Feeling the love

There is a quote from one of the shows I am strangely addicted to at the moment – 24 Hours in Emergency. In the  opening sequence, one of the nurses remarks that the moment when you are in Emergency and you’re really sick and you’re wondering whether you are going to live or die, silly things go out the window and ultimately what is important is realised, that you are loved and that you’re not alone.

Yesterday, a parcel arrived from America.  I have mentioned previously, that when we believed that Matilda had Doose Syndrome, I went online and joined a Doose support group. Women and men who were invaluable and vital to us in those early struggling days. And now,  although we are no longer under a Doose diagnosis, we still consider them to be our Doose family and hold them close to our hearts. So when this parcel arrived from a beautiful Doose mum, I didn’t know what to expect and when I opened it, I burst into tears.

It is the most beautiful handmade quilt with messages of love and support to Tilda and to us from Doose families everywhere. We are blown away by the kindness and the thoughtfulness of these wonderful families who are going through their own tough journeys. 

It seemed very fitting to post this today.  March 26th is Epilepsy Awareness Day. This is a condition which is very misunderstood and very underfunded and Doose Syndrome even more so. If you get the opportunity, please take a moment today to learn a little more about this heart wrenching condition which anyone can get and for which there is also no cure. Visit Epilepsy Australia and The Doose Syndrome Epilepsy Alliance to learn more.  

 

To our Doose family, we say thank you. And in this time of terrible sickness, we do know that we are loved and that we are not alone.Thank you to everyone who has made us feel that way. From the cards and presents we have received to those who comment on this blog, we feel the love and it helps more than you know and more than I can convey.

 

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I’m tired

I’m very tired. Maggie and Matilda have been tag team waking in the night with varying degrees of ease in being able to get them back to sleep. It can be hourly. And my once easy Maggie has become whingey and hard to settle during the day as well. My mantra of This Too Shall Pass is helping as is coffee and diet cokes but lack of sleep leads very much to despondency. Cuddling Tilda in the night to try and get her back to sleep is both lovely and frustrating. Lovely to be able to hold her but frustrating when it doesn’t seem to help. Oh, to have a child that can tell me what the matter is.

This is it isn’t it? The gritty, real bits of being a parent. It isn’t all about overwhelming love. Sometimes I find both my children very irritating. In Matilda’s case, it pains me to admit that. And fills me with even more than the average mother guilt. I’m not supposed to to get annoyed with her because she is so sick. And in the next couple of years, I am going to lose her completely and wish with all my heart that I could have her back, wish that she could be here just to annoy me. But I am also just a human and can only deal with the now. And at 3 in the morning, when I have just fed Maggie and I hear her stir and start to make noises, I am annoyed.

There is a sound that she makes that drives me crazy. It is a moaning whine and although it can be a happy noise, it is not always entirely clear. It is unbearably frustrating to not know what is wrong, to not even know whether there is anything wrong and to not know how to help. Helplessly annoyed and frustrated. I feel wretched that I can get annoyed with her making this noise as I am well aware that it is impossible for her to make any other. But annoyed I am.

The only way is to get a bit zen. Breathing in and out. Remaining calm. When all else fails, as it did one night down in Anglesea, I had to leave the room and go outside and look at the stars. Breathe.

There is something about the middle of the night that magnifies everything. Things seem dire in the a.m. and I have found myself in tears on occasion. But come the morning, things always seem better. Tilda laughs at Dora and Maggie gives me one of her beaming smiles. I have places to go and people to visit and my days pass pleasantly for the most part. I don’t want to start dreading the night but I can see that looming.

I have realised that the respite I once deemed unnecessary might now need to come into play. A night with only one child waking would be pretty amazing and if I can express so that Simon can do the night feeds, I may even get a full nights sleep. The Holy Grail for all parents. And so I will be contacting Very Special Kids and seeing when they can fit Matilda in for a night or two. And I will dismiss my useless feelings of guilt because I do know that is exactly what they are. Useless.

As for coping with Maggie, I do what most parents of small babies do and that is whatever works. Currently, she seems to want to be held or on the move. So we walk in the pram, go for a drive or I sit and hold her. And when she cries, I try and remember that This Too Shall Pass.

A Jack update – he continues to fight hard but has had to increase and change some medications to combat the increasing breakthrough seizures. He and Nicole remain at Very Special Kids to receive the necessary care and we try and visit as often as we can.

Apart from the night waking, Tilda continues to do well. She is still tolerating her increase in feeds and reports from school are glowing and positive.

oxxo

Time out at the beach

The girls and I have spent the last couple of weekends down in Anglesea, hanging out with good friends and beautiful family. The weather has been so warm, it was great to get down there and get on the beach. I had some lovely swims, Tilda got her feet in the sand but spent much of the time snoozing in the sunshine. Maggie enjoyed hanging out in awesome papsan chair and a relaxing time was had by one and all.

 

 

 

 

 

 

 

 

 

 

I am saddened to report that it has been another terrible couple of weeks for the Batten community with the passing of 7 year old Dylan, Milos from Serbia and 17 year old Skip. We also learnt that Skip’s sister Puck passed away a few years ago. Rotten, stinking disease that it is. My thoughts are with their families.

Our beautiful Jack continues his fight, with some good days and some bad. The seizures continue to break through, even though he is sedated. There have been some beautiful moments for his mum Nicole though, some smiles and connections which I know she will treasure. We try and visit as often as possible and I love seeing our small ones together, they are even colour coordinated! Please continue to have Jack and his family in your thoughts.

Health-wise, Matilda has been having a pretty good run of late. We seem to have the vomiting under control and have even been able to increase her feeds. She is cheery and bright. She came home from school yesterday with a Gold Star! Her teacher wrote that if she was at a mainstream school, she would have been sent to detention for talking in class but as this was Glenallen, the rules are different! They are delighted with her vocalisations and the Intensive Interaction program seems to be working really well for her. Although she sleeps a lot of the morning at school, it is such a benefit for her to go each day and we love getting the feedback that she is happy there.

In other news, we have had a few car troubles over the last couple of weeks. It began when I accidentally locked Tilda in the van. On a very hot day. Cue the panic, the fire brigade, the police and an ambulance. For want of a better solution, the fireman smashed the passenger door window. Tilda slept through the entire thing and was completely bemused by all the fuss!

Then, on a drive to visit Nicole, the van started stalling in the middle of heavy traffic. On a very hot day. Cue the RACV (roadside assist), a tow truck and a maxi taxi to get us home! Once again, Tilda slept through most of it and was bemused by all the fuss! She did enjoy the ride home in the maxi taxi though!

I am pleased to report that the van is now completely fixed and many thanks to the lovely David from Fleetworks who not only covered the cost but delivered the van to our door when the work was complete. It is now running like a dream.

That’s all for the moment. Sending much love to all from all of us.