Hand to Hold's official blog
As a nurse, Bea Smith (TX) found the roles reversed when her son was born with a congenital condition, imperforate anus (IA); he had no anus. He had surgery at two days old, spent a week in the NICU and has had three more surgeries to create an anus and to correct his spine. Diagnosed with VACTERL, an association of conditions, he also has kidney/bladder problems and had a tethered spinal cord. Bea is the mother of two daughters in addition to her son. She is adjusting to her role as a rookie special needs mom, balancing family, friends and work with a little humor and a lot of faith, chronicling it all on Caring Bridge.
For me, the hardest thing about being a parent to a special needs child is watching Caleb, our son who was born with VACTERL, go through what he has gone through: a NICU stay, four surgeries, numerous hospitalizations and ER visits, countless specialist appointments, lab draws, radiology tests, daily medications and treatments, therapy, etc. All [...]
Colostomy care. Not exactly covered in any parenting class. My son Caleb was born with VACTERL and required a colostomy at two days old. He had his reversal at nine months old. These are the tips and tricks I learned about colostomy care and bag changes. Always discuss any change to your recommended or prescribed [...]
Our son Caleb was born with a rare, not well understood condition called VACTERL association. The rarity and severity of his condition pushed us to go to Cincinnati Children’s Hospital for his medical care – over 1,000 miles from home. We have traveled to Cincinnati four times in the past year-twice for consultations and tests, [...]
Truth be told, I have always been very organized. A useful skill after my son Caleb was born with VACTERL association as it helped us to better navigate his seemingly endless specialist visits, therapy, hospitalizations, surgeries, medications, and insurance. Read on for my best organization tips. [Read more]
Last summer was the summer of hospitalizations. Prior to that, no one in my family had been hospitalized except the two times I gave birth and had to stay overnight. Last summer though, not only did I give birth to my son Caleb, but he also had a week-long NICU stay and three subsequent hospitalizations for several days each in less than three months. To say we were overwhelmed is an understatement. In that state of shock, which began in the NICU, we hesitantly (gasp!) asked for help. I am not sure what it is that made us feel ashamed in asking for help when we clearly needed it- perhaps we all want to seem like we are in control (though nothing could be farther from the truth) or perhaps we were afraid it was a sign of weakness. Lucky for us, family and friends stepped in to help when we sent out the SOS call. [Read more]
This past May, Caleb turned one. A huge milestone as this was a big year for him with one NICU stay, seven hospitalizations, four surgeries, and three trips to Cincinnati Children’s Hospital where we travel for his medical care. We planned a big party to celebrate. Of all the things that go into planning a party, food was a major concern. [Read more]
Howdy, I’m Bea and I’m a special needs mom. Doesn’t quite roll off the tongue, perhaps because I, myself, am still coming to terms to being a special needs mom. For the past five years I have been just a plain ol’ mom, occasionally SuperMom or #1 Mom, but more frequently MOM!, mama, or mommy (repeat [...]
Hand to Hold is a nonprofit 501(c)3 parent support organization and information and resources provided here do not intend to take the place of the relationship between a patient and personal physician.