The Phases I Went Through After My Child's Diagnosis

People often ask me what advice would I give to a mum who is coming to terms with her child’s diagnosis. To be honest, in those early days there is not much you can say to a grieving mum. It can feel that unless you have a cure or solution, there is nothing that can fill that void in your heart. Seriously, when you’re told your child may not live a long life, let alone experience great physical challenges all the days of their life, it’s a lot to comprehend, let alone accept.

So I always start with compassion and allowing mothers a space to grieve, to honor their feelings around fear, anger, worry, exhaustion and loss. It all has its sacred place in paving a new pathway, which in the end, ironically has the potential to be one of the greatest gifts you will experience in their life time. I don’t need to tell them that though, they will by default live their way through all the ups and downs to find their own unique way of acceptance and meeting the road less traveled. The have every ounce of courage, grace and love reflected to them through their child’s eyes.

Here are 55 phases that sum up my personal journey from complete loss and despair to miracles and magic. Some I moved through quickly. Others hung around to teach me painful, yet powerful lessons. I would not change any of my learnings, for they have been my greatest teachings.

1.Deep intuition that something just wasn’t right. The conversations with my partner of close family and friends that I was feeling concerned.

2.The responses from those around me, like “She is fine, you just need to rest,” “Don’t be so worried, everything will be OK,” and “See? She looks perfect.” Then comes the frustration that the world does no understand a mother’s heart. Why aren’t people listening to me?

3.“The talk” with the pediatrician, the tears, the worry, the letting it all go. The relief when she responds with, “Yes I hear you, let’s do some investigating.”

4.The “pre-diagnosis” meetings with the genetic team, the wishing I could read their minds as they ask me questions and go through each specific detail.

5.The test results that come back clear, yet I’m still feeling uneasy and unsure.

6.The next meeting with a team of genetic doctors who together ask more questions and I can see their tone shifting, changing. I know they know something I don’t.

7.The brain MRI test at the Royal Children’s Hospital with the hint of concern from the genetic doctor. “Yes Natalie, I think there are some very valid concerns for your daughter. Let’s wait and see what the tests say.

8.The pre-medication to make my daughter drowsy so that she would sleep through the MRI scan and remain still.

9.The look on the nurse’s face after the scan was over, and the compassion in her eyes.

10.The rush of blood to the heart when I heard the phone ring the next day.

11.The tone of the receptionist’s voice, “It’s urgent Natalie, we need to see you and your husband immediately.”

12.The long drive to the hospital with my mind circulating through probable scenarios. How bad could it really be?

13.The look of my husband’s face when I met him in the waiting room.

14.The dropped eye gaze from the doctors as they called us into the room, the feeling of dread rising through my being.

15.The words that started flowing and felt like a nightmare.

16.The shock of “never,” “no cure,” and “limited life-expectancy.”

17.The sobs and tears that fell onto my daughter as I held her 5-month old body close to my heart.

18.The confusion with medical jargon and the relief when they were clear and blunt — all I wanted was the facts.

19.Walking out of the hospital and feeling like I was falling into the abyss.

20.The rainbow that shone against the grey sky.

21.The pause where I made a pact with the universe to never give up, only to then be overcome by another wave of immense grief.

22.The aftermath of trying to share a complicated story to family.

23.The platitudes that came.

24.The wish for everyone to be silent unless they had a cure to heal my child.

25.The grief, oh the hours, days, and months of grief.

26.The desperate search, googling at 1 a.m., 2 a.m., and 3a.m.

27.The shutdown of social events. I just didn’t have the energy to show up to events and “play normal” when my life felt like the opposite.

28.The breakdown in communication with my husband. We were both grieving at different times.

29.The onslaught of appointments, phone calls, waiting rooms.

30.The pleas to God to please, please, please don’t let her suffer.

31.The surreal meetings about adaptive equipment and daily therapies.

32.The taking action and looking “outside the box” for help.

33.The continued search to help my daughter reach her full potential.

34.The deep meetings with incredible psychologists and healers.

35.The twinkle in my daughter’s eye.

36.The inch-by-inch milestones.

37.The getting familiar with hospitals and those tough conversations.

38.The feeling of the sunshine as it touched every fiber of my being.

39.The feeling of catching my breath again.

40.The transition back into life again and outside the bubble.

41.The 200th hospital visit and knowing the café staff by first name.

42.The incredible therapies that began to expand our daughter’s potential.

43.The long gaze into my husband’s eyes and silently saying to one another “Wow, we’ve got this!”

44.The confidence of a mechanic with all the adaptive equipment.

45.The waking up and realizing this is your new normal and life is going to be OK.

46.The connections with other families who get it.

47.The feeling like life expanded into a whole new dimension and I just woke up.

48.The strength, the courage, and the compassion. The forgiveness and the grace.

49.The belly laughs that bring you out of your mind and back into your body.

50.The connections to miracles and purpose.

51.The loosening of the tight grip of control and trusting in something far greater.

52.The inner knowing that in the big picture, everything is going to OK.

53.The moment where you literally live through a full 360 degrees; however instead of dread, overwhelm, and grief, you are happy, connected and supported.

54.The moment you truly let go and open up to literally a whole new world.

55.The expansion that life has shifted, lifted, and gifted you in the form of your beautiful child.

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