In 2016, my baby was diagnosed with a life-threatening primary immunodeficiency. He spent most of his first year of life in the hospital, first to treat infections, then in a bubble to protect against infections, then for a stem cell transplant - the only way to save his life.

Stem cell transplant is a great mystery and poorly understood outside of the community of those who transplant, are transplanted, and survive transplant. What it does is wipe out your entire immune system & reset it from scratch. The pain, fatigue, vulnerability is unimaginable.

For months, even years after transplant, patients are vulnerable. Threats are everywhere. Infection can tear through the body and attack organs. Common bugs can kill you directly, or kill you indirectly by causing graft failure or triggering your donor's immune to attack.

My son developed a secondary illness called graft v host disease, in which donor cells attack his organs fr within. There is no roadmap for this - which organs, how badly, when and even if it will end. And the main treatment is immune suppression. He's on 5 immune suppressants.

All this to say: we have lived with fear and threat of infection for 5 years. We have lived in various stages of isolation, sometimes in full quarantine, sometimes more in the world. Isolation, fear, threat, grief. These things change you, sometimes forever.

Know this: the hardest part is the in-between part, when you're trying to negotiate with yourself about what feels safe, and when other people are in different places mentally.

It's lonely and alienating and exhausting to try to re-enter society.

My son started doing better in 2018, even tho his life is still full of meds+illness+hospitals. But, he is now surviving. Surviving is HARD. It's a journey with no single destination. Some survivors are sick forever. But society craves endings & ours is supposed to be happy.

Every time since then that I've seen people socially, even in small groups, even with old friends, I've felt worse. Sometimes I'm physically sick for 2 days. It's the anxiety that I may have exposed us, it's the fatigue . Mostly, it's trying to be someone I no longer am.

Be gentle with yourself. Others will not be gentle with you. They are in their own heads, and on their own timetables. It will take time to find connection again -- with others, and with yourself.

Wishing us all love and comfort in this next phase.