it I envy you. I have found recently that it is quite an emotive subject with people. It seems everyone has an opinion on the topic and to my surprise it varies greatly.  My working background has always been a Nurse. So therefore, it makes total sense to me to stay home when you or your child are sick with potentially infectious viruses. I have always known this but until Ailbe came along I never truly understood the consequences of it.

I understand it now and give it the true respect it deserves which is born from fear. Fear that your baby might end up in hospital which then turns into a hospital stay. You then as a parent are sat on a hospital ward watching over your baby/child feeling helpless. Unable to do anything except let the health professionals do their job at keeping your child alive. That stark clinical scary environment soon becomes normal and the staff familiar. They greet you with smiles and reassurance as you sit there worrying about everything. Racking your brain to remember all the details that you will be questioned on.

Our first hospital admission was very traumatic, Ailbe was approximately 9 weeks old and he had been feeling “not quite right” at home with a cold. As this was all new to us. I guess we let the symptoms get worse before accessing help so therefore Ailbe was worse.

On this night we put him to bed and he was his usual self with a little cough. In the early hours of the morning,  Kyle and I woke up to Ailbe coughing non stop. At first we picked him up giving him a cuddle and tried a feed. He didn’t settle and continued to cough. The cough continued so we called 111 and it was during this call that our situation was worse than we realised.

The operator called an ambulance. Whilst waiting for the ambulance I had managed to settle Ailbe. As the paramedic walked in I started to apologise saying “typical he is falling asleep just as you get here” but the paramedic realised that Ailbe wasn’t just settling and after taking some oxygen levels and monitoring she tried in her best manner and voice not to alarm us. We needed to get Ailbe to hospital straight away.

Suddenly everything became serious. Ailbe had an oxygen mask on and she was ushering us into the ambulance. I lay on the bed with Ailbe in my arms with this paramedic fussing like an anxious bee around us. I think it was 4am and we were flying through the streets with blue lights. She kept checking on Ailbe who kept trying to go to sleep. In what is only a 15 minute drive to hospital she called the hospital to notify them that they needed to have a paediatric team waiting. The one thing she said that never leaves me is “If he drifts off to sleep again I will have to help him breathe”

This was all unfolding as we sped through the quiet streets as I was desperately trying to stay on the bed and keep Ailbe from falling. As we approached the hospital she said “when we get there I am just going to take Ailbe from you to the doctors waiting as he is really poorly and they need to look at him straight away” and with that we pulled up and she ran off with my baby to a full medical team waiting at the doors. No wait in an ambulance line or sit in a cubicle waiting your turn to be seen.

Despite all my Nursing background I just stood there holding his red book. Watching as they swarmed around my little baby hearing a doctor ask me if he is usually this mottled. I couldn’t speak, I couldn’t think, all I could do was stand there feeling helpless and scared. Suddenly looking at Ailbe whose tiny chest was going up and down really fast, he was very pale and blotchy all over. The nurse asked the doctor how long to give the antibiotic over a period of time? the doctor said “I need to push this through right now, we can’t afford to wait”

Then after what seems like a lifetime they got him stable. We were moved onto the children ward and that was my first visit with Ailbe. It wouldn’t be his last in fact he would have another 6 admission before he was 10 months old. Not every admission was this dramatic but they all were the same; terrifying.

We are now in our second “germ season”. Ailbe is on a regular antibiotic to help boost his immune system, he takes this October to March. This seems to work quite well. However, that fear never leaves you. I hate how it actually influences our lives. Worrying about Ailbe getting sick from being in the supermarket, or out shopping, even simply from his older siblings being at school around sick bugs. I know it’s not normal to have a oximeter and hand-held nebuliser at home for when your child is poorly but for us its a life line.

