Life story memories

After nearly sixteen months in hospital and nine months in our family, Russell is home! We're so pleased that he's finally here, and our family and friends are queuing up to visit and meet him.

As we were packing up his hospital room we came across lots of items that we had no idea where they'd come from. Teddies, toys, blankets and even clothes regularly appeared in his room when we weren't there, we'd ask the nurses who'd left them but they often didn't know.

As foster carers, one of our most important tasks is helping a child to keep track of their life story whilst they're with us and beyond, and a big part of that is tangible memories such as little outfits, presents, photos, artwork etc. with an explanation of their meaning. A teddy near a hospital cot could be a gift from a nurse, it could have been left by a charity who provide little presents for children in hospital, it could have been passed on by a social worker from another relative, it could have been brought by a parent during contact, or it might not even be Russell's! We had kept a particular blanket early on that said "My mummy loves me" in the corner, feeling sure that it was from Russell's mother, and then had found a tiny label that proved it was just one from the hospital store cupboard.

Thankfully, the play specialists on the ward where Russell spent the most time were very good. They took photos of him every week, made little hand and footprint paintings every couple of months, and compiled these together into a folder as a record of his time there, including bravery certificates for his various procedures. As he grows up he'll be able to look back on these and see how tiny he was as a premature newborn, how quickly he grew, how much he smiled even with tubes and machines everywhere, and will hopefully realise that even though he had a long hospital stay, he was very much loved and cared for first by the nurses, and then by us.

New adventures

It's been a couple of months since I updated the blog, because we've really just been rolling along as a family and haven't had anything interesting to talk about - Peter is progressing well and delighting everyone he meets, and Russell is adorable but still in hospital. I'm not going to lie - it's been hard, because this exhausting life of driving back and forth for 4 hours every couple of days and building up our hopes for discharge only for it to be cancelled at the last minute has already been more than double the planned number of months. Thankfully Russell is healthy and the issues with discharge are mostly logistical, so we will continue to wait, and hope that it won't be too long before he's home.

Our big news is that Peter will soon be our legal son! We first expressed interest in adopting him nearly two years ago. We've been assessed and approved as adopters, the placement order we've been waiting for has now been granted with a plan of adoption by us, we're going to matching panel next month and will put in our application for an adoption order straight away.

He was placed with us age four years and three months, having had a failed foster placement already and carrying a label of "unadoptable" due to his severe autism and extreme behaviours. His social worker has always had a soft spot for him and could not be happier for us all which is lovely. It feels like an exciting new chapter in our lives is starting!

It's the most overwhelming time of the year!

It's been a strange Christmas this year. Esmeralda's mum has been staying with us as usual, but we spent half of Christmas Day with Russell in his hospital room, and the other half travelling to and from the hospital (on lovely quiet roads though, that was a definite plus!) Russell enjoyed the experience and we took some lovely photos of him with his stocking full of presents, sitting in his new jumperoo, and surrounded by shiny wrapping paper! Even though we only took five presents to the hospital for him Peter became overwhelmed after about two so we stopped there. The room is sweltering and small, the lights are very bright, there are so many different smells and nurses coming in and out so we can't even keep the door closed and dim the lights. He also absolutely hates it when young children or babies cry, and unfortunately there are a lot of crying babies in hospitals!

Peter did very well considering but spent much of the time on high anxiety alert staring into space and talking nonsense, zoned out watching Tractor Ted and having mini meltdown after mini meltdown. He has barely slept since Christmas Eve and hasn't really been able to enjoy anything. He really needs life to return to normal so we'll be having some quiet days, taking down the decorations, ignoring the rest of his presents until he is better able to cope, and eagerly awaiting the return of his clubs (he does running, horse riding for the disabled and swimming lessons) in a week or so when term starts again.

We're looking forward to next year when we'll all be together at home and we'll be able to relax and celebrate in a way that meets all our needs. We've had enough of hospitals - Russell included!

Mary, did you know?

We have two Pentatonix Christmas albums in the car at the moment, and a song that has particularly struck me recently (whilst belting it out at the top of my voice on the motorway to and from the hospital to see Russell) is "Mary, did you know?"

It makes me think about the little ones we're privileged to care for, and their futures. I feel for the birth mothers who were the first to hold these newborn bundles of potential but won't be there for the rest of the journey. We don't know what the children's special skills will be, how they will make a difference in the world or anything about the men and women that they'll become, we just try to do the best we can whilst they're with us. I'm sure Mary wasn't a perfect parent all the time, but she raised an amazing man!

Another special one year old

Little Russell is nearly one! This is a huge milestone for all babies, but especially for Russell as there were more than a few moments in his first year when no one was sure whether he would make it through. He's stable and doing well now. The doctors would like him to put more weight on but he's not underweight for his corrected age and he's stopped frightening everyone when he gets a cold! He's still in hospital, but we hope to have him home in the New Year and then his life can really begin!

