The Calm After the Storm?

Newborns: wow.

Well little Rex arrived and turned me into a hormonal exhausted mess. 

I couldn’t handle not just the level of care he required, but also the way it took me away from activities with Audrey. Suddenly I can’t cuddle her on demand or sit with her playing all afternoon. I know she won’t remember, but I find it heart wrenching. I love her so much. I love cuddling her.

Having a second child hasn’t just rocked our world in terms of how tiring/stressful it is, it’s made me realise that much of what we went through having Audrey wasn’t about her having Down’s Syndrome. We always questioned it – we couldn’t decide if at the beginning we were reeling from the shock of the c-section or of her diagnosis. We’d never had a baby, so we didn’t know what it felt like, how you bond, how you love them. Film and TV would have you believe the baby comes out and is placed on the mother to immediate love and bliss. Both parents are instantly in love.

This is not our experience. Feelings for Audrey and Rex in the first weeks were quite functional. With both I felt quite shocked just to have a human suddenly on me – it’s quite something to get your head around – bump to baby. There’s relief that they are alive and then you just sort of numbly get on with things in a fog of “what on earth has happened??”.

The love part… Well we’ve found it takes time. You get to know them, their face, their smell. The bond grows slowly and then, when they become a little person who interacts and really shows some personality, wow, the love starts to peak – it’s like you’ve fallen for them after a romance.

It’s no secret I’m not a fan of the newborn stage. They are basically still a parasite but now live outside your body. You do everything for them and what do they give back? Ok, they are cute and cuddly, but they cry a lot. And poo a lot. They puke on you. They wake you up. And if you’re really lucky they might make your nipples bleed. Lovely.

But then they smile for the first time (Rex did last week, hurrah!) and they see you more and coo and almost play… And of course (please achieve this soon Rex!), they go longer between feeds. 

So of course I know this love grows and it gets better and better, but oh how hard it is to remember that with an unsettled baby to contend with. Every week gets better, but it’s still hard. Parenting is hard work.

I still remember chatting to a friend who doesn’t have kids, about how she’d like a nanny to just do all the hard stuff – the night feeds etc. And we had Audrey and I told her she wouldn’t feel like that once she had a baby – yes it’s tough losing out on sleep, but ultimately you want to be the one feeding your baby. It’s all part of how your bond grows. Going through the tough stuff together gets you to the fun part! And now I have to remind myself of that when Rex is wide awake for over an hour at 3am or when he’s screaming in pain from wind whilst on my shoulder. I need to do all this, no one else can – what’s the point of having kids? This is my job, my journey and at the end there is a big reward. We are already reaping the benefits with Audrey. 

Just think what these two crackers will be like together as best friends!

  
    
 

It was the best of times, it was the worst of times…

  
Look at us. A mother and son cuddling, such bliss. But of course this pic tells little of the realities of having a newborn. I don’t want this to be a negative rant, but I do want to share what we are going through right now… I mean, this blog may be filled with positive Audrey stories, but it’s really about our life and how having a child with DS doesn’t make our life that different to other family’s. So although I share a lot of positivity, it’s not because I’m sugar coating, she’s a joy.

Where we are now: Rex is 1 month old. He only sleeps in the sling (preferably whilst someone is pacing) or on us with some additional pats and jiggles as required. He likes to feed every 2-3 hours and he doesn’t like to lie still on his own for longer than about 5 minutes. He is currently a very difficult newborn and I am soldiering on with breastfeeding despite the early part being incredibly hard. In fact, it’s still hard. But they say it takes 6 weeks to establish breasfeeding, so in a couple of weeks we will hopefully be in a better place. I live in hope.

I recognise that each stage with a baby is a tiny speck of time in context of our lives – one day this kid will be festering in his teenage bedroom and I’ll be dragging him out of bed. But right now, I am dealing with the hardest thing I’ve ever had to do… and I’ve dealt with a surprise Down’s Syndrome diagnosis and my father dying… But this, this is another level – it’s intense 24 hour work. 

