Another good nights sleep but again a subdued Ryan today.

After a good nights sleep Ryan has been rather subdued today.

Quite a good day today.

If you have the time, please read the following (edited) which sums up so well the way we feel about Ryan, who also can't eat, drink, walk or talk!

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here,  my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state.  He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now.  No matter what we do for Ronan  he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment.

 Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss.

This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

Parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design

A slightly better night and day, with Ryan able to attend Springwater school for three hours.

A rather traumatic morning for Ryan. He had a seizure at 5am and was suffering from asthma like attacks as I arrived for his ERT. He was also very "snotty" from both his trachy and nose. Add to this the fact that we couldn't access a vein plus some tummy pain and you will get the picture. He did eventually fall asleep for an hour before I had to leave.

Another "looking good" day.

Ryan looked good today but is still not giving me a smile.

I picked Ryan up from Springwater special school today. He looks quite relaxed BUT still refuses to smile!
He is on a new feeding regime in an attempt to reduce the pain from excessive wind. We have also been taught to use a new tummy massage to encourage wind and reduce the need to suction the wind out via his feeding tube. So far, it seems to be working.

Ryan is back from Alton Towers but is still not smiling, although he looks quite well.
The charity function to raise funds for Ryan was fantastic and it looks like a few thousand Pound's will be coming his way. I will post full details of the event later.

Ryan is still not quite with us. The problem is, we don't know what is wrong and he can't tell us. He is off to the MPS conference at Alton Towers and we hope seeing some of his "Hunter" friends might cheer him up.
I am off to a dinner tonight which follows a charity golf day for Ryan.

A quiet day today. Ryan has been to Springwater school but he is not as alert as he used to be. We hope he improves again soon.

The  good news is that Ryan received his ERT today. The not so good news is that he is still under the weather, for what reason we know not!

Not a good day for Ryan today.

Ryan was asleep when I called at lunchtime. Apparently he had a good morning.

Just caught Ryan as he was off to the wonderful Springwater school for a couple of hours. He looked quite relaxed and gave me a three quarter smile.
From next week he will be going to Springwater three times a week for three hours each time. I hope he stays fit enough to do this as he always seems happier once he has been there. If staff are available, he will also get an one hour visit on Fridays.
http://www.springwater.n-yorks.sch.uk/

After a good night Ryan looked quite relaxed this afternoon and even managed a small smile for me. A change to his feed and antibiotics is being introduced in an attempt to minimise his pain from excessive wind.





Ryan with Bex at rhe Donkey Sanctuary open day.

  

At last! Paula accessed a vein first time and his Enzyme Replacement Therapy continued without any problems. Ryan had a reasonable nights sleep and looked fairly relaxed. I got half a smile to match the half I got last time I saw him.
It looks as if ASGNSS, who fund ERT, are to be disbanded, which leaves the future of Ryan's treatment in the balance. Whilst ERT  is not a cure, it prevents progression of the disease where there is no central nervous system involvement. So, it's letters to our MP, David Cameron and anyone else we think can help.

It was the donkey sanctuary open day today and that is where we took Ryan. Unfortunately he was not really in the mood for the trip. He had a bad night and he looked worn out today. Let's hope I have better news tomorrow.