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Honoring Diagnosis Day, by Heidi Indahl

Diagnosis day can come with a myriad of emotions. In some cases, I’ve felt relief at having our struggles acknowledged and a plan for moving forward. For others I’ve been extremely emotional, feeling deeply the pain of what I know will be a difficult journey. The diagnosis day that sticks with me the most is actually one of pure shock. I couldn’t believe they were just going to send her home with me. I didn’t know anything! How could they expect me to take care of my child? Regardless of the feelings that came on diagnosis day, I think it is valuable to continue to acknowledge the presence of this powerful day on your person, your child, and your family. It has formed you and continues to form you as a person. For me, this starts with reality. There is no use judging yourself for the emotions that you think you should feel. Simply acknowledge and accept them whatever they are. There is no right and wrong here, there simply is what is. If you are in a good place and feeling grateful, celebrate. If you are struggling and things are not looking so great right now, rest and acknowledge those emotions.

Here are two heavily contrasting scenarios involving the extreme ranges of possible things you might feel when you remember your diagnosis day.

Has your child exceeded all odds? Make it a family celebration! Bake a cake, plan a special event. Whatever way your family tends to celebrate important events, plan something to honor the event. Consider inviting other children and family members to share how your child’s journey has impacted their lives for the better.

Depending on the nature of your child’s diagnosis or condition, they may be quite aware of this extra challenge they are living with. Take this opportunity to let them know how grateful you are that they are a part of your family and the blessings they bring. As they grow into the teenage and adult years, they may be taking more responsibility for their own care and having the direct affirmation of friends and family will give them strength they can draw on if they are struggling to find their own sense of intrinsic dignity and worth.


Has your child since passed away? This is a tough one. I am so sorry, truly. Every year at the end of October I start to have a pit in the bottom of my stomach as I remember the day we had confirmation from the experts that our daughter Sienca would not likely live to or through birth. In some ways, the day is harder for me than the day she passed. The day Sienca was born we had the comfort of family and friends, the grace of the sacraments, and we had time to prepare. Diagnosis day, we sat alone in a hospital room waiting for test results for hours.

Over the years, I have found the best way for me to honor this is to make space for the emotions I know will come. I do this by keeping my schedule open because I know that I will be moving slowly. I take time to step away for extra time in prayer and adoration. I make use of my journal. I remember and I sit with whatever I am feeling that day. Every year, I enter this period with dread but every year I come out a little stronger. I find myself a little more resilient because I have had compassion for myself and accepted the reality of my loss and the strength of my emotions.

As a special needs parent, pushing through our own fatigue and emotions is often necessary. It is not, however, indefinitely sustainable. If you are struggling with the effects of a long drawn out diagnosis period, an involved trauma, or other difficulties, please reach out to someone. Supportive communities come in all shapes and sizes such as the comforting ear of a friend, online forums, and professional therapists and counselors. Do not hesitate to reach out for help. Regardless if your emotions are powerfully positive or negative when you think about diagnosis day, take the time either individually, as a couple, or as a family to honor those feelings. Feeling more than one thing? Feeling conflicted is normal too. Maybe a party in the morning with some planned respite in the afternoon to take time alone with your complicated emotions surrounding this important day on your journey. How do you honor and acknowledge diagnosis day in your family?


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