Thankfully, Ailbe is physically stronger now than in those early days. We, as parents are more aware of early warning signs and when to access help. One of the biggest impacts that gets forgotten about is how these hospital admissions affect our other children. The countless times that they have woken up to find mummy & baby brother not there, or come home from school to find we are in hospital. Our last admission with Ailbe was on Christmas Day and it lasted 2 weeks, during this 2 week period Conor and Saoirse spent every day/night with either mummy or daddy at hospital with Ailbe. So when School started back and all the kids were talking about their christmas holiday excitedly, Conor & Saoirse weren’t able to share in this. Not because we made their holiday miserable. We tried everything to make it as normal and happy as possible. Not once, did either of them complain about it.

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Our Story

 

 

A little while ago I was asked if I would like to contribute to a new charity that are compiling stories from parents who are on the Down Syndrome journey. Of course I said yes! I would love to help be part of something positive and help change perceptions or even provide a form of support and answers for prospective/new families about what its really like to raise a child with DS.

So, why is it that 6 months later I am still trying to write our story and yet have managed to write other things. I ponder this a lot. Why cant I put into words how Ailbe has made a difference to our family. Why is it so difficult. Other parents have managed it. Why cant I??

Perhaps, 18 months is a huge amount of time to summarise? Or maybe its not always been a positive journey. Perhaps its a combination. Therefore, I am going to try today so please bear with me.

A brief introduction for those who don’t know us. I am Siobhan, I am married to Kyle and together we have three children. Conor (8yrs), Saoirse (4yrs), & Ailbe (19 months) who was born with a post diagnosis of Down Syndrome.

Ailbe wasn’t the baby we had expected. He had more health complications than my other 2 children put together. I found myself crying more often and found friends and family cried more often in those early days. I couldn’t share “the good news” with the world about our baby as I didn’t feel it was good news at the time.

I had a poorly baby with an unknown future. There was this moment on the NICU unit where the bounty lady was with us wanting to take photos. I hadn’t said my baby is different I wanted to feel normal like all the other parents. Although if their baby was there I guess we all had worries and fears about our children’s future.

So there we were in the NICU unit as a family wanting a siblings photo. The lady had this big trolley with lots of little accessories to put in the photo and one of those items was a little sign that had a different message on either side. The lady chose the message  “special delivery” on one side. As she was posing Ailbe with this little sign the Consultant walked in to discuss one of the many ongoing health issues we had. During this conversation he mentioned as per usual about the DS. I noticed in my peripheral vision the lady hesitated and turned the sign over with a more neutral message. I just watched her and said nothing. I didn’t want to make her feel better by saying something, if I am honest I wasn’t strong enough to verbalise the words without crying. This was going to be the first of many awkward moments that I would and still share with complete strangers. The difference now is I am stronger and have more knowledge about Ailbes future. They haven’t all been negative. To give a nice balance to this. On our first outing to the big outside world I had Ailbe all tucked up in the buggy enjoying the feeling of no one can tell he is different.  As we waited for the lift there was a woman with her son. As the lift doors closed this lady looked at Ailbe smiled and said “I see you have a special baby too, this is my special baby” and when I looked at her son I saw he was a teenager with DS. We had a brief chat and I left that lift a different person with a different attitude. It had also, given me a new term to use for Ailbe. He was my special baby. I do feel that every encounter we have had and thankfully most have been brilliant are there to make us stronger as a family unit.

So going back to our story. How has Ailbe made our world better? It feels cliché to say he is amazing and has opened our eyes to a new world. Its true but that doesn’t give it justice.

When Ailbe, came along we thought we knew how much we could handle in our lives. After all we have two children already and one of those is Saoirse!

What did Ailbe teach me? that I can cope with whatever you throw at me. He has brought a whole new family into our lives, a community that we would never have met without him. A community that is not based on socioeconomic status or what we drive, where we live, what we do for a living, and it is united by 1extra chromosome the rest is irrelevant.

We are here, living and surviving and we are LUCKY enough to have an amazing little human being who is teaching us a whole new world and what it has to offer. He has taught me that I don’t give up when life gets hard, he has taught me that I no longer care what you think of me.

I want the world to change for Ailbe I don’t want Ailbe to have to change for the world.

I used to be scared of the term disability because I didn’t understand it. I only knew about the negative aspects of a disability. Sadly, people will only know what they are told. That is not a criticism of other people. However, its time that we bust those myths and fears that surround the unknown.

