I don't remember much (from memory) of the first few years of life after Heni being born... it was one great long blur... a period of time in which I felt like I was in a black hole...constantly tired (hey what's changed?) and in a state that I can only call mourning.
I wondered every single day how long my precious little bundle was going to be around, but also at the same time trying to make the most out of whatever time that we had.
It's a weird "paradox" (that I still haven't quite managed to come to terms with fully)...
It's a mixture of mourning for the child you didn't have, mourning for the child who is still with you (but who may not be with you). This is mixed with the loss of a life that "could have been" but all the time trying to live here and now as normally as possible, trying to deal with the hand life has dealt you. At the same time, being ever mindful and grateful that I am a lucky one who still has the gift of a beautiful child who I can hold, love and enjoy. (Go figure that one out!)
All I can say is that it's a good job that I kept a photograph album and a journal to help me remember some of the things that she got up to during that very hard place and time.
Feeding ...again... (see Heni's story part 1) was an ongoing challenge, in which it was a battle of wills to get food in to her and for her to get the nourishment that she needed. One of the first developmental stages that indicated to us that she had a mind and (strong) will of her own, was how she would turn her head away from her spoon and and make sounds to indicate she didn't want to eat! A good proportion of our time went on doing this one task alone. We would try all sorts of techniques to get her to eat and subsequently would get told off by the speech and language therapist for having her in all sorts of "non recommended" positions...but guess what... it eventually paid off and it worked...so sometimes you just have to go with the flow and make it up as you go, ignoring the "expert advice" because they don't always know your baby like you do!
As I write this I've been looking back through some of the albums of "way back when" and I came across this picture of Heni and Saskia (oldest T18 "Personality" in the UK). They were just wee dots... so super cute and this is such a special picture of our magnificent girls. Saskia looks like she is the big sister, looking out for her new accomplice...partners in crime!
(They still are to this very day as they both go to the same college together... I would love to be a fly on that wall!)
It reminded me of how lucky I was (still am) to have Heidi (Saskias mum) living so close to us. Any questions I had, I could just pick up the phone and she would be there to listen and completely understand.
The Albums are brimming with pictures and as I look back on some of the photos they bring a smile to my face and a tear to my eye as there are so many mixed emotions attached to them.
Looking at some of the pictures it's apparent that Heni had good head control and was able to sit for brief periods of time. At this age she could also weight bear through her legs (if you supported her) and when lying down she could roll over and back again.
Heni had a very bad habit of banging her head every time she was put down on the floor or in bed, this meant you couldn't leave her to play by herself for very long. This was rather exhausting with her needing constant attention. It was always the second you would look away that she would do it... (again... a mind of her own)... it was uncanny that she knew exactly when you were and were not looking! Unfortunately this habit would leave big red marks on her forehead and her nose was constantly scabby from her busting it up all the time. She also had a nasty habit (again inflicting pain on herself) of wedging her leg between the mattress and the bed. Very often she would have bruises from this too. She even resorted to bending her little fingers back constantly AND she would pull her hair. We had to keep a constant vigil over her, to stop her from self harming.
Looking back her self stimulation was probably her way of either ridding herself of reflux pain (we call this the counter irritant approach in physiotherapy... where one sensation/pain overrides another) or, she was bored or unhappy. I remember it being a very physically and emotionally demanding and draining exercise for us .... watching her do these things and constantly trying to stop her.
Heni loved to play though... she always had something in her mouth like a dolls foot or hand and loved slobbering over everything. She still likes to chew her toys to death now. At school she did lots of lovely activities and gradually learned how to explore different textures like paint/ corn flour/ water/ pasta... you name it she did it... the one thing she still hates to this day though is grass. She dislikes it immensely. It makes me wonder how many more Edwards kids are the same? Maybe that extra 18 chromosome holds the "minxy/ naughty" gene and the "I hate grass" gene?"
She attended regular reviews at the audiology clinic which showed middle ear effusion and had hearing aids prescribed when she was about 3 .... she promptly learned how to manipulate them out of her ears or she would make them whistle so that we would end up taking them out for her!
