Hi, My name is Miriam. I have 6 children, 5 earth children and one in heaven. I also have one grandson. I have been going solo for quite sometime. One of my children, Jack who is 14 now, has Down Syndrome.
Im just going to write about having a
family member with Down Syndrome from one Mums perspective. The experience with be different for everyone as just like any family all members are individuals with different experiences, likes and dislikes. I am not going to get into facts and figures on health and development......Ive thrown away most of those books. Jack HAS Down Syndrome, he is not a Down Syndrome child. I hate that with all my heart. He is an individual, a child, my son, his name is Jack he goes to school, plays footy, fights with his brothers and sisters, hates brussel sprouts and stays up to late. Thats what he is an individual not a Down Syndrome!
My story starts in 1991 when I moved to Wagga Wagga, NSW, Australia, to start at Uni. I was single with two children after my first marriage had broken down 2 years before. About 6 months after starting uni and moving to Wagga I meet my 2nd husband to be. Eventually we moved in together and in 1993 I found out I was pregnant. I was 29 years old. This was to be my 3rd child but my fiance at the times 1st child.
The pregnancy was very normal, no issues, baby grew and thived. I was enrolled into the midwifery program where the pregnancy was monitored by a midwife and after delivery I was to return home within 24hours with daily midwife visits for the first week. This was offered to healthy mums with no complications. There was no reason for any concern.
I was still doing my degree I had started in 1991 and was a little annoyed that my baby was due on the 22nd May 1994 and my mid-term exams were on at the end of June!!!! That was actually my biggest concern. My Mum offered to babysit over exam period so it would be ok as the exams were 3 hrs so I could get out and done between feeds! I had everything planned perfectly, or so I thought!
Well I went into labour on the evening of 23rd May 1994, pretty well on time, nice full-term pregnancy! I had my fiances parents staying with us so I had no worries about my older children who were 7 and 5 at the time. I started labour at about 9.30pm and was very relaxed. At about 11pm my contractions were about 5mins apart and eventually at about 11.10pm we headed off to hospital which was only about 5mins away. Any we got to hospital just after 11.15pm and within 15mins Jack arrived, delivered by one of the midwives. My fiance was very excited, he had a son and proceeded to count 10 toes and 10 fingers. He had never seen a new born before, but I could tell something was different. The midwife was quiet and mentioned something about calling the on-call doctor. With-in 1/2 an hour after he was born, a doctor was sitting at the end of the bed and got straight to the point..............."I am 99% certain your son has Down Syndrome".
Well you could have knocked me over with a feather! This absolutely beautiful baby in my arms has Down Syndrome, which I really knew nothing about. OK, what now? Well this is how I saw it.......He was still the beautiful baby in my arms, he was still my son, he was my fiances first child and my third child, he was still a brother, grandson, nephew, great grandson etc........he just happened to have Down Syndrome too.
From that moment things would be different but also the same, but most of all I just knew it would be ok!
The differences...........not many except for feeding problems, he was very low tone and sleepy . I had to learn as much as I could about Down Syndrome.
The sames........he was a baby, and so I had planned to be realised from inpatient in hospital to the midwife out patient service, so I did and we were home the next day as planned.
He was ok by me, he was a beautiful new born baby who was loved and treasured. He is a family member.
So my advice for day one if you have a child who has a disability is to remember that there are probably more 'sames' than 'differences' but most of all this baby is an individual and YOUR child, the baby is NOT the label but a person in their own right.
Next.......Part 2 The First 12 months.
(July 4th) (
