This first part was written a week after Eden was born, excuse the DRAMA
So my babies one week old, what a week! Last time I went through this I was amazed they let me out of hospital with a child. I kept telling myself ‘16 year olds can do it Ruth, so can you’.
This time I felt completely prepared
What more do you need right? After 8 months of vomiting, carpel tunnel, tachycardia and sleepless nights I knew life on the other side was easier. I kept wishing I’d go early. My prayers came true I went into labour early, no biggy, I was prepared!
Today my baby is one week old, I feel like I’m trapped in ground hog day, nothing changes, it’s a world I can’t relate too, medical terms and life sentences surround me. This time last week I thought I’d be home recovering from my c section, digesting the hormone surge of baby blues but most of all enjoying the elation that having a new born gives.
Shortly after my C section, the midwife comes to me and says there are similar features between my baby girl and that of a baby with Down syndrome. If I could of got out of bed I would have punched him (yes him)! The next day our baby girl was taken to the nursery to be assessed by the paediatrician, I was expecting the all clear and feeling a little robbed of having my babies first day taken from me, how dare he, who does he think he is.
The Dr’s assessment concurred with that of the midwife… Time stood still for a moment, it was like I was watching a soap opera but with me in it, the drama in my mind and heart was undeniable. Was it real, they have to have it wrong, this is not the picture I’d drawn.
The blood tests came back and it was all confirmed…
Well here we are 18 months on and this is being re written, with all the facts and rawness but with a little less drama.
It’s true I went early YAY! It’s just a shame the hospital I was delivering at didn’t get Eden’s memo in advance, I was 36 hrs into labour but as she wasn’t ‘engaged’ they didn’t want to rush things… 36 hours of labour for what was to be a scheduled Caesarean was not part of my birth plan, after realising that she wasn’t waiting for their blessed engagement I was rushed to theatre within minutes. We had our designated midwife, David (later it would become evident that I hated David).
Standard C section followed; needles in the back, lots of tugging, crying baby. The Paediatrics Registrar, Liz (how I remember all these names eludes me) confirmed that we had a beautiful, healthy, baby girl. We had her name picked for over 4 years from before our son was born; we quickly let everyone know she was called Eden (Gods Delight).
During recovery Eden wasn’t interested in feeding, and could you blame her! After 36hrs of trying to get out and being ignored this girl was exhausted, sleepy and just not interested. I was quickly moved to my room and we were having lots of cuddles and getting to know our little girl, when David (said midwife) comes in and just in passing says, ‘I think there’s some similar features between your girl and that of a baby with Down syndrome’, I was confused and didn’t really think I heard him correctly so I asked him to repeat himself, he had also scheduled an assessment by the Paediatrician the next morning. He then left, I asked my husband if he heard what he said and I then repeated the statement. The other nurse that was still present said not to listen to him, that it was too early to make such assumptions and that she didn’t see what he was talking about. It was at this point I pictured myself running down the hall, crash tackling David and repeatedly poking him in the eyes with my pointer and index finger, lucky for him I was not yet able to move my legs, how dare he rob me of this joy! In time it would prove that David was very good at his job, he picked what nobody else did, very early on.
After a fairly rough night of Eden not feeding we were taken up to the Special Care Nursery where she would be assessed at some point during the morning. We were sitting there thinking that this was all just a huge mistake and that I would have good reason to write a nasty letter to the hospital in the weeks to come.
My husband had to go downstairs to get some breakfast; of course this would be the time that the Paediatrician and his entourage would arrive. Without introducing himself, congratulating me on the birth of our daughter or mentioning any other common decencies he started examining Eden and going through the list of Down syndrome features, dictating to his registrar his observations. I could tell long before he spoke to me what the outcome was going to be. He did not wait for my husband to return (a nurse had gone to get him when the assessment started). He then looks at me, directs for me to follow him into a side room, he didn’t wait for me to sit, nor sit himself, he stood in the door way and told me my girl was born with Down syndrome. He then blurted some stats about Ds, told me that she would live a very happy life and be able to work in a sheltered workshop when she was older… WTF!
How dare he sum up my daughters development and adult occupation at birth let alone at diagnosis, you cannot sum up someone’s achievements’ in life before they have the opportunity to achieve. A mothers defence kicks in very quickly after birth, Eden was not a day old and this would prove the first time I had to advocate on her behalf. Of course I’m hearing all of this through a flurry of tears, weeping and probable sobbing. I felt numb, I felt like someone was playing a cruel joke, I undeniably loved this girl more than life itself but I was in disbelief to what was going on.
I can’t remember what point my husband returned, he can’t have been gone for more than 5 minutes, but 5 minutes that felt like an eternity, 5 minutes that reshaped my entire life. He returned to a basket-case of a wife, completely beside herself with emotion, a complete stranger to the composed, non-emotive wife who he knew and loved. He arrived somewhere during ‘Dr Deaths speech of doom’. Col (husband) looked at me after and said “there’s nothing wrong, she’s perfect by design”. I wish I had his level of faith, understanding and love, but I’m not him and I had to come to terms with things my way.
