Another admission

Today I took Ailbe for his follow up respiratory appointment. Granted he has been quite poorly all week with a cold. However, what I didn’t expect was an admission straight from the out patients appointment.

We had such a bad 2017 with repeat hospital admissions, with his last one being Christmas Day for 2 weeks. So as we had managed to cruise 2018 without hospital admissions, this hit me quite hard. I don’t want to even get started on why the palms of his hands and feet have turned orange!

To make things worse we are at a hospital that isn’t our usual one. Making travel longer for Kyle and the kids to come in or for Kyle and I to swap shifts if he stays in for longer than a night.

Ailbe currently can’t keep his oxygen levels above 84 when asleep without the support of oxygen. He has had hourly nebulisers, blood tests, medicine shoved down his throat and sadly all over his face, & he has to have an nasal prong mask force oxygen up his nose. Ailbe has gone on strike! He is like a restless tiger lurching around his cot unable to settle because he has cords all over the place. Looking at me in sadness and disbelief that I am allowing it to happen to him. It’s a totally pants week.

The only great thing that happened this week was Conor sang a solo in his nativity. Best of all he sang like an angel ❤️

So Conor and Saoirse have to contemplate another Christmas without their brother at home, whilst Ailbe fights off another respiratory infection.

Chilling out Ailbe style

Ailbe has been feeling poorly over the last few days. We have been quite lucky that we have managed to stay out of hospital so far.

Today Ailbe is feeling particularly rubbish with a cold. As I have said in an earlier blog post “Germ Season” a cold for Ailbe becomes very dangerous and despite every prevention we put in place there is always a chance he could end up in hospital with respiratory problems.

Once older brother and sister are at school, Ailbe gets a chance to have a pj day with cuddles and of course his favourite girls #singinghands #lovedoesntcountchromosones #fireman #chillout #relaxingathome #love #dontcountusout #wcat #dsa #makaton

25 mums 25 days 1 special gift

The wonderful charity #wcat #wouldntchangeathing have been in collaboration with #itv #thismorning #buble to produce another beautiful video #25mums #25days #1specialgift you can find it on their ITV app or here is a link

https://www.facebook.com/1858993587485982/posts/2217367588315245/

I sat watching it with Ailbe and I felt proud. I had been into the school beforehand and was feeling pretty rubbish. Then I saw all these amazing parents from my Down Syndrome community/family on the telly fighting to make the world a better place for our children’s future. I realised that with enough awareness raised we can actually make a difference. How cool is that!!!

@wcat @lifewithsaoirse @christmas @letsdothis @changetheworld @iamable @thismorning @itv @buble @dsa

Charities, parties, & nativities

The past few weeks has been quite busy in our household. As a family we were lucky enough to be included in the new awareness project for the Charity #wouldntchangeathing (WCAT). My son is very excited as he has made it on to YouTube, in fact we all are. I am hoping you have already seen it. If not here is the link https://youtu.be/YcbMv2f946g

It is only a short video of us signing “christmas tree” but it has meant so much more than I had anticipated. For a start my older two children Conor & Saoirse got to watch the clip at school in front of their peers and teachers. I cannot begin to describe the overwhelming pride and love I had for my children when I watched their little faces go all red and embarrassed then to be brave and stand in front of the class and repeat the sign “christmas tree”. You see my children are never picked for the major roles in nativity plays or get chosen for important jobs at school. So to see them being catapulted to the limelight was awesome!  As a result of this video I have arranged to go in to teach the whole school a Christmas Carol using makaton!! I am a little nervous as I have never had any training in this.

Today was the nativity play for Saoirse. Like I just said, my kids never get the major roles but Saoirse was a very good sheep. This was her first school nativity play so obviously, I was there with all the other parents excited and proud. There were two shows, the first was a dress rehearsal and the second was the official one with all the parents. During the first show Saoirse coped quite well. She didn’t say her one line but she seemed to be enjoying herself singing and dancing with everyone else. I felt good about this. I let out a silent sigh of relief. I never know with Saoirse how things will turn out. So when I returned 5 hours later to watch the official show I was feeling upbeat. Whilst waiting for it to start I had the “awkward” conversation about Ailbe with another mum.

Mum: how old is Ailbe?

Me: he is 20 months

Mum: oh, he is quite small for his age then

Me: ?!? yes I guess so?

I hate those conversations, its why I actively avoid these situations if I can. Perhaps the comment was purely innocent as Kyle suggested when I told him about it. However, there is this niggling thought that sits uncomfortably in the back of my mind. I try to let it go and move forward. I will be able to move forward but not today. Perhaps next week? In a world where parents are so competitive about their children, was the mums comment rude and suggesting that my son is not as good as the rest of the almost 2 year olds like the one sat on her lap?