Of course Ted is a massive help – he is now in charge of Audrey am and pm before and after his full working day and all day on days off. Because very often, it’s only boob that will work for Rex. And that in itself is so hard. I’m striving to make breasfeeding work; to give him the best start in life etc,, increase our bonding, secure his immunity to various things… That’s all great, but oh the commitment to being there for him every 2-3 hours, when it can take an hour to feed and then settle him! And when he can’t be put down – where is the respite for me? I use that word – because with a “disabled” child you are given a lot of leaflets about support etc and respite care comes up a lot. Hey, maybe in the future Audrey will be a handful and we’ll want that option, but so far, no need. A newborn however – can they send over a respite carer for us now?? 

I guess I also feel robbed. We had a rough start with Audrey, I thought our “typical” baby experience would involve more blissful bonding and time to appreciate the life we created, no grieving, no confusion or worries, lots of gazing at him lovingly. But Rex isn’t letting us enjoy him. He is too needy for gazing. I’m genuinely terrified about how we “crack” the sleeping issue. How will he learn to sleep lying alone and still, when he currently sleeps upright and moving? Even on me in bed I spend much of the time patting him when he stirs (so often my sleep time isn’t real sleep time, it’s like being on watch for enemy attacks and dosing in between).

As I type this post I am pacing the house with Rex in the sling. Audrey is watching kids’ TV with her mouth open. If I sit down to rest, Rex starts grizzling and I have to get up and pace again. I’m exhausted, emotional and can only see a long stretch of this ahead of me…  I’m partly documenting this so that in a year or so (whenever the crazy thought arises) I can make a sensible decision about getting broody again; i.e; two is enough! Don’t let me do this again, please!!

Christmas!!

It’s Audrey’s 3rd Christmas! For her first, she still needed oxygen at night time, she was still breastfed and she had her first taste of food (puréed carrot) on New Year’s Eve.

Audrey’s second Christmas was a bit more fun for her, she met Father Christmas (and cried), she got to try some lovely treats (a chocolate Yule log that made her very excited!) and she was able to sit up and play with her toys (wrapping paper mostly).

And now we have a mobile little miss who can chat, in fact, she says “Missmass” – which means Merry Christmas/Father Christmas/Christmas. She loves to sing and sign Little Donkey with me and she is a big fan of mince pies too. We’ve even had two trips to see Santa with no tears.

It’s Christmas Eve and the little lady is asleep upstairs at Bibi’s house and she has no concept of the presents and fun that await her tomorrow… She does a great line in “Wow!” for present opening, which is going to be fun and I think she will be spoilt rotten.

Next year, we’ll have a little brother to throw into the mix (eek!) and I think Audrey will actually know a bit more about what’s coming, so excitement could reach fever pitch! I absolutely love Christmas, so I’m up for all the effort required to make Christmas magical for kids and I can even handle the frenzied build up; bring it on!

Merry Christmas everyone! We hope you have a lovely time, however you choose to celebrate. All the best for 2016 – wish us luck – we’ve got a boy on the way!

  

 

Bun in oven

I’m going to start this post by describing what it was like to find out “we” were pregnant with Audrey.

As someone who enjoys a surprise but wants the surprise RIGHT NOW, I peed on a few sticks unnecessarily before striking positive after about 6 months of trying for Audrey. I just couldn’t “wait and see”, if I had a pregnancy test in the house, I had to pee on it!

Once we had recieved the positive test we were hoping for, of course we said we’d keep it to ourselves until the scan… just tell a few friends… Actually we were super restrained in that we didn’t tell our family. We kept this secret as our scan was due just days before Christmas and we thought it would be an amazing announcement to make on Boxing Day with both mums and brothers in attendance. However outside of that big announcement, we did tell quite a few friends. Not least because of the logistics of me dodging alcohol during Christmas party season!

The fact is though, that despite my lack of morning sickness and general feeling fine, we were pregnant and that was that. And so it progressed and we had Audrey and the rest is history.

The second time we got pregnant (end of September 2014), we treated it in a similar way. We were on the same schedule, so the family announcement was set to be the same… Although this time an event prompted me to tell lots of people – as the company I worked for (for 8 years) went into administration and I lost my job. At about 4 weeks pregnant. So I was emotional and worried and kept telling people why this was such spectacularly bad timing.

At 10 weeks we lost the baby. I’m relieved we weren’t further along and even though it was still horrible, it could have been so much worse. Plus we had Audrey around to keep our spirits up.

And so at the beginning of 2015, we were back to square one, trying to make a sibling for Audrey.

