So Seren is a big sister! We welcomed baby Violet a whole 16 days overdue. A slightly traumatic entry into the world, Violet came out covered from head to foot in poo (her own) and screaming for food. She weighed in at 8lbs2.5oz, although I think it would have been more if they could have weighed her before she had pooped. She was definitely longer and bigger than Seren who weighed in at 8lbs5oz at birth.
Seren marked the occasion by trying her best to steal the limelight from the attention that Violet was getting and she did it by WALKING!! Yes, Seren is now a toddler!! I can’t believe it – I am practically delirious with pride… 22 months old and walking. Even in my wildest dreams I didn’t dare hope that she would walk before she was 2. She has mastered her toddle really well but is still unsure about walking on pavements and will just sit down. We are getting there though and every day sees an improvement. It has really opened her up to a whole new world and her own pride in her achievement is clearly visible.
Back to our new addition…. Ava has taken to her newest baby sister really well – she adores Violet and can’t stop cuddling and kissing her. Its very sweet. There isn’t a scrap of jealousy there, and just like when Seren was born, Ava has taken it in her stride and welcomed her new sibling with open arms.
Seren on the other hand… that’s another story… on the whole she is being tremendously gentle – much more so than we expected. She strokes Violet gently, has given her kisses and even a couple of hugs. Yes, one or two of the hugs have been bone crunchingly enthusiastic and some of the strokes have been rather erm, smack-like, but she isn’t even 2 yet so I think its probably age appropriate behaviour! She was devastated when I first got home from the hospital with Violet and wouldn’t stop crying. Every time I picked Violet up or fed her, the tears would start. She knew immediately that she wasn’t the baby of the family any more and she felt so pushed out. For the first week she wouldn’t let anyone near her except me. It was so bad that she wouldn’t even let Matt feed her… I had to do everything for her. It has passed now though and I wonder if she remembers the time before Violet was here.
Violet herself is a gorgeous little bundle of joy. She is a cuddly baby and loves being held – so different from Ava & Seren who weren’t cuddly babies at all. She is very vocal when she is hungry and lets us know she has arrived in the family. She has suffered from reflux but the gaviscon she is taking is really helping with the crying. She is 4 weeks old already and I definitely feel like she is settling in to the family and we are finding our feet as a family of 5.
After Violet was born, I noticed a dimple on her spine – about an inch above the top of her bum crack. I mentioned it to the paediatricians and they made a referral for a scan. I knew what I thought it might be, but I refused to google it, rather I decided to wait and enjoy every minute of the first weeks of my baby without thinking too much about it.
The scan was 2 days ago and it was immediately confirmed to be what I thought it might be. Spina bifida. As soon as the diagnosis was made by scan, I had to go to the SCBU where another doctor wanted to see her immediately. The next 5 hours was spent with me seeing a steady stream of doctors, consultants and surgeons. I was told they might have to operate straight away and waiting for that decision to be made was pretty grim. Finally they decided that from the initial scan and an inspection of Violet, that she was fit and well enough with her dimple to go home. She has to take daily antibiotics to keep her healthy and infection free until they can next see her. Apparently there is a risk that she could be prone to bladder infections if her bladder is affected by the spina bifida. She has to see more surgeons, have more scans and then we can see what we are dealing with. Until then, we have no idea of how serious it is or whether she will need surgery.
I did laugh when the diagnosis came… when I told the staff that I had a child with Down’s syndrome, they regarded me with caution – I think I must have looked like a mad woman teetering on the edge of insanity, but the reality is that since having Seren I think I have accepted “life”. I feel like my life has already been mapped out for me and whatever comes my way I am capable of dealing with. I have a shoulder shrug thing going on now; hey ho, such is my life. Take it on the chin and carry on. I have everything I could possibly want and need: I have my husband, my 3 gorgeous girls, my family and more and more importantly these days, my friends – the “real” ones and the ones I have got to know on my online communities. Between them, they keep me going – their support is essential.
Unlike with Seren’s diagnosis though, I did feel myself feeling anxious for Violet when I was at the hospital. I guess it’s the fear of surgery. I think I will definitely crack up if I have to see my baby being put to sleep to have an operation on her spine. No mother wants to see their baby suffer or have surgery. I have always hugely admired the families who have to deal with their kids having to go under the knife… it must be so emotionally draining. But as I always manage to do, I am going to put up my solid mental block and take each day as it comes. I am not going to spend even one second of any day worrying about unknowns and what-if’s. I intend to enjoy every day with my 3 little girls and worrying about the future would put a cloud over our present… and actually, we have a very wonderful present, very lovely lives, filled with love and laughter and that is how I want it to stay!
Oh, guess what else?
Ava didn’t get into any of our local schools – all 3 choices rejected. She was offered a school 10 miles away and we were told she would be getting a taxi, on her own, to and from the school every day. I mean, what parent would allow their 4 year old daughter to travel like that for half an hour each way on their own??? We were devastated when we found out. To add insult to injury, we found out on the day Violet was born. Someone, somewhere hates us I guess. I suppose I don’t have to point out to all the parents of children with Down’s syndrome how tied we are to appointments, development groups, routines etc, this arrangement would mean we couldn’t continue with Seren’s care in a way we want to. I would have to cancel a lot of the things I do with Seren for her development to ensure we are home for Ava’s taxi. I couldn’t do the trip myself and get Seren to preschool – a place which has been carefully planned for Seren. Hospital appointment etc would suffer, Seren would suffer and guess who else would suffer?? My little Ava. My 4 year old little girl who is so looking forward to going to “big school” with her friends. It’s so cruel to remove a little girl from her community like this.
Even more cruel (in my opinion) that I stated on the form about Seren’s special needs, and Oxfordshire County Council didn’t take a blind bit of notice. We are 900 yards from our nearest local school but we are still considered “out of catchment” even though we are closer than many in catchment. So we are having to appeal for her place at our nearest school. We need this like we need a hole in the head. In the mean time she has been offered another school which is 4 miles away, but with Seren starting a local preschool in September, I have no way of being able to make the round trip in time for both of them to get to school on time and the problems with the rigid taxi pick up and drop off times leave us worrying about Seren’s appointments again, let alone the appointments now for Violet. Sometimes I wish someone somewhere would give us a break. I don’t want special treatment, I don’t ask for miracles or anything fancy… but I really want Ava to be happy and get the most out of her social life and friends and actually, that means staying closer to home and going to the nearest school. Not too much to ask eh?
So my dad’s advice for me is “buy a lottery ticket and don’t go out in thunderstorms”… I guess its true – we are due some good luck but in the mean time, we need to remain mindful that if there is a thunderstorm, it will be me that gets hit by lightning. Charming. But probably true!! The thing is, I think the only “unlucky” one in this equation is Violet… I just hope she doesn’t suffer any pain or have to go through any operations. As for me? When it comes to my girls, as long as they are here and its not life-threatening, there is nothing I can’t handle. Who knows what the future holds, but as ever there is only one thing I can say… BRING IT ON!