In our journey, Ellis emerged as our first living child after grappling with the heartbreak of three previous losses.
By Liberty Nicholas
In our journey, Ellis emerged as our first living child after grappling with the heartbreak of three previous losses. The anticipation of welcoming a baby became a fervent wish, and during my pregnancy, a private scan brought forth a disquieting revelation—Ellis was diagnosed with duodenal atresia, a stomach blockage demanding immediate surgical attention upon birth. This unsettling commencement meant that we were ill-prepared for another revelation: a surprise Down syndrome diagnosis just hours after his arrival.
Ellis was swiftly ushered away post-birth to undergo intubation in the NICU. Four hours elapsed before we could embrace him, and it would be four weeks before he graced our home. The initial months submerged us in a torrent of appointments, therapies, and exercises, leaving scant room to cherish his infancy. The specter of an uncertain future loomed large, stifling the joy that should have accompanied his babyhood.
Fast forward to our lives so far with his little sister Aubrey and whilst I was given extra monitoring during my pregnancy, my labour was pretty straightforward. Aubrey was handed to me straightaway and we were able to go home together the next day. With Aubrey I don’t have developmental milestones as targets, and I am not being told each day how to care for my baby. It’s so lovely for things to now be so laid back but it also feels a bit surreal to be so relaxed and in control of my child’s care. The experience of motherhood is so different with both of my children and whilst we never imagined having a child with Down syndrome, I feel so blessed to have Ellis in our lives, showing us all just how hard he is prepared to work at everything. It’s not the family unit I had hoped for when I was younger… it’s so much more!
If I could say anything to someone who is dealing with a new diagnosis I’d say:
- Remember this is your baby. All they need ultimately is to feel loved by you.
- The milestones will come, even if it takes a little bit longer for them to reach them.
- Try to join a local support group or find people online that live nearby. Finding your tribe through all of this is even more important than ever and it helps to have people who understand.
Having two under two isn’t always easy but I find getting out of the house every day helps me stay sane. Obviously in order to do that you need to make sure you have the right pushchair. I’d say when looking for a pushchair you need to find one that is easy to put together, one that your babies are comfortable in and for me it also must look good!
The passage to the family dynamic I cherish today has been arduous. Although it diverges from my youthful visions, its magnitude surpasses every expectation.
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