A heartfelt thank you to all mothers of rare and undiagnosed children. You are courageous, strong, resourceful and resilient. Your immense love and persistence in advocating for the well-being for your children transcends through this community, you pave the way, share your wisdom and inspire hope for other families on the long journey to diagnosis and treatment.
There is no doubt that all mothers sacrifice and stay strong for their children amidst the most difficult situations. As mothers of the rare and undiagnosed, a multitude of challenges push strength and self- sacrifice to the verge of becoming superhuman. Faced with perplexing circumstances while under the constant squeeze of stress and perpetual lack of rest. Faith is challenged, finances drained and worry is heavy on your heart. You do not give up despite what you are told. You keep going, no matter what the day may bring. Your child’s quality of life is such a high priority that you have forgotten your own.
You are courageous to forge ahead despite what limits in lifespan and abilities you have been told your child has. To choose between a high risk procedure or surgery that could lessen quality of life maybe even end an already medically fragile life or to live life out to the fullest comfortably and with dignity.
You have strength you didn’t know you had both physically and emotionally. To keep it all together and carry your child through it all. Runs to the ER, stays in the ICU, invasive procedures and tests. And when the time comes and the reality of death is imminent, you know that you would trade places with them in a heartbeat. But instead, you are faced with the heart-wrenching task of letting them go on before you.
In pursuit of answers and possibilities you become resourceful. Scouring the internet, reading pages upon pages of research to stay abreast of new technology and developments in science and medicine. Reaching out to connect with specialists, scientists and other parents, learning from them just as they also learn from you.
You show resilience as you dance delicately on the fine line between protecting the health of your frail little one and allowing them freedom to experience the joys of childhood. You carry your burdens with grace every single day yet somehow, someway despite the unimaginable pain, and countless challenges you also find incredible joy too.
On this Mother’s Day, Keep moving forward, give hope to one another, you have superhuman abilities and know that you are appreciated not only being an advocate for your children but leading the way for other families like yours too.
In Good Health and Always Hope.
Founder and Patient Advocate
San Diego Undiagnosed Family Support Group