Down Syndrome Bloggers Network: High highs, low lows
The Down Syndrome Bloggers Network group monthly prompt for January is “They say when you are a special needs parent the highs are higher… and the lows are lower. I have found this to be…”
They say you shouldn’t compare.
But it’s really hard not to isn’t it?
I would’ve thought that we’d have been used to it after Luke decided to set his own schedule when it came to milestones but I can’t pretend it’s not still difficult.
Whenever it’s just us and I can see Faith’s individual progress, it’s fine. Then I see another baby of a similar age and it’s not as easy.
At just one year old I’m not sure we’re far enough into this journey together for me to be able to answer this month’s prompt with any surety.
Whenever any of your children achieves something it makes your heart swell but the harder someone tries to do something the greater the resulting celebration and I know when Faith reaches a milestone it comes with a whole bucket load of relief too.
For now I remind myself that life is not a race that you want to finish first, that everyone has their own strengths and weaknesses that may change and develop over time, hope that she’ll never need open heart surgery again and let my heart swell threefold everytime she shares a smile or giggle with us.
Read more from the Down Syndrome Bloggers Network on the theme of highs and lows: Trista Park – Highs and lows
The Down Syndrome Bloggers Network group monthly prompt for December is “What is one intangible gift you want to give to your child?”
When my three year old is asked to choose just one thing she really struggles. If she picks up wrist bells from a group’s music box she has to have at least four, one for each wrist and ankle and preferably a few more in her hands as well. One item from the songbag becomes a pile in front of my feet. One toy from the shop usually translates as a minimum of one for each hand.
It turns out she might get it from me. When I first thought about the Down Syndrome Bloggers Network group’s December prompt what one intangible gift I would give to my children a whole list quickly formed in my mind.
It’s quite normal to have lots of hopes and dreams for your children’s future and, whilst you bemoan how quickly the time goes, you also want to fast forward to see the adult they’ll become and the results of the paths they will choose and whether or not they take any notice of any of the signposts you indicate along the way.
I guess when you have a disabled child those aspirations become slightly coloured, assumptions underlying them unsettled.
I know that Faith may require an extra dose of all the strengths you wish for any child.
Determination is key and fortunately Faith is currently displaying no shortage of this. If the road to success is trying hard then, even if she takes a little longer than typical, she’s sure to reach her goal.
But, as we head towards the time of year that celebrates peace, perhaps we should focus on the present rather than projecting ourselves into crystal ball imaginings.
So I will choose patience as the gift I would procure for her if I could. Patience with herself, patience with a society that seems obsessed with pushing forward when we could be enjoying the moment, patience with people who don’t always show the kindness they should to those of differing abilities they lack the understanding of and patience with her mother as she learns to navigate this new world alongside her.
And maybe if I manage to get enough patience for her, a little bit could rub off on me too.
I have recently joined a Down Syndrome Bloggers Network group who have decided to link up together writing to a monthly prompt. In honour of the American members of the network and their national Thanksgiving holiday this week the first theme is “thankful”.
We are very blessed to have Faith in our lives and I am thankful for many things her arrival brought with it including the friendly community that have extended us an immediate warm welcome.
Here LDSSG trustee and secretary Emma Hall explains how the idea for the project was formed.
When I look back it was after that moment when the doctors and nurses gave us the conclusive news at two days old, that Harrison did have Down’s Syndrome. When they left the room we felt completely lost, alone and overwhelmed with questions that in our heads sounded silly but we needed answering.
After four months, by chance and social circles, we met Eileen and Pete who are parents to Niall, also with Down’s Syndrome. The relief we felt after chatting to them and airing our ‘silly questions’ was really encouraging. It was also through them that we then found out about the Lincolnshire Down’s Syndrome Support Group.
Since joining the LDSSG and hearing many other parents share their stories and maternity experiences, it became clear that the delivery of how our parents are first told about their babies’ diagnosis of Down’s Syndrome is very different!
It was then that Harrison’s Hampers came about. Myself and Terry had always wanted to do something to support Lincoln County Hospital after how well they cared for myself and Harrison after his birth and we realised that we could provide the medical staff with a hamper to give to other new parents, celebrating the birth of their baby and which could also signpost them to the LDSSG, when/if they felt ready to meet other families in a similar situation.
The name for the project was easy, our little boy is called Harrison and the teacher in me loves a bit of alliteration so Harrison’s Hampers it was!
We’re aiming to do away with negativity! It is a rollercoaster of emotions, being told your baby has a syndrome and depending on how this news is delivered to you can affect how you deal with it.
My biggest aim at present is to get the Harrison’s Hampers in to the Lincolnshire hospitals with maternity services, Lincoln County and Boston Pilgrim. I want the maternity units to be able to gift them to the new parents as and when the time is right during their stay as this would be more immediate and uplifting at a time when they may need it most.