I am so proud of Ailbe, his brother and sister love him and he loves them. We went through the stage like everyone else has about how to tell your other children about the diagnosis. Its very difficult to explain something that you haven’t got your head around yet. Kyle wanted to tell Conor almost straight away, He was worried that other children at school might find out and understandably he didn’t want Conor finding out that way. In trying to gauge his understanding of a disability I asked him some questions.

Mummy; Conor, why does that girl in your class use a wheelchair?

Conor; because she has a verruca mummy

That was all the answer I needed at the time. So one year later we were back at the dilemma of when and how to tell Conor about Ailbe. I had looked at books which we decided not to use. During the “talk” we were quite taken back at how Conor dealt with it. Conor looked at Ailbe and copied what he was doing and said “look, we aren’t different we are the same”

In that moment I felt my heart burst with pride. They say our children teach us. If my 7 year old could move past a diagnosis and see the brother behind then the world can too. As time moves on and we reach more milestones it gets easier and now I don’t even think about the Down Syndrome I just see my son Ailbe. Who by the way is amazing!

So our story isn’t just about Ailbe its about everything that goes with it. We have this wonderful support network of other parents that get it. They have all been there and know how you feel and sometimes know how you are feeling before you do. I wouldn’t change a thing!

 

Is it a label or validation – why can’t it be both?

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A couple of months ago I was faced with this comment during a discussion with a professional about Saoirse:

so what you’re telling me is that you would rather label Saoirse than look at your inconsistent parenting”

Instantly I felt guilty for wanting a label, that it was somehow wrong. Did they all think that? Was I just another “parent” demanding the world fix our daughter and was she right? Was it really our fault? If I am honest she made me feel embarrassed and that I was a failure as a parent. I no longer felt I could hold my head high in front of professionals as surely they must all think the same as her?

What is so wrong with wanting to know why your child is reacting or behaving the way they do? Also, what does inconsistent parenting really mean? I don’t know many parents out there that get it right all the time, it doesn’t mean they are not doing a good job. If our parenting was inconsistent then our eldest would be displaying the same issues?? He doesn’t.

Of course I held my head high and walked away. Once in the car my head wasn’t held high as I was devastated.

I am pleased to say that so far we have not had many negative experiences. There are services that are amazing and do a fantastic job. Without these guys coming into our lives when they did I don’t know what state my mind & family would be in right now.

So why do health professionals get caught up on giving labels and why are families and patients chastised for wanting one.

For me as a mum, I need the validation of what is going on with our daughter. It’s not so much the label I am interested in but the rationalisation behind it, and having the knowledge and tools to work on the day to day struggles. However, without a label there is a reduced amount of support available.

We just want our daughter to have the best outcome possible. All research suggests early intervention is best. What can we do to reach our daughter with minimal damage to her emotional development?

We do have one label “Sensory Processing Disorder” when this was given it was delivered with a follow up statement “but sadly there is no service as funding was cut 3 years ago’ basically, they identify a problem without giving the tools to deal with it.

As time moves on and it becomes more and more obvious that something is different with our daughter, I go back to that conversation accusing me of wanting a label and I get mad. I get mad at myself for allowing her to speak to me like that, I get mad because I can’t seem to fix it, I get mad because it causes arguments in the house about what’s happening, I get mad when I see our eldest worrying in case she gets angry with him. I get mad that our daughter isnt getting better, then I get mad at the world with all the (un) helpful advice or anecdotes from well intentioned people. Getting “looks” from others when we are out as Saoirse is having a meltdown.

Sometimes when I talk about a difficult day I don’t want to have any advice or it tried to be fixed. I just want that person to listen and say “god that sounds shit”

In trying to do the best for all our children I have tried everything, done everything, spent hours on the internet trying to research symptoms, behaviour, patterns, resources, solutions, spoken to anyone I know who has any knowledge or expertise in the field of child health. At the end of the day it doesn’t matter how much research you do or how much you try your best, you feel alone and stressed from it all. You start to withdraw from social outings, friends and the outside world. Eating out is no longer an option. By 8am we are usually exhausted and the day hasn’t really started. Watching your child struggle and deteriorate is heartbreaking. As a parent you are their advocate. You are the one fighting their corner. I know I will fight with every ounce of strength I have for my children. I am no different from any other parent out there.

