When I was pregnant with Nicholas, I was grateful to be introduced, by a mutual friend, to a local mum who had a daughter with Down syndrome. She was my very first ‘real life’ fellow-DS-Mum-friend, but we promised each other that we didn’t have to be besties just because our kids had the same diagnosis. Three years on, now six children between us and very little time for catching up in person, I count my lucky stars to have Jocelyn in my life. She is a fountain of knowledge, a fellow Thermomix lover, shares her best GF/DF recipes with me, and she is the deliverer of lovely care packages. Not only am I blessed to count her as a friend, but I am so grateful that she willingly agreed to share a piece of her heart here on the blog. Thank you, my friend. ~ Annie x
When my husband and I first started to talk children, long before marriage, he wanted five. I wasn’t sure how many I wanted, but knew it wasn’t as many as that. I am the youngest of two, he is the eldest of five. In those early days when I had no idea of what raising a child entailed, I talked myself up from two to possibly four, probably three.
Our first baby, Miss E was born on Friday 9th January 2009. She was perfect, is perfect. She has hazel eyes, auburn hair that actually stops people in the street and a giggle that makes my heart skip a beat. The least interesting thing about Miss E is that she has Down syndrome.
We first began discussing having more children the day after she was born, the day she was diagnosed. After much discussion we were firm in our decision that family, above all else, was the best thing for us and for Miss E and her development. We did the right things, the text book things. We met with a geneticist who discussed our likelihood of having another child with Down syndrome, we talked about diagnostic testing, we assured each other that we would be okay no matter what and forged ahead.
The night I found out I was pregnant with Master N, I sat beside Miss E’s cot and I cried for a long time. I was frightened, terrified of how I would manage two children, let alone a baby, combined with Miss E’s additional needs. I cried because I knew that the therapy regime I was aiming for and already falling short of was never going to be reached once another baby came along. I cried for the mother guilt that I already had which I knew was only going to grow. I cried for the anxiety I had about the child I was carrying and my inability to know that it would be okay in the end.
When you enter into the world of special needs, you meet a lot of people, some coping with very challenging circumstances. I wasn’t sure I was up for a double barrelled challenge. We’d dodged so many bullets with Miss E’s health, were we tempting fate?
I was adamant that I was having prenatal diagnosis testing. I did the research and I told my obstetrician I wanted a CVS as soon as I could have one, as I needed to reduce my stress load. She said she would never recommend a CVS until the second trimester and told me to wait for an amniocentesis. I booked in an amnio as early as possible. Mark and I fronted up, hand in hand; I cried in the waiting room. It was the same waiting room I had sat in for my scans with Miss E, where we had been told that we had a high-side-of low chance of having a child with Down syndrome, where they had recommended an amnio, which we never had. I relived it in my head and I held my breath.
They did the scan, and there he was, our baby, my baby. They ran their numbers combined with the blood test results and told us we had a 1 in 2000+ chance that this baby had Down syndrome. I didn’t know what to say. It was completely unexpected, I was in shock. We didn’t have an amnio, we went home to grow our baby. I didn’t think there was any number they could say that would make me feel comfortable, but it turned out there was.
There are many articles, blog posts and books about what a child with a disability or additional needs brings to you as a family, a mother, a human. And I could fill pages about the positive impacts Miss E has had on me, and us, in her short life and on the hopes I have for what she will bring to our other two as they grow together. But here I want to celebrate what having a child without a disability brought to my life.
His birth brought me great healing; it made me feel ‘repaired’ in some inexplicable way. It brought me perspective, it brought me sanity and it brought me reality. It highlighted her sameness, not her ‘differentness’. It showed me that a lot of what I had been experiencing after Miss E’s birth wasn’t because I had had a baby born with a diagnosis, but because I had had a baby. He arrived without the confusion, the guidebooks, the specialists, the googling. I was ordering books on Down syndrome from my hospital bed with Miss E, but with Master N I was reading WHO magazines and watching E! News. And it wasn’t because it was easier – Miss E slept through from 8 weeks old, Master N still needs midnight cuddles at least three times a week. It confirmed to me that every child is an individual – born, not made, and every child has special needs. He also brought Miss E a break. After his birth I took four months off from all therapy and, boy, did she blossom. She had to fend for herself occasionally, the world moved its orbit from around just her, she learnt to play by herself, her language took off, we stayed home more, mummy relaxed a bit, and we were all winners there.
The choice to go from two to three was a tough one. I fought against all the well-meaning advice that “She must have more than one sibling”. I fought it because I don’t believe that she is a burden to be shared but a sister to be loved and adored, to be fought with and yelled at. However this advice played a part, I wanted Master N to have a sibling without additional needs as well, if we were able, but had grave doubts about my ability to keep all the balls in the air.
We were both afraid this time, but not of what it would mean, fears of diagnosis, or disability. I barely thought about that at all during my pregnancy with Baby B. We were afraid of being outnumbered, of being two hands short, of the work load, of the stress levels, of the lack of sleep. I had already seen all my fears of what a second child would take away from Miss E realised, and seen in turn that she had flourished anyway. I had seen inclusion in practise inside the walls of my home and its benefits on all of us. So once again we braced ourselves and forged ahead. Upon reflection I think I probably would have stopped at two if Miss E did not have Down syndrome and I will always be grateful to her for pushing us to three. Our Baby B is so worth it.
The therapy wheel has definitely taken a beating and the mother guilt is piling up nicely beside my bed. As life with three small children barrels us along there is never enough time. As I lose it again and again about speech homework not done, PT practice forgotten, the research I need to do on supplementation or the lack of one on one time for the other two, my husband brings me back to earth. “We chose family, Joce, family above all else”, and it was a great choice. The best choice for us, for Miss E and our family.
Jocelyn is married to Mark and they have three fabulous little people, Miss E (5.5 yrs), Master N (3.5 years) and Baby B (10 months) and they all live happily together in Brisbane, Australia. She is a full time stay at home mum with an Engineering degree in a box under her bed. She loves to read, to bake, to plan, to write lists, to learn and to sleep.
I have been through a very similar situation. When our eldest was born with Down Syndrome in 1998, the scan was just in research stage. We went through the grief, the guilt, the love, the therapies. We decided we’d have another child within 3 years. We got an amniocentesis with our second child, and had a baby girl who Master K just fell in love with and treated like a doll and as she developed, Master K’s determination grew too. He tried harder to do things when she started doing them. Sibling rivalry at it’s best. Lol. He has grown up to be a fine young man. She has grown into a mature, compassionate young lady. The tears and guilt and fear, it was all worth it in the end.
Very similar situation here as well
As I’m typing this my almost 8 yr is crawling into bed with me
My first precious boy we weren’t sure if he’d have DS until after he was born
My middle child is 5 and honestly the concern for DS with him wasn’t there. I think I figured “we got that” lol
I was worried about something else…autism or really anything else
He’s perfectly fine but a much bigger handful than his brother…lol
His sweet loving older brother who is just now kissing my belly where their little sister will be for only 21 more days!
We don’t do any genetic testing but her ultrasound looks great! I’m not worried about DS or even AU this time worried about nursing & cloth diapering …lol
We chose family too and it’s made all the difference!
Thanks Janet and Jaci, lovely to hear your stories. Sibling rivalry is certainly a motivator this end for all parties.
Best wishes as you approach the birth of #3 Jaci, it is so exciting to finally meet them, a beautiful family time .
I do not have children but these blogs are so enjoyable. I love children and am thrilled at learning about all diagnoses they have. Thank you for allowing me to continue my learning curve!!!