Over the last two weeks our daughter, Chiara, has hit a milestone. A big one. She has learnt to go from lying down to sitting up. All by herself. While this may not seem like something to write about, to us and Chiara this is a huge achievement. Chiara is 15 months old and has Down’s syndrome. The first few months after her diagnosis were spent in denial..at least on my part. She fed exceptionally well from the breast and from the bottle, had good muscle tone and seemed acutely aware of her surroundings. I would constantly tell myself that maybe she didn’t have Down’s, maybe she was misdiagnosed. But since her first birthday we have noticed an increased delay in her development. This was hit home when I dropped Chiara and her elder sister, Amelia, off at my parents for the day. Their youngest cousin was there, who at six months, can feed herself and when I held her I could feel that she had a strong core. Nether of which I can say about Chiara, which fills me with a great sadness. While I’ll never pitch children against each other in terms of their achievements I couldn’t help but notice it. What’s more it’s a divide that will only increase as they get older.
After Chiara’s diagnosis both Marlo and I were plunged into a void. A void of unknown certainty, of unanswered questions and fear. While no parent knows what will become of their children the uncertainty is amplified when you have a child with Down’s, or any other behavioural/cognitive/genetic condition. I could not love my daughters any more if you paid me. My love for both of them grows exponentially each day with each new word, each new milestone and with each new demand. Although Chiara’s development will be delayed and she may not achieve even that which comes so easy to other children; Marlo and I have sworn that she will be granted every opportunity that is granted to all children. We want her to attend a mainstream school, have friends and to gain as much independence as is possible. We want her to grow into her own person.
While Marlo and I work tirelessly with Chiara none of it could be possible without the excellent support from the National Portage Association or Portage as they’re better known. They organise day trips out, provide valuable information for parents and host weekly groups for the children. The groups include:
Sensory and cognitive development
Speech and language therapy
And that’s just the start. Just as important it also gives parents the chance to have their fears and uncertainties rolled up into little balls and thrown out the window. I can honestly say that Marlo and I wouldn’t be the parents we are to Chiara without the support and care we have received from Portage. The group is made up of staff and volunteers who all show unwavering love and affection for all the children. I can’t thank them enough for all they have done, directly and indirectly. I also can’t thank them enough for all they are yet to do. You make having a daughter with Down’s the joy it should be. Focusing on the positives and dealing with the negatives with a breathtaking confidence that puts both Marlo and myself at ease and it lets us get on with raising both our children. Thank you.
My biggest fear for Chiara is that she won’t be integrated into society and will suffer intolerance from the ignorant. So far I have been shown that I have little to worry about. Not only has Chiara been accepted into our loving family and is adored by her older sister she has also been accepted into another family . Both Amelia and Chiara visit a childminder, Kim, two times a week. Kim has two young boys aged four and eighteen months. I was informed that the younger of the two still can’t say mama yet but he can say Ra Ra, That’s baby for ‘Chiara’. So you could say that phase one of social integration is complete.
Neither of my children are expected to grow into my expectations. I do not want to live vicariously through them and I don’t ever want them to feel that they don’t have a choice. All I truly want is for them to be happy.