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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The diagnosis: Ailbe

This is our third baby so no one could accuse me of being new to this. Each pregnancy and labour has been different. Our first baby, Conor was 9 days late, our second baby Saoirse was on time and Ailbe was early.

With Ailbe he was sat in the womb like Buddha as I liked to call him from around 30 weeks.  The medics call this “flex breech”.

All the professionals said “don’t worry he will turn” I had a feeling he wouldn’t. Everything was going like the previous pregnancies. Until a routine scan. Ailbe legs were measuring shorter than the previous scan. That can’t be right how can his legs shrink? Also they were concerned about the blood flow pressure through the umbilical cord and the head circumference was small. The routine scan had suddenly become abnormal and I was having to be given a test which will say if I will go into labour in the next 48 hours and having to have steroid injections to prepare his lungs for outside the womb.

At this moment I should have been worried about the baby but I am stressing about being late for Saoirse audiogram 25 miles away in another hospital. It’s strange what you worry about when everything seems to be going wrong. Fast forward a couple of hours and I am rescanned by the consultant. Within 5 mins he is dismissing his colleagues concerns and saying we just have a short legged baby as I am small. I am 5ft7 and my partner is 6ft. We go along with this and have to have weekly scans.

The day of the birth I have a planned Caesarian. My first sight of Ailbe is him being lifted over the curtain then very quickly he is whisked away to a corner of the room. It’s always difficult to see what’s going on as I am being sewn up, but kyle is looking concerned. I wait for the cry. We hear that little cry and I desperately want to hold him but I am not allowed. A doctor who I meet later, brings him over and I give him a little kiss. The doctor said that’s the first time he has reacted to anything. He is struggling to “pink up” so we are taking him down to neonatal.

Back on the post labour ward I wait with kyle for news about Ailbe. I can’t get down there because I am in a bed unable to walk. The same doctor comes in to “talk to us” Ailbe is ok just struggling with maintaining his oxygen. However, we have some concerns. This is when I start to silently panic and look at Kyle. We hold hands and the Consultant says “your baby is showing some features that may be due to a genetic disorder called Down Syndrome” (DS for short) we have sent off a blood test which will tell us and this takes approximately 48hours. Then as he stands there at the end of my bed he starts talking about stuff which i can’t take in except for one point “its normal for downs babies to struggle with breast feeding”  then says we have a great doctor who will be your baby consultant if he has DS. I had planned on breast feeding my new baby as I had with our other babies. This later becomes one of the hardest aspects I struggle with.

Suddenly I notice how everyone is being extra kind to us and how there seem to be more people in the room than necessary. When he told us this,  Ailbe was in the neonatal unit and I was on the postnatal ward in a side room. Kyle and I are in shock. The only thing I want to do is find my baby and see him. I can’t as the staff say I am not stable enough to be moved. I send Kyle to be with our baby and I feel totally lost and helpless. This isn’t how it was supposed to be. My mind is freaking out trying to recall what I know about Down Syndrome (DS). All I want to know is how will my baby be when he is not a baby. Will he be happy, will he be able to look after himself, will he be able to talk, walk, eat by himself.
When we meet with the Consultant who will later become his doctor, she sits us in a side room and she is carrying a huge book. She has a big smile on her face and says “the results have come back and Ailbe has the t21 gene which means he has Down syndrome”

At the time we found her far too happy about the diagnosis and she hands us the book which is full of pictures of children and adults with DS. I find myself having to sound positive and happy about Ailbe having DS because I dont want to appear like I dont want him. I do want Ailbe but I didnt want him to have DS and I didnt feel able to be anything but happy with the Consultant.

Ailbe spent a week in Neonatal Unit and I tried my hardest to breastfeed him. The midwives had him on a strict feeding regime which was tube fed as he wasnt feeding from the bottle or sadly the breast. I fail miserably at breastfeeding and keep going back to that comment “downs babys are notoriously difficult to breastfeed”. This turns out to be nonsense by the way. I suddenly find myself expressing milk, being unable to say out loud the term DS or think it without crying. My usual social media drops from the face off the earth. Family and close friends start getting curious, they knew I was booked in for a planned C-Sect but I havent done my usual post on FB about our new arrival. At this stage I contemplate deleting my account. I cant cope with seeing photos of all my friends with their new “normal” babies, I dont want to have a conversation with anyone about Ailbe. I dont feel ready to talk about any of it. The midwives on the ward tell me I am dealing very well with the situation. This doesnt help I just am in shock. Every photo I take I find myself taking dozens trying to get the “right one” where he looks like all the other normal babies. I then feel racked with guilt because I am thinking this.
The obs & gynae Consultant who delivered Ailbe is very sweet and calls in to see me every day for a “chat”.

During these chats I learn 4 things;

* he delivered another baby the same day as Ailbe who had DS and the family didnt know. Apparently, this has caused quite a stir in the hospital.

* He used to work with a midwife who had a baby with DS

* out of all the genetic disorders T21 is the best one to have.

* he then went on to say how he doesnt really like the NHS “seek & destroy” policy. He ponders how many couples had terminations because of the test and the baby didnt have a genetic disorder.

Acceptance of T21: Something Extra support group

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During the time from the diagnosis to the moment I met this amazing support group Kyle and I had been in free fall. Metaphorically I had hidden in the cupboard refusing to find out anything or talk about anything. Kyle on the other hand was on the information highway constantly trying to talk to me about disproving the diagnosis as well as finding out everything he could about DS.  He kept referring to key features shared by T21 and how he wanted to get another blood test done. 

I am lucky with Kyle as he is always supportive with me and when I told him about the support group we both agreed it would be good to go. I dont know what either of us were expecting from it but I think we both wanted to meet other babies/children with DS.

Before we walked in we stopped and I asked kyle “are you ready for this” not sure if I was. This was the turning point for us. 

The group gave us hope. Here we met 4 mums who were all having a hot drink sat around a table in a cafe. It was so low key that I thought perhaps I had the wrong place. Surely the group should be more clinical and abnormal. I just found a group of mums happily chatting and so welcoming and friendly. My previous experience of baby and toddler groups have always been about achievement and whose baby is better and always very clicky. However, I did not find this with these ladies. I found acceptance, understanding and support. Their children ranged from baby to toddler to teenager.  Hearing the same fears and questions voiced. I had just thought these were my dark thoughts I felt guilty about having. But apparently they were normal thoughts. This was refreshing and gave me hope. No longer did I feel alone.  The older children there are walking and talking and eating ! 

I didnt realise at the time but on that day I met a community that I now consider family. They have been there through the lows and highs in our journey.  The other good outcome from going to the support group was Kyle finally accepted Ailbe diagnosis.