Saoirse appeared looking proud in her sheep outfit with the rest of her class and gave me a big smile and hug, the thoughtless comment from the mum disappeared. Then it all went wrong from there. I could tell from her expression that she wasn’t in a good place. All the other children were sitting where they were supposed to. Saoirse on the other hand was just milling around, edging away from her fellow sheep. Like the stray that didn’t belong. I could see the look on the other childrens’ faces. The look of horror that Saoirse was not doing as she was told. Every other child was focussed on the play and their roles even if they didn’t get their lines correct or had to be prompted they were paying attention, with the occasional stare at Saoirse. Saoirse was sat for most of it away from the others curled up like a ball. Occasionally she would rejoin her flock but would soon wander off. One of the teachers tried to “whisper shout” her name. This gave me a little giggle as she cant hear much with all the music, especially as her hearing has got worse with the cold weather. When the teacher finally got up to get her, Saoirse almost knocked her over by crawling through her legs. I sat there like a deer in the headlights. I couldn’t look away, I could feel the sadness building inside. With a realisation that Saoirse was not coping with the situation I just wanted to scoop her up and leave. At one point she fell off the stage, the look of hurt pride on her face was heartbreaking. Despite all of this, she left happy.

I had had a similar experience at the weekend. It was Saoirse birthday and I had paid for a Princess to come along and entertain all the children. Of course the emphasis was about Saoirse. When the party was in full swing, I would find Saoirse in the kitchen looking for food, or running off to the other room where her big brother and another boy were. This had happened the previous year too. Saoirse doesn’t seem to cope well with big social gatherings. I don’t think she likes to be the centre of attention or perhaps she just wants to be left alone?  Even though none of the other parents said anything to me about Saoirse not joining in I felt it. I felt pretty miserable that I had created an event which just highlighted my daughters differences to a new set of parents. Again, Saoirse really enjoyed her party. Perhaps not the way society expected her too. But in her own way she enjoyed it. Saoirse joined in when she wanted to and isolated herself when it suited her.

When we got home from the nativity I was feeling a little brighter as Saoirse was happy and the nativity play was becomming less prominent in my mind.

I popped to the shop and when I pulled into the carpark I could see a woman laying on the ground surrounded by a few people. By the time I was parked and walking to the store I could see her walking towards me. It was then I noticed she had Down Syndrome, she was hobbling along the path with another woman by her side. I asked her if she was ok? That I had seen her on the ground. She told me she was ok she was just a bit wobbly. As they kept on walking I asked the woman with her if she was going to be alright and if she had anyone with her. The lady said she was OK and that she was with her. They went their way and I went towards the shop. Out of nowhere I got hit with a surge of sadness and anxiety,  all these questions swirling in my mind.

Was she ok? Who was that woman with her? Was it a carer? Did this carer really worry about her, where was her family? would she love her and worry about her like she deserved?

By the time I got my trolley I was actually upset. I wasn’t really upset about this lady I was upset about Ailbe. Who would be there for him if he fell over in a car park? Would people really care? Would he just be a job to someone? Would he need a carer? Will people always think he is small or different? When will others stop seeing his disability and start looking at how amazing he is? I tried to push the thoughts to the back of my mind as I needed to get some shopping. I guess the recent events had affected me more than I realised. Most of the time I focus on the positive but every once in a while that negative thought breaks through.

So I put on my brave face for the world.

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#nativity #luckyfew #family #love #wouldntchangeathing #iamable #dsa #itsoktobedifferent #adventcalander #makaton #festive #strongerthanyouthink

 

It’s finally arrived!!!

This is the advent calendar that we are in. Remember as you all open your first day of your calendar to click on the link to view this one. What a treat to see all these families put together a Christmas signing for you all to learn. Each one has been done on our own time, filmed by the family, and with no monetary gain. Just a HUGE desire to raise awareness and change perception of Down Syndrome 💙💛💙💛 #wcat #christmas #adventcalendar #lifewithsaoirse #family #dsa #downsyndromeawareness #siblings #changingperceptions #iamable

https://www.facebook.com/1858993587485982/posts/2198692843516053/

An exciting awareness project!!

https://www.facebook.com/1858993587485982/posts/2196773927041278/

So starting on Saturday the amazing wouldntchangeathing charity are releasing another awareness project. This time it’s seasonal and an advent calendar. Each day opens a new video of a family signing a Christmas word.

I am ultra excited as not only do I love all the previous videos and have good friends in them, this time we are going to be in it. Our family will be day 5. So please follow the charity to watch the “advent calendar” You can do this via Facebook, Twitter, or instagram!!!

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.