I was in shock completely and utterly, to follow were some of the darkest days of my life, I cried constantly, I would wake up in the night crying in my sleep, I would call my husband at home at 2 in the morning and just cry over the phone to him. There were some very dark thoughts that have never and will never see the light of day. People would visit and I’d be strong, be that non-emotive person, they’d leave and I’d fall to pieces.
I remember sitting on the side of my bed that first day looking at Eden, loving her but behaving in my head like a spoilt child who’d been given a broken toy for Christmas. I looked up and in walks my son, (this is the first time he meets her) before even looking or talking to me he walks straight over to her and starts singing at the top of his lungs that Frankie Valli classic, ‘I Love you Baby’
I love you baby
And if it’s quite all right
I need you baby
To warm my lonely night
I love you baby
Trust in me when I say
Oh, pretty baby
Don’t bring me down I pray
Oh, pretty baby
Now that I found you, stay and let me love you
Baby let me love you…
Here I was being schooled a lesson of unconditional love by a 4 year old!
At some point Eden was given a Nasal Gastric Tube to be fed through, as she still wasn’t feeding, I couldn’t tell you when, there are a whole lot of facts which remain a complete blur. I would come to loath this thing but at the same time become very skilled at replacing it. It was as necessary as the air we breathe, without it she would not have lived.
Dr Death was only on duty 2 days after Eden’s birth, we had another nasty exchange with him day 2 and then he was gone! Day 3 Dr Nice was on duty, he introduced himself, told us “I know it’s hard but don’t stress too much at this point, let’s wait for bloods for confirmation on this diagnosis, Dr’s have been wrong before, but I don’t think we are”. His demeanour was completely different; he was compassionate, friendly even apologetic. Unfortunately he also diagnosed her heart murmur (later we would learn she had 2 holes in her heart, a VSD an ASD and a faulty valve, yep she had the lot). Dr Nice is still our Paediatrician to this day, every visit he reminds me what great things Eden will be able to achieve in her life, his words are always ‘don’t underestimate this girl’.
Day 5 the blood results confirm what we not only know by Dr’s diagnosis but what we already know by looking in Eden’s eyes, eyes I was scared to photo in those first days as they were her tell tail sign of what I wasn’t ready to accept. Amazing eyes I now love beyond compare because she’s taught me that difference is beauty!
Like I said there were lots of tears, lots of emotion, but there were also amazing moments of connection and love in those early days. There were times I wanted to scream out WHY but every time I wanted to I would look around that nursery at the parents that surrounded me, I was so grateful Eden was born to us! My WHY ME never made it out, it only came out as WHY NOT ME. We were this girl’s chance at a great life and I could see that already. I knew these tears would pass, and I was looking forward to that day.
Eden remained in the Special Care Nursery for 2 weeks, it became evident that she was not going to feed alone, her heart was stable but it was too much effort for her to feed. We were deemed as responsible people, briefed in how to care for her at home, all that NG feeding consisted of and educated in what heart failure looked like, I won’t lie, I was nervous but we couldn’t wait to begin her life at home.
Some say the tears are the act of grieving the child you never had, I don’t believe that was the case for me, I had no clear picture of having a daughter, in fact the mere thought of it scared me. And the tears weren’t because I thought having a child with special needs would alter my life or our family life, I was coming to terms with that. The tears were because I didn’t want Eden to become Israel’s responsibility, I didn’t want his life to change course because of her… If only I could go back and talk to the former me, let her know, it’s all ok! Show her pictures of her son and daughter playing and laughing. Let her know that he will love her more than he does his parents (he tells us regularly). Let her know, that he gets it, he totally gets it, he understands the meaning of Down syndrome, he understands the implications that this may or may not have on Eden, and he just loves her more. He tells me often that being different is ok, it’s just different.
After 3 weeks of tears I decided I had two choices I could keep crying, stay in this state of woe is me, risk not connecting with my daughter and risk spiralling into postnatal depression. Or I could make a choice to stop crying, trust a God who created her just the way she is and get on with the task at hand, loving my family and getting to know Eden apart from her diagnoses. We needed to get her through to heart surgery, then we hoped it would be at 6 months, it happened at 10 weeks, but that’s a whole other post!
When I was pregnant we knew we were having a girl. I used to pray every day for a daughter that was different from the rest, one who stood out from the crowd, a daughter that wasn’t caught up in the ways of this world…
Some people say be careful what you pray for, I say pray with reckless abandonment!
If I knew before Eden was born that she would have Down syndrome, I would have said God has it wrong, there’s no way I can parent a child with special needs. I would have been fearful and looked at only my insecurities. But that’s not how it is, more than Eden needing us, we needed her! She brings out the best in our family, individually and collectively. Already she’s taught us many lessons in acceptance, love, faith, beauty, hope and happiness.
We LOVE our girl and when it’s all said and done, WE WOULDN’T CHANGE A THING.