We have presents, bunting, banners, helium and normal balloons, a wooden cake if he's not in the mood to play, a chocolate cake if he is, a big foster brother keen to "help" with the cake, a birthday vest for him wear and a builders tray to contain the mess. All the ingredients for a memorable 1st birthday party! A good friend of ours with awesome camera skills is coming to the hospital to take photos. Russell won't remember any of this of course but he will be able to look at the photos in years to come and know that we celebrated his special day in the best way we could!

Buying for a disabled or developmentally delayed child

With Christmas approaching I thought I would do a post to help friends and family of children who are not developing typically choose a Christmas present. So here's how we like to choose gifts for our special little ones.

1) Forget about the age it says on the box!

This can be hard as it's so ingrained in us that baby toys are for babies, but at six years old Peter loves many toys and books aimed at babies or toddlers. They are designed to stimulate senses and use simple language which is exactly what he needs.

Russell will be one year old by Christmas but isn't rolling yet and doesn't have any sitting balance, so many of the toys aimed at the 12-18 month age group will not be appropriate for him. He also has a visual impairment so we are looking for toys to stimulate his vision and encourage him to start moving.

2) Don't automatically ignore items aimed at older children or adults.

If an item relates to Peter's current interests (space, cars, maps, trains and butterflies), it's a big hit - especially coffee table or encyclopaedia type books.

As Russell hasn't left hospital yet, and in fact has only been outside three times, we're looking for gifts with mirrors or real-world imagery rather than lots of bright colours and cartoon characters.

3) Remember that many children have a "spiky profile" where their skills may be age appropriate in one area but delayed in another, so for example Peter can easily complete a 100 piece puzzle but wouldn't understand the simplest board game aimed at pre-schoolers.

4) Don't worry if you're asked to do something out of your comfort zone or that seems unusual!

Peter doesn't like wrapping paper as it makes him anxious, so we ask for unwrapped gifts for him (or unwrap them ourselves before he sees them). We've also heard of families wrapping gifts in transparent cellophane or sticking a photo of the gift on the outside so there are no surprises.

As Russell has a tracheostomy we need to insist on no glitter, sand, or soft toys with fine fibres that may go into his lungs.

5) Have fun choosing! These are all gifts that Peter and Russell would love to receive this Christmas:

Ravensburger 100 piece Snowman puzzle, Discovery 50mm astronomical telescope, B Symphony, Pintoy Tower Slope, Tidlo Double Sided Easel with Paper, Debenhams Space Rail, Funtime Newton's Cradle Executive Desktop Toy, Paladone Scrabble Light, Science Museum Magnetic Sand Timer, Disney Cars Book

Baby Einstein Playtime Explorer Gift Set, Bright Starts Roll and Glow Monkey, Tomy choo choo loop, Bright Starts Light and Giggle Drum, Baby Einstein Neptune Magical Lights Mirror, Debenhams Party Bulb

This post was written as an entry to the Debenhams "Dear Santa..." competition. Five lucky bloggers will each win £100 vouchers to spend on toys from their range.

A family update

Peter has had a great Summer and has just gone back to school into year 2. He has put up with a lot of change as one of us has been at the hospital with Russell most of the time, and has thrived with all the challenges that have come his way. He's getting stronger and fitter all the time - he now regularly runs 1km at our local running club, his confidence has increased: this Summer he's tried rock climbing for the first time and has climbed right to the top of the biggest climbing frame at any of our local playgrounds. He's taught himself to read, he's constantly experimenting and enquiring, his speech has improved, he loves imaginative play and he's developing a real sense of humour. He has a keen interest in butterflies so we've been providing him with resources, he can now identify 6 or 7 different species and will spend half an hour at a time sitting in the garden watching all the butterflies visit our buddleja. He's such a little character!

Russell has also started thriving since he became part of our family. When we first met him he was seven months old but like a newborn in terms of his development, except for his utter disinterest in whether anyone was with him or not. He's now 9 months old and about 3-4 months developmentally, but his whole demeanour is different - he's interested in us, wants our attention and is starting to demand it which is great. We've completed our training in his care and do everything for him whilst we're at the hospital. We're hoping to be able to take him on outings soon (accompanied by his ventilator and all his equipment!) and work up to day leave, overnight leave, and then hopefully he can be discharged home by November. We have a lot to prepare at home before he comes, and it will completely change our lives (again!), but we're looking forward to it. He's definitely worth it.

We were really pleased to receive an email from Belle's adoptive family recently, telling us how well she's doing, with some photos from their busy Summer. It's so lovely to see how happy they are and hear about their new life as a family of four, it sounds like Belle is keeping them on their toes and is making loads of progress!

We have more change on the way as we've decided to move house to give Russell a downstairs bedroom, Peter more space to play, and our dogs Lady and Nana a bigger garden to run around in! We're in the process of packing boxes, and since we're moving over county lines we're visiting new schools for Peter too. Our local authority accepts foster carers from neighbouring counties so we don't need to change fostering agencies thankfully.

It's a busy time but we're sure everything will settle down by Christmas... perhaps it will then be time for us to go back on the lists for a third placement!