I’ve been quiet on the blog front recently as it’s just been busy. We’ve had a bunch of outpatient appointments. Freya got an infection in one of her jaw distractors, some sort of upper airway bug and an ear infection. It’s taken us over three weeks to shake these off, and although we are pleased she has not needed to be hospitalised she’s on high dose of antibiotics and not quite her happy self and we are constantly on amber alert. Not fun.
I have also been writing a blog entry about cuts and how these are affecting families like ours, a topic that will require some more consideration and craft before I air it. But the other day I was feeling particularly envious of those whose lives are not as medically complex as ours and it got me thinking not only about what we have missed out on, but what we have gained in the crazy last two years.
We have missed out on a bunch of “normal” baby experiences. From the very beginning our life with our baby was different. There were no cuddles after birth, no estatic rush of happiness and love people say they are overcome by when their child makes their debut in this world. Instead we had emergency alarms, chest compressions, fear and confusion.
We spent weeks in hospitals, waited anxiously for test results. Freya was month and a half before we could even take her home. For a long time there were no visits to relatives’ homes, no playdates. We still have not been able to take her to children’s clubs or many activities. It’s not that we can’t take her to places, but it’s hard work with all the equipment. It’s scary being away from our controlled environment where we have emergency protocols in place. Where your day to day life requires you to regularly push past your comfort zone it can be difficult to embrace further challenges. It’s also a risk management question. With us being on constantly working towards next operation date a bug can set us back months.
On the other hand we’ve gained an opportunity to bond with our daughter in a way we wouldn’t have if she was medically typical. I would have returned to work, Freya would be in a nursery. Life would be more fast paced, more varied and we would certainly have more opportunities and options (loss of which I do miss), but we would have lost the opportunity to spend as much time with Freya as we do now. Toddlers are crazy little people full of mischief and adventure and having less duties outside our home has given me ability to enjoy watch Freya grow. As acknowledging loss in its many forms is a reality for us, we try to celebrate the gains. The bugs managed at home, new makaton signs learnt. That fact she has exceeded so many expectations (including ours) and that through pure determination and will she is meeting milestone after another. Where we are all a lot less mobile we try to enjoy ourself at home, having good food and good friends visiting us (some even across oceans!).
We’ve lost a lot of trust we previously placed on professionals. When Freya was first born I thought everyone wanted to help; surely they would do their best to aid those faced with spirit crushing news of a child being so gravely ill? Yes, in principle and if it was not too complicated and cheap (preferably free). We found that particularly getting services at home was a nightmare; if it cost money and effort many would rather fob you off than help you, however desperate you felt.
Am I disillusioned and angry? Yes. Am I tarnishing everyone with the same brush, forgetting countless professionals who have made superhuman efforts to help us? Probably more than I am willing to admit (there are so many that we are forever indebted to for helping us along!)
I am not saying all professionals are bad, I am saying the position where we view them from has changed:whereas before if a mistake was made we would think it was an accident; now that benefit of doubt is gone. And this maybe the gain in it all; being more savvy; having the confidence to question; daring to argue; having the strength to fight.
We’ve lost faith in some sort of universal fairness. I am not a particularly religious person. In many ways, I’ve had quite a blessed existance and faced little hardship in my life. I’ve always had a strong sense of justice, perhaps a reason that attracted me to work in the legal industry in the first place. I don’t think I was particularly naive, but still harboured an idea of some sort of universal fairness, belief that though ups and downs everything would always end up OK in the end.
In many ways our journey over the last two years has opened my eyes to the striking unfairness that lurks around us. The world is a bleaker place than it used to be. We’ve witnessed too many little people not making it. Too many families broken by illness and death. Too many people let down by the system, too many lives irrevocably changed.
The gain? I suppose it is a question is whether you would rather have a more accurate view of the world and the human existance, even if it can be unfair and outright disturbing, or have somewhat a distorted view of it, happier, but partly blind to the suffering that is so intrinsically part of the human condition.
Having Freya has made me grow up more than any other experience I have had. It’s made us stronger as people, but also weaker, more vulnerable. Would I chose this life? Hell no. No one of us can fully control the losses and gains in our lives. But we can – at least aspire to – choose by which of them we define ourselves.
P.S. As you can see from the photo the little lady is walking. Despite her medical issues she is hitting milestones like a champ – walking, jumping and becoming pretty awesome at Makaton. We couldn’t be prouder!