A post too late 

So as today’s cardiology follow-up appointment managed to strip away any joy I might have started to feel, I realise that I missed an opportunity to blog about something great that happened just days before and I’ve let that greatness get swallowed up by the events of today.  And so I’m going to get the crappy stuff out of the way, and then I’m going to attempt to undo the feelings I have been left with by taking myself back to the weekend when great things happened.

The crap bit

Today we had our first cardiology follow-up appointment at our local hospital. Up to now, all of Freya’s cardiology concerns have been taken care of at Leeds General Infirmary. It is an amazing hospital, and although it was there that I was delivered some devastating blows, I associate them with common sense, and with the treatment that has helped to get Freya where she is today.

At our last appointment, in September, Freya’s Cardiologist was sufficiently satisfied with her progress that she felt it would be appropriate to refer us to our local hospital to make things easier for us in terms of travelling. I wasn’t concerned about the travel, but the Dr thought it made sense and who was I to argue? When the local appointment came through I must admit I felt more than a little trepidation. I had built a lot of trust in the Leeds doctors and believed that Freya was in good hands. Even the facility itself feels right. Clean and clinical, but with special touches that make it feel like a good place to be with your child. The staff are friendly and welcoming and seem intent on making the experience for both the child and the parent as painless as possible.

On the other hand, I associate our local hospital with confusion and pain. With anger at not reaching a diagnosis. With sadness of memories of holding onto the bars of a cot as I watched my lifeless daughter receive fluid resuscitation.  Of despair and fear of watching my child slip away from me without ever knowing the cause. It’s where they told me Freya was a 10 on a scale where 11 was dead.

If you’ve followed my blogs, then you might remember it is the place where I experienced my first ever anxiety attack. A sudden onset of emotion, an inability to breathe, a choking sensation and a desire to slide down the wall into a heap on the floor and cry myself a river.

That’s where we went today. We arrived, on schedule, at 12pm for Freya’s 12:15 appointment. She was weighed and measured, and we were asked to wait in the waiting room. We did as we were asked, and waited. And waited. And waited. Two hours later we were finally called. I am grateful to Freya for being such an insanely content and happy baby for that two hour wait because whilst it felt like an age, it wasn’t half as unbearable as it might have been. Apart from the anxiety that was building as we got closer to school pick-up time and the car parking time limit.

We spent an hour with the Dr who turned out to be a paediatrician with cardiology specialism who by her own admission was not the right person to handle Freya’s case. She explained the three tiers of NHS care – primary (GP), secondary (paediatrician) and tertiary (consultant specialists). She felt that Freya’s case should be handled by the tertiary level and as such our former care was more appropriate.  As a result, although I came away with the reassurance of a ‘no change’ echo, I gained very little else except more stress and another change as we are to be referred to yet another medical professional. Cue meltdown in the baby change room as I called the school to tell them I wouldn’t be there to collect my son in time.

It’s been what I would call a ‘meh’ kind of day. I’ve been left with some of the doctors words ringing in my ears. Words I had started to forget about. Risks. Rupture. Stenosis. Myocardial Infarction. A statement that Freya will continue to be followed up into adulthood and that the risks associated with this disease will not be known until later in life. It’s like a noose around my neck.

How the hell do I come back from that?

Well, I can focus on the positives. Freya was not phased by today. She remained her usual, happy self. She gave the doctor a run for her money with the echo, grabbing the probe and trying to eat the wires! And she practically butt-hopped her way off the bed when she was meant to be lying still for her ECG. The result was a good one (not ‘good’ good, but better than bad). The doctor was gracious enough to admit that Freya needed more appropriate care and to make the referral. We got a new prescription for an increased dose of aspirin, and a promise of the letter that might just finally bring aspiringate to an end.

Small victories for battles we shouldn’t be fighting, but victories nonetheless (even as I type I’m unconvinced that I’m not just clutching at positive straws here).

So what was great then?

What was great was the weekend that preceded this crappy day.  This weekend I traveled with my little family to a little place called Liverpool (or more accurately, The Wirral) to meet my kawabuddy.  A woman I had never met, and had never exchanged a word with. A woman with whom I have communicated by text every single day for the last few months.

That woman is Charlie’s mum. Charlie was diagnosed with Kawasaki Disease around the same age as Freya, a number of weeks after we were dealt the blow. We came across each other through one of the Facebook support groups and with our KD journeys being so similar we were drawn to each other for support. Babies as young as ours just didn’t seem to feature in any of the circles we looked to for support, and so we were there for each other. After the initial trauma of the situations we were faced with, we quickly realised we shared lots of things; we have the same sense of humour, we think the same things, sometimes say the same things; we are the same person (that one’s for you sexy Jo 😂😂😂)

Anyway, she told me a while ago that she was going to hold a ‘trick or treat’ event for Halloween to raise funds for Hospital at Home, an organisation that administer medical treatment to children in their own homes to allow parents to be parents. When I first saw the event on Facebook I wondered why she added me. So I asked; “Did you add me to show me what you are doing, or because you want me to come?” You already know how that turned out!

So I went. My husband and I and the 3 kiddiewinks went on a roadtrip to help support my new found friend in her attempt to ‘pay it forward’. She hoped to raise a few hundred pounds. She raised over £1400!

Of course I was anxious about meeting Jo, but I was also anxious to meet her. I was worried we wouldn’t like each other in person, but deep down I knew that couldn’t be possible. I was worried that if we didn’t connect in person like we had over thousands of text messages that we would lose what we had. That the support we had given each other would disappear now that it was more tangible than ever.

My worries (and no doubt hers) were unfounded. Luckily I’ve gained a new confidence in taking the plunge and doing things I might have previously shyed away from. I mean, life’s too short isn’t it 😏. So I didn’t have any expectations of the evening, and I certainly didn’t want her to feel like she had to babysit me and my family when she was hosting the event. But we managed to get a few minutes here and there to chat and it was easy. Just easy. So we arranged to spend a few hours together the following day, before we made the 3-hour journey back home.

I will always remember that Sunday as a special day on this journey.  The day that two families, strangers to all intents and purposes, spent some of the easiest hours I’ve spent, walking, talking and watching our kids play like they had grown up together. Often Jo and I would stop and turn around to realise that we had left our husbands and children way off in the distance whilst we said all the things we’ve ‘said’ before (via text) but with the added feeling of closeness that came from sharing this ordeal, in person, with someone who understands it. Really understands it.

And of course, Freya met Charlie 💙💖.

This blog could never explain the bond that has grown between two women that are inextricably linked by an experience that we wouldn’t  wish upon our worst enemies. We have cried together and laughed together. We have been angry, and sad, confused and concerned. We have been tired, yet stayed up all night chatting and researching. And we’ve been fed up, I mean completely and utterly fed up, but managed to leave each other chuckling in the face of this godawful bastard of a disease.

Wherever this takes us, I will always be thankful for finding a likeminded person to share this with.  Remembering that is what makes this crap day great again.

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