I still hadn’t found a job, but we feared more miscarriages or a long period of trying, so decided to just keep on going and see what happened. Naturally I fell pregnant shortly before starting a new job. Oops.

With this pregnancy, we still told lots of people (we can’t help ourselves), but we didn’t feel anywhere near as confident. You just realise how fragile it all is and that people don’t like to talk about miscarriage, so you only really find out how common it is once you’ve had one and others start sharing stories.

So we’ve waited until 20 weeks until “coming out” as expecting baby number 2. Which means we’ve had the scan and this time we’ve found out the sex. Audrey is going to have a baby brother! We didn’t care either way, but I’m feeling excited about having a boy, as it’s new territory. We just genuinely feel blessed to have one child, let alone two. I’m scared of what lies ahead (looking after two?!!), but I’ve always wanted a big family, so haven’t ruled out a third (hmmm, let’s see how that goes).

When Audrey was born, I yearned for a “normal” child – I wanted to make another one quite soon. Well that’s not entirely true… I guess I just really wanted to know we would have a typical child or I wanted to fast forward to having one – to getting that child I was expecting to have in the first place. The great thing is, as time has gone on, I stopped yearning for that child for me, I just really wanted it for Audrey. A sibling, a playmate… a family with more to offer her. I realised that if we couldn’t have any more children for some reason, I didn’t care… We’d adopt to get that bigger family because we just want more than one child. I don’t need to produce a perfect baby to satisfy a need, I have that already, in Audrey.

  

Audrey’s 2nd birthday party

I realised I hadn’t shared Audrey’s birthday party photos… So here they are. We had planned a party in our local park, but due to the great British weather in July, we had a party in a pub!

Owl cake baked by Daddy.

   
    
    
 

Passing the time

Time is a funny thing. If you have 10 minutes to get ready and leave the house it feels like a ridiculous rush, but 10 minutes waiting for a bus feels like forever.

I’ve been pondering the passing of time a little lately because of Audrey. It’s well known amongst those of us raising a child with Down Syndrome, that things take longer. Whether it’s growing (Audrey wears age 12-18 months, but she is almost 2) or learning (she’s still not mobile and only has a few words).

It’s funny how often with a child (of any kind) that small pockets of time feel like forever. Phases of teething or fussiness or not sleeping… Often these things last a few days or a week, but every time I’m in the thick of a new phase, I think it’s going to last forever! I literally have to keep reminding myself (by repeating a sort of mantra; “it’s only a phase” or “this too shall pass”!). Do I get my flair for the dramatic from my mother? Ooh she loves a bit of drama (even if she says she doesn’t). Who knows? But when we hit a bump in the road, I hit panic mode. Worrying she’ll never sleep through the night again or never eat a breadstick again or never self-settle for a nap etc. In reality, you might get 7 mornings of 5am starts, but then you might get another 7 of 6.30am-ers, who knows?

On the whole, we have a pretty good girl on our hands. One that does self-settle and does sleep through; 99% of the time. She’s very loving, easy-going and eats well. And although these little phases feel long, but realistically pass by quickly, Audrey just isn’t growing up very fast. So we also have the flip side of time passing very slooooowly.

This is magnified by her peers. The gap is wider than ever now that toddlers younger than Audrey have more words and can walk confidently. It’s all very well when we are at home with Audrey in our ‘bubble’; in our bubble she’s a genius. We cheer like crazies every time she gets a motor skill spot on, every time she attempts to stand (she’s pretty far from standing, but she is just starting to push up onto her feet if we hold her under her arms), we look at each other filled with pride when she says and signs ‘Mummy’ and ‘Daddy’. Audrey gives us many reasons to feel proud.

We have just been to stay with friends who have a daughter 3 months younger than Audrey and this made her slow progression all the more obvious. We stepped out of the bubble. I mean, I had Audrey out in my arms when this child was still growing in her mummy’s tummy and yet, here she is saying all our names, running to collect whatever colour ball she is told to… Even my husband admitted a “pang” and hey, it’s only natural to get those feelings, how can we not?

What I have realised is how my sadness has shifted since Audrey’s birth. It’s no longer “Why us? This is so unfair”, now it’s all about her. We were not unlucky to have a child with Down Syndrome, but Audrey is unlucky to have it affect her life in a negative way. Because it’s not all kisses and cuddles (ok, 90% of our day is I guess), but it’s a life faced with “disability”. Which is still a bit of a dirty word for us, but it’s true that she doesn’t have the same level of ability as her peers or even those younger than her and that sucks.

