Oliver and Bee - Living Life With An Extra-Ordinary Chromosome

Dear new Mamma with an expectant or confirmed diagnosis of Down Syndrome for her baby, I see you. I see you feel as if you've been hit by a wall when your doctor delivers the news. I see your heart sink and you wonder, why me? I see you sit and overthink, research for hours on end. I see you worry. I see you cry, and grieve, for a baby you thought you had. I see your guilt, for feeling the way that you feel. I see you rub you belly, so in love, yet so distant, so scared. I see you watch and look at others with Down Syndrome, worried for what the future will bring your child. I see you smile when you feel those first kicks and rolls, but wonder, will my baby crawl? Walk? Talk? I see you feeling lost, like you have walked 1 step forward and 2 steps back. I see you hold it all together, I see bravery, love, kindness, and hope. I see a fierce woman, one that would still protect her baby with all of her being. I see you becoming the m...

When I found out I was going to be a mother, I didnt expect to be on the journey I am on. I didnt think this would be my life. Im not any stronger because of it. Im not "meant" to be the mother of a child with T21, it just happened! Having a child with T21 is both rewarding and heart wrenching. I see his struggle, and I see his strength. Hes my happy, loving, gentle, shy and courageous baby boy. He loves to splash around in the bath and make a mess with his food. He cries because he is tired and when hes in pain. He does all the things a typical baby does, but he also does more. He uses all his strength in each and every movement. He persists and never gives up, even though its hard. Hes thrown hurdle after hurdle, but he never stops jumping, running, untill he reaches the finish line. He suffers through pain only we can imagine. Did you know hes been poked and prodded with needles more than 100 times? He bares scars on his chest, his tummy, his little foot, hi...

The last few weeks have been hard. Oliver has been sick and Its taken its toll. But I want to break it down for the people who just dont get it. Please let me help you to understand. I see your eyes roll when I tell you about my son being sick and how having Down Syndrome and congenital heart disease affects his immune system. And I get it.. Ive said it a million times before and your sick of hearing it. But it terrifies me. But what I dont tell you is I suffer major anxiety each time I hear him cough. I wake up and I can see in his eyes that he is not well, and I instantly feel my stomach turning. Because I know how quickly it can get worse. I sit up awake at night staring at his chest, watching it rise and fall, because I know what It looks like to be in respiratory distress from something as simple as a viral infection. I see the doctor about each and every little thing, because I need the reassurance that its not as bad as I make it out to be in my head. I take him to...

As time creeps closer to 21st of March, (World Down Syndrome day.) I find myself reflecting on this time last year and the motions I was experiencing after a diagnosis of down syndrome for my son. I had decided to overcome the fear of Oliver's diagnosis and felt I could do this by sharing with people that he in fact had Down Syndrome. I felt I was holding something back by hiding it from people. I felt like down syndrome was a burden on my shoulder and I didnt know how to overcome it. I made the decision to share with friends, family, and work colleagues, and the parents and children at my work what was in store for us. And let me tell you it was the best thing I did. The support I recieved was unimaginable. The love and strength I felt was amazing and down syndrome no longer felt like something to be ashamed of. I was bloody proud and I wanted EVERYONE to know it! It makes me sad now to think of the feelings I felt during that time and how unsure and afraid I was. But o...

After what was another set back for Oliver, needing to go back onto Hi-flow for the extra support. The team of baby doctors had consulted with each other and decided it was time. Oliver was 3kg and at this point it was more of a risk not to do the surgery. He was in heart failure and he was struggling, he had fluid on his lungs which was managed with lasix. (A medicine that helps to drain the fluid, he literally weed it out.) And he was exhausted, his little heart was working over time to do the job it was supposed to do and it just wasn't cutting it anymore. We moved over from The Woman's Hospital to The Royal Children's Hospital. It was a strange move, very surreal. We had been at The Woman's 11 weeks and as strange is it is, it felt like our home. We knew the nurses, the doctors, our way around the hospital, it was comfortable. Moving to The Children's was daunting, we didn't know the doctors, we hadn't met the surgeons. It was a new social worker and a...

An interesting weekend to say the least! The thing about being in here is that some days are good, and some days suck. Today is that sucky day. And although the good days generally outweigh the bad, the bad hit hard. Each day is different and I never know what to expect. Oliver went into heart failure at 10 days old and ever since he has proven so strong and tough to come this far without surgery. My poor darling is exhausted, he has been working hard with breathing and having desaturations since Friday, he went back onto Hiflow as he was just so exhausted. Its given him a break and he is finally resting after a very restless day. His surgery is creeping up on us and although the thought of my baby having open heart surgery terrifies me, i cant wait for this to be over and him not have to fight so hard anymore. I dont normally write posts like this, I like to share the good things and not the bad, there have been so many hurdles and struggles along the way. I like to be positiv...

Theres something about those raw unedited images of a new mother that gets me everytime! The ones that show the beauty of a woman that has just become a mother with the look of complete and utter love for her child. The look that shows she will always protect her child and put them first. She is completely vulnerable, she wears no make up and hasnt brushed her hair! She hasnt showered or managed to brush her teeth. She is extremely exhausted, sore, swollen, battered and bruised from the journey of her babies delivery. She is filled with a kind of joy that is unexplainable. One that you cannot compare because it wouldnt even come close. The world around her completely falls away and her only focus is the life she has just created. Her struggle and stress from the chaotic journey she has just endured comes to a stop and she finds herself at peace. The fear and worry, wonder and anticipation that have filled her heart for the last 8 months slowly disappear and she finds he...