Krissie Saint-Vil of Huntsville admits that learning to cope with having a child with disabilities is anything but easy.
"My sweet little boy is the biggest challenge in my life; but one that I wouldn't trade for anything in the world," Krissie said.
Lybel, 2 years and eight months old, has been diagnosed with microcephaly, epilepsy, gastroesophageal reflux disease (GERD), and development delays.
In his young life, Lybel has undergone eight surgeries, including: the placement of a feeding tube among many others.
Lybel began receiving Early Intervention, physical, occupational and speech therapies at UCP of Huntsville and Tennessee Valley in January 2007, as well as Alabama Respite services. He also participates in UCP of Huntsville and Tennessee Valley's weekly playgroup while Krissie attends their parent group.
"For Lybel, the playgroup gives him a chance to be around children his own age in a secure environment," Krissie explained. "He may not be able to do what the other children do, but I know he enjoys observing their actions and play."
"For myself, the parent group enables me to share experiences that parents with healthy children wouldn't understand, like why it's so amazing that Lybel opened his hand or that he started making eye contact with me for a few seconds."
Krissie feels that her daughter, Mahlana, 5, would also benefit from the creation of a sibling support group.
"A sibling group would be fantastic," Krissie said. "It's hard on a daily basis for siblings of special needs children. Even though they often take the backseat to the needs of their brother or sister, most do it humbly. They need their own safe place to be able to vent their frustrations and be guided in the right direction of how to deal constructively with their feelings—a place where it's OK for them to 'complain' with others who understand and have that same 'complaint.'"
And while having a little brother with special needs is definitely hard, Krissie added that Mahlana loves Lybel very much.
"Each day she comes home from preschool and curls up next to Lybel," Krissie explained. "They watch cartoons together until they both fall asleep for an afternoon nap."
Krissie went on to say that the family's dog, Gandolph, also loves Lybel.
"He is a snow-white American Eskimo dog who watches Lybel attentively while outside," Krissie said. "Gandolph seems to be very cautious while around Lybel because he won't jump on Lybel or his Kid Kart (a pediatric transportation chair). When Gandolph comes to greet Lybel, he will carefully and slowly put his paws up and stand on his back legs to become eye level with Lybel. Gandolph will then lay calmly beside Lybel's Kid Kart until time for us to come inside."
Krissie describes Lybel as a very sweet little boy who loves to cuddle and often calls him "My Baby Bear." However, Krissie has a sneaking suspicion that Lybel may have another favorite cuddle pal.
"Lybel's favorite person is his Nana," Krissie said with a smile. "She was the first one to hold him after he was born and he's been in love with her ever since. Any time Nana is around, Lybel gets snuggled with the whole time."
Krissie said she and her family are thankful for the physical and developmental improvements that Lybel has made since he began receiving UCP of Huntsville and Tennessee Valley services. She is especially excited to see Lybel practice his therapy at home.
"He has organized his own therapy by maneuvering his hands up to his tracheotomy and pulling his 'nosey' off," Krissie explained. "Several times a day I'll find his little hand clasped around a nosey down by his side."
"I truly believe Lybel would not have improved the way he has had it not been for the services we receive through UCP," Krissie added. "I personally have gained great knowledge from the training I have received from the therapists. UCP has been our foundation to an amazing support system."
As a result, Krissie wants to help other parents who are learning to cope with having a child with disabilities.
"Because of UCP, I am able to help other parents who may not know that there are services to help them. Also, if anyone has any questions related to Lybel's diagnoses, surgeries, or whatever in dealing with life with a special needs child, I would be more than happy to help."
Like Krissie, you can connect with an early intervention professional who can help you understand, plan and take action around a child's developmental delay by contacting the UCP Information & Referral Coordinator at the nearest UCP affiliate. Just go to www.ucp.org and enter your zipcode in the Find Your Local UCP search box.
Please visit My Child Without Limits and choose the "Community" tab to join the My Child Without Limits online community and share your story, ask a question or share your experience with other parents looking for helpful advice and resources.
For more information about this story, please contact Tracy Cieniewicz at (256) 859-4900 or visit the UCP of Huntsville & Tennessee Valley Web site.
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