I really don't know what to say. For three years, I've felt that I've been going through this all by myself. I felt like my daughter was the only one living with SB. It's been a tough road. We only found out when my daughter, Gabby, was born that she had SB. Our lives have never been the same. She had the worse form of SB: myelomeningcele. She walks however she doesn't have the ability to point her foot down; it flexes up. Gabby walks on the side of her feet and her feet point inward. She's always tripping, poor thing. She doesn't use AFo's yet. She can't stand still for long because she can't balance well due to her feet. She has loss of sensation at the back of her legs. Bladder and bowels don't function well. We cath her every 5 hours. She feels it and says the 'pee-pee tube' it hurts. Gabby at this stage can't pee on her own. She wears a princess pull-up. For her bowels, it just comes out, especially when she laughs or cries. She get 2.5ml of ditropan 4 times a day now and she drinks laxaday everyday to help soften her stool. Gabby has a shunt and it hasn't been replaced yet.I'm a mother of 4: age 7, age5, age 3(Gabby) and age 22months. Gabby is my only girl. My husband was accepted into Medical School when Gabby was born in April. That September he left home for school. Taking care of Gabby is the most overwhelming thing I have ever done in my life. I am so scared of when she starts JK in September 2011. Will the kids laugh at her because she wears a pull-up or can't run as fast as the other kids? When will Gabby know that she has SB? How will she feel? How will I explain it to her? Right now, she has a lot of cramping. The urologist says it's because she's constipated. I feel it's because of the medication. I had to get her to a diaherra state to see if the pain would lessen. It didn't. To see your child screaming and pulling at her privates so hard that it leaves scratch marks, kills me. Gabby had an ultrasound done 3 weeks ago and it showed her left kidney is swollen, urine is going back up into the kidneys. This scares me. I never knew that constipation leads to UTIs. How so? How can I make Gabby have a normal life? I'm seriously scared. I pray everyday for God to show me the answers. It's my faith in him that's getting me through this. Has anyone ever had terrible thoughts about your child with SB? I'm ashamed to say that I have, especially after giving birth. I have begged God to forgive me and to just sustain me.
SB is not easy to have nor easy to live with. I would love to hear of more success stories from adults, who can help me look forward to the bright future that Gabby can have. The hardest will be to start school. I'm having a meeting in January with the principal and the community care case workers and medical assistants. They will set up a special room for cathing Gabby and Gabby will have an assistant with her at all times at the school in class. Someone will be trained to cath Gabby and change her pull-ups.
She's only 3 and I just want her to live a normal life like any 3 year old child. Is that too much to wish for?
Thank you for listening to me. I've never had anyone to talk to about SB. I'm thankful for this site.
God bless!
Sharon