However this also needs to be done sensitively and respectfully which I would like the medical staff to consider as it may need to be done differently every time!
When planning the contents of the hampers I wanted to make sure there was something for the whole family so there are items for the baby (clothing/toys), for siblings there is Hayley Goleniowska’s book I Love You Natty which is actually written by Hayley’s older daughter and the fun she has with her younger daughter Natty who has Down’s Syndrome. For the parents there are toiletries, the LDSSG leaflet which tells them all about what we do in our local community and how we support our families and a homemade card just to say congratulations which includes a picture of our little Harrison.
The latest addition to the hampers are beautiful, handmade, patchwork baby blankets which were kindly made and donated by volunteer organisation Project Linus UK.
My main aim was to keep all the business that supported the Harrison’s Hampers local, within Lincolnshire. Luckily I have found most local business and crafters really supportive and keen to be involved. I always include their business cards to advertise and support them in return. Some items are generously donated and some are heavily discounted without negotiation!
I am about to make my next 10 Harrison’s Hampers and I am on the lookout for even more ideas for content within lovely Lincolnshire, so do please get in touch if you know of a local business that could donate items or you think would like to be involved.
The hampers that have been given out have been extremely well received by the whole family. It’s great to be able to give something positive and informative at what can be an emotional time.
It’s also important to add that the LDSSG fund the Harrison’s Hampers as part of their fantastic ongoing commitment, right from the start, to all our members and their families across Lincolnshire.
As one of the first recipients of a Harrison’s Hamper we were thankful for the warmth behind all the donated items included and the focus on simply welcoming a new life. But we were especially thankful for the inclusion of Goleniowska’s book and Harrison’s homemade card – an introduction to families for who our new normal has not just been normal for years for them but enjoyable and celebratory.
We were expecting Faith’s AVSD (hole in her heart) operation to be in January. In early to mid October this was brought forward to November and within a few days we were then being called in to Glenfield Hospital in Leicester for the procedure to take place before the end of the month. One postponement later and the operation went ahead as planned the second time.
There are no words strong enough to express how incredibly thankful we are to the team at Glenfield Hospital – the outpatients department, everyone working in Ward 30, surgeons, PICU and everybody who supports them – for taking great care of Faith and fixing the hole in her heart and in the process shoring up her parents’ and siblings’ hearts too.
The second half of this year’s October may have gone in a slightly surreal blur but, thanks to the angels watching over Faith, both here and above, they gave her the strength to recover much quicker than expected and she was even home in time for Halloween and to see her brother, sister and daddy dress up for trick or treating.
Daddy was a zombie again, Luke quickly donned his choice of spider top on returning from school and Willow chose to accessorise her vampiric dress, ghost torch and claw treat bag with a fire fighter’s helmet, knight’s shield and explorer’s binoculars. Obviously.
Here’s hoping your mini monsters are happy and healthy enough to be behaving like little terrors this Halloween.
October 2017 is a very significant month which has lots of claims to fame.
Breast Cancer Awareness Month, Stoptober and Black History Month, it contains The Big Draw, World Space Week, Wool Week, National Knitting Week, British Egg Week, National Curry Week, Chocolate Week, Baby Loss Awareness Week, International Day of the Girl Child and International Babywearing Week, Apple Day, International Sloth Day and Halloween, to name but a few.
And not forgetting, most importantly, Daddy and Mummy Malpi’s birthdays and anniversary.
But, notwithstanding the significant number associated with my impending age celebration date, October 2017 is also important to us as it is Down Syndrome Awareness Month in the US.
In the UK Down’s Syndrome Awareness Week is held in March, encompassing the date of the 21st of the 3rd month as people with Down’s Syndrome (or Trisomy 21) have three copies of chromosome 21 but why wouldn’t we want to join in with our international community and dedicate a whole month to raising awareness, to “celebrate people with Down syndrome and make people aware of their abilities and accomplishments”?
Faith may have only been born just under nine months ago but she’s already achieved so much. She’s been able to breastfeed which we were told was unlikely, she has the most adorable chuckle, she attracts compliments wherever we go and has been signed up by specialist talent agency Zebedee Management, gives great cuddles, blows a fabulous raspberry, has lovely babble-y chats and she’s getting more and more mobile as she’s so determined to start exploring the world just like her big brother and sister.
And she’s certainly won the hearts of mummy, daddy, big brother and big sister.
I don’t want to consider what a world without my Faith would be like and I give thanks that, for the most part, we live in a country where people are kind and think that helping others should be the willing default option. When you give love you receive it in return and, if our as yet short introduction to the Down’s Syndrome community is representative, there’s a lot of love to go round.
October has always been my favourite month with birthdays, Halloween and an anniversary to celebrate and now it has a special relevance for my miniest mini too.
