BY LINDSAY WEEKES

I like questions. 

I like asking questions.

I like answering questions. 

I’ve been known to ask many questions, some not always necessary but I like the affirmation of knowing I knew the answer. Or the gift of learning something new.

Seven years ago, just 7 months before Quinlan died, I started a list of questions that previously I never would have imagined I would need to ask or have answered (some that still remain answer-less 10 years later). Questions that include words I didn’t even know existed. And many are questions that no parent should ever have to ask.

Recently, I reread the list of questions and found myself comforted in a way as they transported me back to a time when Quinlan was alive – when we had naive hope. As scary as this time was, it was the only life we knew. It was the only life we knew with Quinlan.

The list continues but now since Quinlan’s death includes questions like:

“How do I make sure my younger son who never met his older brother feels connected to him?”

“How can I help other parents as a bereaved parent myself?”

“How do I make sure Quinlan’s legacy continues through us?”

I thought that by sharing, others may read these questions and feel connected or even safe knowing that they have asked these same types of questions. 

Living a life with a medically complex child or child with a rare disease often comes with more questions than answers. Sometimes writing them down and being able to see for yourself just how much you’re learning, how much you’re growing, and how much you’re advocating for the ones you love is a remarkable thing, even when it’s not something you ever wanted to do or expected to do in your life.

Post script: These are the questions I generated over the two and a half years of my son’s life.

1. What is tense muscle tone?
2. Why is my 24 hour old son getting an MRI?
3. What do these machines do?
4. What are all these beeping sounds?
5. What did the MRI show?
6. When can my son leave the NICU?
7. Why is his body temperature so cold?
8. Why is his mouth blue?
9. Why is he having seizures?
10. Will the spinal tap hurt him?
11. Will the EEG hurt him?
12. Will these medications have any side effects?
13. Will he ever walk?
14. Will he ever talk?
15. How many more EEG’s will he need to have?
16. How do we use this feeding pump?
17. Will the breathing tube hurt him?
18. Why is he on a paralytic?
19. How many seizures did he have today?
20. How many more days will he need to be on this antibiotic?
21. When can we hold him again?
22. Will the trach be beneficial in the long run?
23. How often do I change his trach?
24. Why can’t he sit up?
25. Who’s the nurse working with him tonight?
26. Was he awake enough for therapy today?
27. How do his lungs sound today?
28. When can he come home?
29. How many hours of nursing will we get a week?
30. How do you suction?
31. Why is his heart rate so high?
32. Why is he only SATing at 80%?
33. Why is Quinlan on precautions?
34. How many liters of oxygen is he on?
35. What is Brat1?
36. What are the chances another child of ours will have the same genetic mutation?
37. Are we emotionally ready to have more children?
38. When will the ambulance be here to bring him home?
39. How do I set up all these machines in the house?
40. Who is the nurse (aka stranger) coming to stay at our house tonight so we can attempt to sleep?
41. Why did the nurse call out tonight?
42. How am I supposed to stay awake all night after working all day to make sure he doesn’t have a seizure or miss any of his medications?
43. Did he have to go on any oxygen today?
44. What is his PEEP set to now?
45. How are the granulomas around his stoma looking?
46. Do I trust this person to change his trach in the case of an emergency?
47. How many ketones showed up on his test?
48. Will the keppra cause any issues with the trileptal which will cause issues with the topamax which could cause issues with the onfi which could cause issues with the Dilantin and could cause issues with the phenobarbital?
49. Who is the doctor on call when we bring him into the ER again?
50. Should I pack another overnight bag?
51. Can I take more time off of work while Quinlan is still in the hospital?
52. How do I say goodbye to him?
53. How do we go about donating his brain to research so this won’t happen to any other family?