She also had constant gunky eyes for which she eventually had an operation to lance her tear ducts at Harefield Hospital. This was done under the direction of the heart surgeon because of her VSD. The twenty minute procedure turned in to a two hour nightmare and the consultant anesthetist said that he had used every skill he possessed to keep her with us and advised us to never put her under anesthesia again.
Like most children with Edwards Syndrome she had a sensitivity to light and had to wear sun glasses outside or she would sneeze and end up being sick. Even though we would tie the glasses on to her with a strap she had an uncanny method of pulling them off. Over the years I have learn that there are some things that you "fight" her to do and others you just let her get on with. Glasses are one of the latter. She obviously didn't like or find any benefit in them over time... so she no longer wears them. We have noticed that she has outgrown her extreme light sensitivity and only sneezes occasionally...and then she gets a slightly warped sense of enjoyment from it!
At school she used to stand in her prone stander for short periods of time and also learned how to walk in a walker. She managed to get to a developmental stage where she could sit in "w" sitting position and move herself in to an all fours position and be in a crawling stance . It was very special to see her do this, and we were hoping that she would go on even further and crawl. Her scoliosis, however, was becoming more apparent as she got bigger and meant that she had to attend regular appointments at the spinal clinic at Stanmore Orthopedic Hospital. Here they cast her for a spinal brace to stop it from getting worse. Wearing the brace every day restricted her chest movements and led to a number of serious chest infections. She ended up (on and off) with a considerable amount of time off school... and when she got sick, her development and progression slowed and even regressed.
One of the main challenges was to deal with Heni while being pregnant (with my third and fourth babies). Although Heni was relatively light and easy to lift it was still a strain. Afterwards, the logistics of looking after and getting out and about with the other children were hurdles to jump. We started out with two buggies (when each of the subsequent babes arrived) which usually meant I had to have another person with me. I do have memories of going round the supermarket with both buggies AND the shopping trolley though on a number of occasions... just me and the kids. I have no idea how I managed it, and it makes me laugh to think of how peculiar it must have looked to other shoppers! However, big brother in the middle was a huge help and my reliance on "heavenly" strength and support was enormous!
We progressed on to the double buggy..that is until "daughter number 2" (child number 3) could walk well enough ... then "the hungry boy" (child number 4) took her place in the chair. In some respects it was like having two sets of twins to deal with as Heni has always been at the stage of being like a baby.
here is an extract from one of my journal entries back then when I had just the three of them:
It is impossible to do everything and give each child what they need and try to stay sane at the same time. I find that when I’m meeting Heni's needs, (daughter number 2) is running riot destroying the house and getting things out the cupboards that are dangerous. (Big brother) is teasing (daughter number 2) or destroying the house and completely ignoring me unless I shout at him and then it still seems to make no difference. If I’m meeting (daughter number 2's) needs, Heni is moaning and bashing herself in the face with her hand getting all upset, or even trying to go to sleep when she shouldn’t.
When I read back through some of the entries It makes me wonder why we had another one! I am forever grateful that we did though as I can't imagine life without my "hungry boy"....
By the time Heni was about 7 she was very up and down in her health and was constantly tired, lethargic and not doing well ...having numerous infections and chesty "episodes". Her school day had gradually become shorter and she was able to tolerate less and less time there. She had also become very "moany" and feeding was an issue again. She didn't eat very well and therefore didn't get the nutrition she needed. As a result, in consultation with her cardiologist, we decided to put her on oxygen to see if it made her feel any better. We started out back then at 1 l/min. On this level she seemed to perk up, her feeding improved and she became more energetic at school. Her average daytime SAT readings varied between 70 – 84 % and Her nighttime reading was around 75% fairly consistently.
The decline up to this point had been gradual but the oxygen left us with a further question ... how much more would she deteriorate and how quick would it be?
If you would like to read Heni's story part 1 click here
If you would like to read Heni's story part 2 click here
Join me for Heni's story part 4 soon.