#19 Questions for Others (Guest Post - Faith)

Today's prompt challenges me to write about questions I have for other patients. I love to learn from others who have blind and visually impaired children. I often do that on Thomas Marshall Does It All by featuring guest posts by parents.

Today I am featuring Faith, a sweet three-year old from St. Louis who has overcome so much. Her mother Bridget shares their story below.

Faith!

Tell us a little bit about your family and your child:

My name is Bridget Wildschuetz. My husband Mike and I live in the St. Louis area in Missouri. We have two incredible children, Faith and Graeme, and a dog named Trinity. Faith turned three-years-old in September. Our family recently expanded with the birth of our son, Graeme eight months ago. Faith is our daughter with special needs. She was born full term on September 10, 2009, in Austin, TX with a condition called bilateral anophthalmia. Her eyes did not develop at all and she is completely blind. Faith spent 29 days in the NICU due to breathing and feeding issues.

Faith also has bilateral sensorineural hearing loss, feeding issues which resulted in the placement of a G-tube, global developmental delays, and a severe sleep disorder. Faith also has neurological issues resulting from brain abnormalities, as well as endocrine and gastrointestinal issues. When Faith was about 3 months old, genetic testing revealed the cause of her anophthalmia. She has a gene mutation called SOX2.

Our journey of raising a child with special needs began during my pregnancy with Faith. We found out that Faith’s eyes did not develop during an anatomy ultrasound that I had around 19 weeks. You can read more about this life- changing day at http://superbabyfaith.com/april-14th/

Name your child's five favorite things:
Faith loves cuddling, music, swinging, silly sounds, and giggling with daddy.

Any new milestones you want to brag about? (Big or small, they all count.) Faith was just awarded an iPad and seems to really enjoy it. She is doing really well with the Baby Finger app!

What is your favorite local resource:
Delta Gamma Center for Children with Visual Impairments

What is your favorite web resource:
Various online forums and supports groups for parents of children with anophthalmia, multiple disabilities, etc.

What has therapy (Early Intervention, school, or private) been like for your child? Faith had an incredible team of therapists through the Missouri First Steps Early Intervention Program. She had OT, PT, speech, vision, and hearing as well as a dietitian to help us. We have also had a great deal of support for Faith and our family from the Delta Gamma Center for Children with Visual Impairments.

Faith recently transitioned to preschool and is now getting all of her services through our local school district. So far, it is going really well!  Faith participates in water therapy once a week at a local pediatric specialty hospital. She loves the water and does really well with this therapy!

What do you wish people understood about your child? 
Like any child, Faith needs so much love and attention. Even though she can’t see you, she wants your attention. Please acknowledge and interact with her instead of ignoring her. Ask questions, please don’t just stare. I am eager to educate others about Faith’s condition and how to interact with her.

Can you think of one thing that really improved your life that you want to share with other parents? I have connected with other moms of children with special needs that I can talk to. I am part of a local group for moms who have children with visual impairments and other special needs. Even if I can’t get to the outings, I can talk with these moms on the phone, through email, or facebook. I have also been able to connect with other moms all over the world that have children with similar conditions. There is a great deal of comfort in knowing that other moms understand your daily joys, triumphs, challenges, and struggles.

What advice would you give to new parents of blind children?
Faith is three years old and I still feel like I am in survival mode keeping up with all of her needs so I’m not sure that I have any great advice but I will say that my motto has always been “keeping the faith,” even when life is really tough.

When I am working with Faith, I try to imagine what her world is like. Even though I will never truly understand, I try to keep in mind how different things are for her when introducing new things to her or just interacting with her in general. Lots and lots of narrating! I talk to her constantly, telling her everything that we are doing and what is going on around her. Anticipation and cause/effect are two big things that we have really worked on to help Faith experience and tolerate her environment. For a new parent of a blind child, I feel these are really important.

My second piece of advice- If your child struggles with sleep (and Melatonin doesn’t work), see a neurologist as soon as possible. As the eyes are an extension of the brain, many blind children and children with neurological issues struggle greatly with sleep. Faith had severe sleep issues for the first 18 months before we got any help from sleep medications. It is still a big issue for us but we at least have a neurologist that gets what is going on and works with us. Sleep deprivation just increases the already overwhelming stress on a family of a child with special needs and can make life seem very unmanageable.

Waving Hi to the bloggy world!

Anything else you want to say?
It takes a village to raise a child. When it comes to raising a special needs child, you really do need all the help you can get. I am so grateful for family and friends that help in even the smallest ways.  Life can be overwhelming and most days it is just impossible to do all the things you are “supposed” to be doing with your special needs child.

My biggest challenge has been taking off the “therapist hat“ and just letting myself be Faith’s mother. Sometimes I have to realize that she just needs my love more than anything. In the big scheme of things, the list of things that every therapist wants me doing with her everyday isn’t as important as the love and affection she needs and deserves from me. Sometimes we all need a break from therapy!

Even though Tom's struggles are different from Faith's I see so many parallels. Whether it's sleep, feeding issues, or therapy overload, sometimes you just need to slow down and take a break. 

Thank you, Bridget, for sharing Faith's story with us. She is obviously a special girl that brings lots of joy to your family.

You can follow Faith's story at: http://superbabyfaith.com