**You can also view this interview on the Mommy Perks VIP Blog…
Many of you already know my background, in regard to my son’s prosthetic eye and why I began my PCS business to help other kids work through emotional and/or behavioral struggles.
I recently clicked a twitter link to read a Ficklets review…which took me to a website about a little girl who wears glasses because of her prosthetic eye.
To be honest, this is the first parent I have come across who also has a small child with this special need. Most of the people I know, with prosthetic eyes, are much older. The eyes have been lost due to Diabetes or other medical complications. Some of these people were born with eye diseases many years ago, before modern medicine was able to offer significant help. In return, the eye shriveled up and died and had to be removed, after much damage to the face was already done.
Today, mothers like me (and Bridgette) have options, choices and wonderful medical help to call upon. That, in and of itself, is a huge blessing, as I see it. We want the best for our kids and now we can seek it.
Get to know Bridgette and her sweet little girl, Gracie! (We both have a daughter named Samantha, too!)
What was your child’s diagnosis?
Gracie was diagnosed with Glaucoma at age 7 days old. We could not see a pupil. Her eye was just blue. She had her 1st surgery at 8 days old-a Trabeculectomy. Of course it was very upsetting because she was so little and we were scared to put her under anesthesia.
The surgery was not successful. A Trabeculectomy is a surgery that puts a little cut in the tear duct to relieve the pressure in the eye. Unfortunately and quite ironically, babies heal very quickly and easily. So her eye healed itself of the cut. They tried a second time at 30 days old.
She was a very fussy baby and we were told it was colic, but Joe and I could tell that her eye caused her a lot of pain. The doctors decided to try to put a stint in her eye in a 3rd surgery. This was to keep the cut open. When they did this they had a cataract specialist look in her eye to see if she would need a transplant, as well as, a retinal specialist to check the health of her retina. We were not sure if she could see out of that eye or not. The cataract specialist determined that she would need a transplant and the retinal specialist said her retina was detached. After another test, it was determined that her retina could not be reattached. After much discussion and a lot of prayer, we decided that, although we could try to control the pressure in her eye with eye drops and/or additional surgeries, it would not be worth it because she would not have vision in that eye. We made the decision to have the eye enucleated. Actually, we were not upset about it. We felt she was in a lot of pain, even though they assured us that she wasn’t, and we were ok with her having a prosthetic. Her real eye was twice the size of her good eye because of the glaucoma and it was completely blue. It did not look good at all and we felt a prosthetic would look better. It did. And, she was a completely different baby immediately. I mean the second she woke up we could see and feel her relief. We were vindicated (in our eyes anyway).
Gracie was diagnosed with Neurofibromatosis Type 1 around age 6 months. We assumed she did have it because she had the tell tale Cafe’ a lait spots and Joe has it. We did not put the diagnosis together with her eye issues until she was 15 months old. The size of her eye socket kept getting bigger compared to her remaining eye even after the eye had been removed. They did an MRI on her brain and we found that she has a Plexiform Neurofibroma Tumor on her brain involving 4 cranial nerves and her carotid artery.
Tell us more about your family:
Gracie is the 4th child in a blended family. Kayla is the oldest, at age 14-from my 1st marriage. Samantha is 2nd at age 10-from Joe’s first marriage, Benjamin is 3rd at age 8-from Joe’s first marriage and Gracie is 6 and is “ours”. All of our children live with us and visit their other parents 2x a month. I am Sam and Ben’s “Legal Guardian”. Their biological mom has visitation rights only.
Does Gracie get teased by other children?
Gracie is not teased at all yet. I’m not even sure the kids really notice or care. We started telling her classmates in preschool. We wanted children to be aware and explain safety issues-don’t throw crayons, whatever. It doesn’t seem to really phase them yet. We’ll deal with it when/if it comes, but her prosthetic really looks pretty good. Not a lot of people notice it at all.
Gracie is very petite. We recently started her on growth hormone. So the older kids grades 1st-6th love her. They think she’s a little dolly in her little glasses. She currently enjoys rock star status in kindergarten, but acts like it doesn’t phase her that everyone dotes on her. She’s a character.
What has this situation taught you? Any life lessons?
I think I’ve become a more patient person and mother. Even though every night when I’m saying my prayers, I ask God what he was thinking when he entrusted me with these special kids, 2 of whom aren’t biologically mine. There are many frustrating days.
I’ve learned to empathize with parents with special kids. I always recommend advocacy to families with special kids. If I didn’t ask the questions, and demand the tests, things would not get done.
What advice do you offer other parents in a tough situation?
I think Spirituality, in any form, is completely necessary. I was raised in the Catholic Church and so was my husband. Until about 2 years ago, we never attended church at all. 2 years ago we decided to go church shopping and found a Christian “congregational” church that we love and find it’s support a necessity. I find it completely necessary to refuel my soul and go every Sunday, even when I don’t want to. Take it or leave it, that’s my advice.
Educate, educate, educate! I literally think I could take my M-CATs and get into medical school. The DOD (Department of Defense) has Congressionally Directed Medical Research Programs. One of the programs is for Neurofibromatosis Type 1 and 2. In 2005, I was invited by the Department of Defense to be the only consumer on a panel with 16 national expert physicians on Neurofibromatosis that decided how to spend $21 million budget. I’m very proud!
Any final thoughts to share?
It is said that Special Kids need Special Parents. I don’t feel like I was born for this purpose. I feel I have to work very hard to be that special parent. I have to wake up every day and pray to be that parent. Go easy on yourself. It is not an easy life.
GOOD INFO ON NF (NEUROFIBROMATOSIS)
Children’s Tumor Foundation
DOD’s Congressionally Directed Medical Research Program for Neurofirbromatosis
Me on Congressionally Directed Medical Research