What I took away from our visit with our friends, was that Audrey and Ivy should have been running around together, playing games, holding hands, chattering away… But instead Audrey was bum-shuffling as best she could and Ivy was from time to time upsetting her with dangerous (loving) cuddles! She kept squishing her older friend who is much smaller than her. And yes, I felt a pang of jealousy that Audrey couldn’t do all these simple things her younger friend can, but I didn’t feel bad for us, I didn’t feel upset that we had been dealt a bad hand, I just thought how it sucked for Audrey. And the only way I could feel good about it was to think; one day they will be great friends. One day they will hold hands and run around together and Audrey will teach Ivy a little something about being different and being patient and hopefully we can all laugh about the “death cuddles” and Audrey can have a go at flooring Ivy with a cuddle of her own and we’ll all have a good chuckle at how time has finally flown and how grown up our kids are!

  

Friends and Family

I’ve read blog posts where mummies (of children with DS) have said “you certainly learn who your friends are” (after a Down’s Syndrome diagnosis), so I just wanted to write a post in praise of our friends (and family).

Because we certainly learned who our friends were… and they were exactly who we thought they were. 

Lots of worries flashed through my mind in those first weeks of Audrey’s life. And one of those worries was that some people may not want to see us anymore, because our child had been born with special needs. I feel like an idiot as I type that now, but at the time it was something I genuinely  thought. I worried people would feel awkward having to say she’s cute (when really they would be looking at a face that just screamed Down Syndrome and therefore ugly) and that they wouldn’t be that interested in visiting her. 

Shall I enlighten you as to how our friends reacted?

Well, let’s see… EVERYONE wanted to see her. They were all interested and positive and supportive and… I suspect exactly as friends are when any baby was born, but it felt like they were extra in love, extra supportive.

Maybe this is just how people are when a baby is born (I have no comparison to a “typical” baby), but with Audrey it was like we had made a little celebrity. Friends went out of their way to shower her with love.
Of course it is an unwritten rule that when you see someone’s baby you have to say they are beautiful or cute or some positive adjective, even if the baby looks like a wrinkled old man or yoda. But you don’t have to say you love them. I didn’t expect other people to love my baby, but they did. They loved her. And they were wonderful at showing it and saying it. Not just through gifts of clothes or toys (although we were well and truly showered), but through visits, texts, emails, gifts of food (for us), lots of help, support and lots of gushing about Audrey. Over compensating? It didn’t feel like that. Honestly.

And as she’s grown, people haven’t shyed away or avoided contact, they’ve thrown their arms open to give the B-W family (but mostly Audrey), a massive hug. 

Why on earth did I expect any different? 

Ted are I are both blessed with an excellent bunch of school mates who still make an effort to hang out, as well as lots of cool university friends, Brighton friends, work friends and now NCT (antenatal class) friends, all of whom have been great. 

I have so many positive friend moments that play through my mind… Becs coming with me to hold may hand through the scan that discovered Audrey wanted to get out, the tearful hushed conversation with my brother as I explained why we had struggled to confirm her name, the dreaded tearful phone calls to Claire and Mary the morning after she was born, which were met with declarations of instant love. Unconditional love. Katie and Claire standing with me when the doctor confirmed Audrey’s heart was fine and the tears flowed again… I’ll stop there as I can’t name check everyone and I don’t want anyone to feel left out!

The unconditional love is the key. No one was planning to love her only if she was cute. Or only if she could walk at 12 months. Or grow up to be a genius. 

They love Audrey because she is a little piece of us, their friends. Oh and she’s awesome.

Here’s a little dig through the archives for Audrey pictures with friends and family…

   
                  

Stuff and things 5

So, you may have seen from my last post that I recently lost my job. The company I worked for had been struggling for a while, but when it finally sank it was still a shock for those involved.

Audrey had been ill for about 3 weeks, it started with a cough and cold, progressed to sickness, the cough hung on and she was off milk and/or food most of the time. Smiles were at an all-time low. We only really felt like she came back to us just over a week ago, when the smiles and claps returned and her baby-babbles reached an all-time high. She chatters all day now.