#SundaySevens is a blog series started by Natalie from Threads and Bobbins. Here’s my fourth entry into the series looking at a few of the little things that have happened in the mini ones’ lives this week…
1. Age appropriate behaviour
My eldest daughter is two. We missed the terrible twos with Luke although he more than made up for it when he hit three. Willow, however, started engaging in what our health visitor called “age-appropriate behaviour” before her second birthday and the bigger she gets the bigger her outbursts of “age-appropriate behaviour” get. It’s been an interesting week…
2. Beautiful behaviour
It pays to remember how much toddlers are taking in, developing and growing though and it’s lovely when it comes back out in more constructive ways. Willow’s obviously been noticing me wearing Faith in recent weeks and wanted to try it out herself!
3. And just because
I love this photo! My fairy-dress wearing, butterfly face-painted, ice cream loving daughter is, of course, amazing.
4. “Beyond my body and labels”
A friend read my Loving a designer label blog post about Faith’s Down’s Syndrome diagnosis and sent me this lovely quote from the book she was reading at the time.
I think it’s safe to say Haemin Sunim is far more eloquent than me: “I wish you could see my true nature. Beyond my body and labels, there is a river of tenderness and vulnerability. Beyond stereotypes and assumptions, there is a valley of openness and authenticity. Beyond memory and ego, there is an ocean of awareness and compassion.” The book title is The Things You Can See Only When You Slow Down and it’s definitely going on my to read list.
5. With bated breath
Anyone else waiting for the decision on primary school places for this September? Did the email sent out this week get your heart racing? It was just confirming that we will find out after Easter. It also stated that 94% of applicants have their first choice. Which means they have already placed everyone so just tell us already! (Really don’t want to be in the 6%…)
6. Holidays court ruling
Speaking of schools, this week’s Supreme Court ruling against the father who took his daughter on a term-time holiday has saddened me due to its wider implications. We are very privileged to have a universal system of public education in the UK and we mustn’t forget that but family should very much come first.
7. They build you up… they knock you down…
Husband: “Hello sexy.”
Son, quite emphatically: “No! Not sexy! Mummy!” Husband now has a new game…
#SundaySevens is a blog series started by Natalie from Threads and Bobbins. Here’s my second entry into the series looking at a few of the little things that have happened in the mini ones’ lives this week…
Making a Splash
We found these wellie boots for Willow secondhand when she was attracted to the monkeys on the side and have only just noticed the rather fabulous puddleometer on the backs.
2. Christmas is coming
I’ve had several conversations with Luke about Christmas recently. Because, you know, it’s March, you’ve got to be prepared. His main concern, prompted by finding this mini stocking, seems to be that Faith needs a stocking too which is really sweet so I’ll let him off. But I’ll also make sure we do a better job of clearing every single last piece of Christmas paraphernalia away properly this year.
3. New reading material
We finally had time to spend our World Book Day tokens this week, popping into Lindum Books in the Bailgate in Lincoln quickly whilst on our way to a playdate. Luke chose Peppa Loves World Book Day, Willow’s choice was Everyone Loves Underpants and we decided to get the Where’s Wally title too for daddy to share with Faith.
We were also given a copy of Sarah & Duck Stay at the Duck Hotel by one of Willow’s godmums. After reading this several times in quick succession, Luke was so determined to visit the Duck Hotel himself he and Willow started packing their Trunkis in preparation. Who wouldn’t want to stay in a hotel where there’s a slide directly connection your room to the swimming pool?
I took part in a Twitter # hour hosted by Brit Mums and Visit England this week focusing on the literary holidays the country has to offer to staycationers. #BookEngland was a delightful conversation with fellow reading enthusiasts and reminded me of places I’d already been pre-minis that I’d like to go back to with them, as well as suggesting new places to go. Seven Stories in Newcastle, The World of Beatrix Potter, Swallows and Amazons locations were just a few. Through the tweets I also discovered that Lincolnshire’s Belton House is hosting a Moondial exhibition this year in celebration of the 30th anniversary of the publication of Helen Cresswell’s novel. And now, through a friend’s Facebook page, I’ve also discovered there’s The Story Museum in Oxford which looks fab and is another one to add to the list!
5. Viral interview
I don’t believe anyone can have failed to see the BBC interview where South Korea expert Professor Robert Kelly was upstaged by his family antics. If you’ve been living under the proverbial rock this week then Google it – it’s hilarious and endearing. But also make sure to check out some of their follow up interviews as they highlight what such a lovely family they seem to be in slightly less panicked circumstances. Isn’t it nice that the chaos of ordinary family life has stolen the headlines at least for a few days? And I’m sure a few of us know a lot more about the situation in Korea than we otherwise would have…
6. Road signs
Luke’s nursery asked us to take photos of road signs when we’re out and about as his group expressed an interest in what they mean whilst they were taking part in another activity. This was two or three weeks ago. We’re still taking photos of road signs now. It’s nice that he’s taking his homework seriously but our March 2017 family photo albums are going to look a little weird…