So, what is the answer? For me I am slowly starting to accept that I cant fix Saoirse problems myself. I need help, and as a family we need support. What we don’t need is judgment from others. Just knowing someone is out there ready to listen can be vital.

As I sat in a review with Saoirse Consultant, I was told that we just needed to “risk manage” Saoirse and there was nothing further that could be done until Saoirse turns 5 and starts school. That was a couple of months before the school summer holidays this year. I will be honest, this summer holiday has been rough on us as a family. We have had fun times, good times, difficult times, and a few terrifying times. Would I change Saoirse? No I wouldn’t. Would I change how the service supports families…yes, in a heartbeat.

Ailbe: a week in NICU

 

During those first few days of Ailbe being born, I was stuck in a hospital away from my husband and other children. I was recovering from major surgery and dealing with the biggest emotional trauma I would ever face. Ailbe was in NICU (Neonatal Intensive Care Unit) being tube fed, needing oxygen and I was like a YoYo between the ward and NICU. The two wards were on different floors with quite a long walk down corridors. Initially, I had to rely on Kyle, or busy ward staff to take me there and back in a wheelchair. I would spend as much time as I was allowed with Ailbe, desperately trying to get him to breast feed. Constantly feeling like a failure when the midwives would come and hover over us with a bottle saying he needed to have his milk (they had a strict timetable) If NICU staff organised the transport system there wouldn’t be any delays!

The staff were amazing and incredibly supportive during this time. Everyone kept expecting me to breakdown. How could I breakdown. I had 2 children at home and a poorly baby that needed me. What good am I as a mother if I can’t hold it together. Behind the closed doors when no one was looking I did have my mini break downs.

I knew there was another baby like Ailbe who was on the same NICU unit, not only did they share a diagnosis but their birthday too. Now thats extra special. I figured it out pretty quickly which baby was the “other one” the staff talked so excitedly about. I remember seeing the family standing/sitting around the cot in NICU. I didnt realise it then how we would become friends and be able to sit around and laugh and be happy. Celebrating the highs and supporting the lows of life with our new “special” babies.

So as I would walk back to the post-natal ward I would see all the mothers with their babies all excited. I even saw another parent from my son’s school who had given birth to a boy. I just hid in my side room. Unwilling to engage in conversations and have those awkward questions. Everywhere I looked on the ward were pictures of typical babies.

One time a cot with a precious new-born baby was wheeled down the corridor with an exhausted looking mother the dad walking alongside, his role to carry the bags. Attached to the cot was the largest foil balloon celebrating the arrival of the new baby boy. The midwife caught my line of sight and looked at me with this sad and apologetic look. In those early days I found it really hard to see other babies. It took me a long time before I could look at other babies and not cry and feel envious that they got the “baby” they expected.

One morning sat in my room waiting, I had a visit from a midwife. She caught me crying and sat down, her advice helped me move forward a little bit. This lady told me it was OK to be feeling what I was feeling. I was grieving for the child I didn’t have and the uncertainty of our future. She spoke about a poem called “Welcome to Holland”. I had never heard of this and of course I wasn’t in the right frame of mind to absorb it then. Most of the time I would just sit and look at Ailbe feeling sad that he was different not knowing what the future held for him. I was in mourning. Lots of people would say to me that he will bring us so much joy but I couldnt see that then. All I could see was my child would be disabled. We didnt need a book with faces of children with DS which is what we were shown. We needed information of what life will be like raising a child with DS. We needed to hear the happy stories, the love, the fun, the community spirit, and that its normal to have negative thoughts. All of this I now know exsists within the Down Syndrome Community.