Workmen are ripping down a balcony from the back of our building and fixing the front facade, so Audrey’s nap times are fraught with banging, drilling and men shouting!

Anyway, her being ill, my job of 8 years ending abruptly (with salary owed), men on scaffolding watching us in our dressing gowns… it’s been a rough ride recently.

Last week (thank goodness), my husband had the week off. We visited my mum and brother (Nanny and Uncle Graeme) on Sunday and Monday, then I had my hair re-brownified (in preparation for interviews and money saving). Tuesday Audrey was at nursery and Ted and I went to see Nightcrawler. How odd it was to be alone for lunch and then in the cinema all afternoon!

Wednesday my mother-in-law (Bibi) came over for lunch and Thursday was another nursery day so… Ted and I went to see Interstellar.

Friday we had lunch with NCT pals. But now the spending must stop and the job hunt must get serious…

Coffees consumed: at least 10
Burgers: 4
Milkshakes: 2
Pastries/cakey treats: 4
Fudge: too much
Beers: check with Ted
Audrey smiles: too many to record

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P.S. If anyone was paying attention when I teased Audrey having a modelling job… Sadly her photo wasn’t used in the end. But, if you’ve seen the Lidl wooden toy advert on TV this week… You’ll catch a glimpse of her friends Huxley and Zakir!

The elephant in the room

So here’s a question for you, do you tell people your baby/child has Down’s Syndrome (obviously you don’t if they don’t have DS!)?

It’s certainly not my opening line when meeting new people, but I do tend to casually throw it in there just to clear the air and acknowledge the obvious.

Even though Audrey looks less and less “downsie” (our choice of phrase, one used to be cute, not offensive) to me everyday, I do know that she has the characteristics and strangers will either clock this and know, or at least wonder.

We actually do sometimes start to think it’s not obvious, but then we look at other babies with DS and she is quite clearly in their crew. It’s funny because it means we often look on other babies with extra “ahhhs” because they look like our baby.

Our first experience of a stranger actually acknowledging Audrey’s DS before we’d said anything was a barmaid (early 20s?) in a pub we were celebrating my Nan’s 95th birthday in. She just said “Down’s Syndrome babies are extra cute aren’t they?” And to be honest I felt a little surprised for a second (only because I hadn’t heard anyone just come our and say it like that) but I just smiled, said yes and moved on. But it did feel strange. Oh so they can see it…!

Another time, we were at a friends’ BBQ where lots of families we didn’t know were milling about. A child of around 6 was playing near Audrey and asked me why her tongue was sticking out. I just said she was dribbly and teething and it was just something she does. But at the time I had a little moment where I realised I was so used to Audrey’s tongue sticking out, it hadn’t occurred to me that this might be ‘something different’ about her that others would notice.

One of many strange worries I had in the early days, was of someone recognising her DS and saying something very unpleasant. Perhaps asking me if she was ‘retarded’ or a ‘mong’, neither of which have cropped up at this early stage. As time went on, I did start to chastise myself (“What decade did you think we are living in?!?”), but actually had a mum of a 3 year old boy with DS confirm someone did once ask if he was a ‘mongoloid’. I was stunned, but she said it was a very old lady and she was actually very nice, she just used a dated word and meant no offence.

In our short 15 months in this world, we haven’t had a lot of negativity to deal with. In the early days, there were some people who struggled with what to say and made some comments that were… Awkward… But mostly well-meaning and not nasty. People just saying how ‘devastated’ we must be or how ‘awful’ the news was… Which, once you’ve moved on and embraced the baby you’ve been given, is not they way to describe the happy event of having a baby.

My uncle also had a classic line… When we were discussing sleep and night feeds (which every one is obsessed with when making baby small talk), I referred to our NCT group and said we were lucky as some of the babies were waking a lot more than Audrey… To which he said (somehow thinking I was taking about a group of babies with DS and that some of them were ‘worse'(?) than Audrey); “Oh yes, some of them can be very disabled, can’t they?”. Yeesh.

In fact that was probably the main crux of any early negativity – misunderstanding that 90% of the time I was entering into a discussion about babies in general, not specifically babies with DS. Telling my mum we had started baby sign; “But she’s not deaf, I know some of them can be, but you can tell she can hear”. Cue discussion about baby sign being useful for all babies.

Mostly I worry that it my own insecurities/defensiveness that makes me read innocent comments as negative. When people ask about the possibility of us having baby number 2, I always feel as though they are surprised when we say we do want more children or I feel the question is worded as “So do you think you’ll have any more children?” and the end of the sentence (that is unspoken) is “…after what you’ve been through with this one?”. Yes, I’m reading into this too much!

One of the strangest places to encounter negativity (which was really just someone being honest, but made me uncomfortable), surprisingly came from another DS mama. I was at our pre-school DS group when Audrey was probably only around 5 months old and I was keen to meet a lady who had chosen a nursery near us for her little boy with DS and I wanted to know what the nursery was like etc. She came to the group with her new baby boy (without DS) as her oldest was at nursery that day.

She told me I was lucky Audrey kept her tongue in her mouth (things have changed a bit since then!), because the tongue hanging out “did not look good”. And then she told me how they had the amniocentesis for their second child as they “definitely didn’t want another child with DS”. Hmmm, I think I said nothing at that point. I asked about the nursery and she said they picked it because they had lived on the same street… so that wasn’t the glowing reference for the place I was hoping for. I haven’t actually seen her since, but it was certainly interesting meeting someone who felt that having a child with DS meant they had to take screening that bit further to ensure they didn’t have another. Ted and I have said that if we are lucky enough to have another baby, it’s probably not worth bothering with the screening as what difference would it make? We wouldn’t abort and although a bit of warning might help us prepare, we had no warning with Audrey and that turned out fine! Ha, well, better than fine – awesome!

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What say you?

I’ve read a few posts about the best way to react/what to say when a friend or member of your family has a baby with DS and a year down the line I feel I can add my 2 cents.

As with anything in this world we’ve found ourselves in, I often wonder what I would have been like on the other side of the fence… If a close friend rang me to say they had just had a baby and – shock – the baby had DS… Would I have said the right thing?

A couple of weeks ago we were at my brother’s 40th birthday party. Many of his friends had last seen me when I was pregnant, or even before that, none had met Audrey yet, a few had seen her via Facebook pictures and videos. Now, the drink was flowing and it must be tricky chatting to someone who’s had a child with DS – do you make reference to it or not? But two of my brother’s friends (both male) had similar conversations with myself and Ted that we discussed the following day. To be honest, we just laughed/shrugged it off, but we acknowledged it’s a shame people have this response… The general gist (and they were in no way trying to be offensive, both the complete opposite) of their chat was; how well we were “coping”, how it must have been “devastating” and what “a blow” it must have been… Even typing this I’m thinking, “oh it’s not such a bad response”, and as I’ve said, they weren’t trying to be negative, but the truth is the best responses have been those who either don’t mention it and just ask how she is, how parenthood is treating us etc. or those who ask questions about DS in a genuine ‘what does it mean’ kind of way.

Yes, at the time we probably were devastated, but that seems like such a wrong reaction now. With the knowledge we have now, I’d never describe it as devastating. I’d say we were shocked, but hey, she’s perfection now, so we’re over it. I also wanted to laugh a bit about “coping” because at the moment we are just coping with having a baby… Same as any other parent, no one would mention how a parent of a typical baby was coping so well with handling their little one.

Our friends have actually all been fantastic, we really can’t complain. Audrey has a massive fan club, a ton of love and 99% of the time people say the right thing.

But back to responding when you hear the news that someone you know has had a baby with DS:

1. Congratulate them. Please. This is by far the best response.
2. Ask the normal questions about time of birth, weight, whether the little monkey is sleeping well etc.
3. Do express concern over any health issues etc, but don’t make assumptions about what the DS means (oh you’re breastfeeding? I heard they can’t breastfeed? Does baby cry? I don’t think they really cry much do they?).
4. As time goes on, be mindful that milestones might be delayed (we are constantly asked if she is walking yet and we haven’t got to crawling yet). Perhaps just asking how the baby is doing in general is an easier question for parents to respond to. I’m very proud of Audrey’s rolling, babbling, waving, clapping, kisses… Oh I could bore a lot of people with things she’s achieved, but it’s not my favourite thing to explain we don’t know when she’ll be walking.

Just try to remember, a baby coming into the world… That’s an amazing thing that needs to be celebrated. I wish we’d have celebrated more in those first difficult days… We are certainly making up for it now!