During that week Ailbe and I stayed in hospital, I was shown so much love, compassion, and kindness from staff it was overwhelming. I cant be sure but I believe that most of the team that delivered Ailbe popped onto the ward for a chat to see how we were both doing. I even had a visit from the maternity midwife who looked after me on the maternity assement unit before Ailbe was born. I didnt know this before Albie stayed on NICU but the Consultants are down there all the time, day and night. One time I walked onto the unit I saw this guy doing a scan of Ailbe. I had never met him before, he was a Consultant who was scanning his heart. They had found a little hole in his heart. The staff were all so humble in their approach and dealings with us it was lovely.

During that week I was visited by friends and family.  Despite hiding away from the world I had some friends who would come and visit us. I found these visits important. Being able to see other people love my baby as much as we did and be normal around us was essential. During one vist I was a little shocked as I had an unexpected guest.  My dearest friend had travelled over 2 hours for a 1 hour visit then having a 2+ hour drive home. This was very touching. As with all good friends we didn’t need words just a hug and shared tears.

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The day finally came where we got to take Ailbe home. That was a good day, terrifying but good. We were lucky we got to bring our boy home.

Life with Saoirse; The ups, downs, laughter, and tears of living in a complex family

Saoirse:

1415014_10151761420442111_1117916334_oA few months ago I thought about writing a blog about our youngest son Ailbe who was born with “an extra gene” and how our life has changed. 

Yet when I sit to write anything it all comes back to Saoirse. So rather than try and blog about Ailbe I have decided to write about what we experience everyday. Life with Saoirse.

Saoirse is amazing, funny, fast, clever, beautiful, headstrong, and cunning. Unlike Ailbe, Saoirse looks like a typical girl within her peers. What you don’t see is the struggle Saoirse has with life and family life. 

When Ailbe came along, everyone knew what was different about him as they did a blood test and it came back as trisomy 21. With that test result came all this support with a plan of care in place. I won’t lie and say it was easy. It was far from easy. The last 18 months have been very hard. What did happen when Ailbe came along was make us realise that we were a family in crisis trying our best to manage. All this support and help was being put in place for Ailbe yet what we really needed was help with Saoirse.

We didn’t have a blood test to tell us what was different about Saoirse. The journey with Saoirse has been long, hard and difficult. To date we are still nowhere close to a diagnosis.

It has felt like a fight from the very start. 

As health professionals don’t know why Saoirse is like she is they have waited for things to either get better or get worse. I am not talking about a couple of months duration. This has been officially going on for the past year with a Paediatrician, unofficially its been going on since she could walk. To start with they assume its our fault. It must be the parents lack of boundaries and consistency. They don’t look at the fact that Saoirse has an older sibling who is twice her age and he doesn’t present with challenging behaviour. However, it must be the parents fault as the nursery don’t find her a problem. Yes they say she has all the attributes you want in an adult…just not in a 3 year old. So the paediatrician listens to the nursery staff as they obviously know our daughter better than us. 

I have no idea where to start with our story. Should it be the beginning, when it started or where we are at now?

Saoirse was born on time and arrived 4 minutes after my waters broke. The medical term is a shock delivery. The birth was very traumatic as when she was born she stopped breathing and had to be resuscitated for a significant amount of time. Saoirse spent her first 12 hours in the Neonatal unit. However, Saoirse grew stronger and stronger and we have always been lucky health wise. Fast forward approximately 10 months. At one of the Health Visitor checks I point to Saoirse who is sat leaning against the door frame and banging her head. I say “is that normal?” I am told yes it is fine and all babies do that. Then another 6-8 months pass. Saoirse is continuing to bang her head on anything she comes into contact with and isn’t speaking. I once again raise my concerns. The Paediatrician tells me its nothing to be concerned about but he organises a Audiology appointment to make sure. At this appointment is when I first start to realise that all is not OK with Saoirse. I can hear the sounds through her headphones but see that she can’t hear them.

As I sit there silently crying and feeling scared about the future I realise a important point. Doctors are not always right. As a parent you must follow your gut instinct.

Due to the hearing loss we let a lot of behaviour go. We would always blame her hearing loss for anything that seemed unusual. In a way I still do.

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