This week, we talk with Kimberly Gray.   Her daughter Sammie lives with Periventricular Leukomalacia, caused by Hypoxic Ischemic Encephalopathy.

 

Tell us a little bit about Sammie’s birth and the challenges she faces as a result.

I had a perfect pregnancy. Delivery, on the other hand, was very difficult. I was in labor for 20 some hours. The epidural made my labor stop so they had to give me pitocin. Once I was fully dilated, I pushed for 3 1/2 hours. They tried forceps and still couldn’t get her out. So I ended up with a c-section. Her apgar scores were 8 and 9. It appeared that she was absolutely perfect in every way possible. I could tell something was wrong when she was 2 or 3 months old. I couldn’t tell you what it was, I just felt it. The doctor kept telling me I was a first time Mom and I was just scared. When she turned a year old, she had never pulled to a stand or anything like that. The pediatrician just said she was a lazy baby. At 18 months old, she had her first seizure. They thought it was because she had a fever and that’s what triggered it. She another seizure the next day. So, they done and EEG and diagnosed her with Epilepsy. They referred us to a pediatric neurologist and he ordered an MRI. She had already had a CT scan and they said it was fine. This doctor said he wanted the MRI because it’s a more in depth look. The nurse called me on the phone with the results. She said your daughter has Periventricular leukomalacia caused by Hypoxic Ischemic Encephalopathy.  To put it in simple terms, my daughter had brain damage due to a lack of oxygen. I was devastated.

 

Do you have any other children as well? How did/does your family cope with the challenges that you faced and face? What helped you?

Sammie is my only child. I love her just the same as I did before her diagnosis. I had an extremely hard time at first. I blamed myself and felt so much guilt. I was her Mom and I was supposed to keep her safe. I felt like I had failed. My parents were very supportive. Sammie was their world. Her Dad and I are now divorced but at the time, he had a hard time coming to terms with it. He was in denial that anything was wrong. Needless to say, we had many arguments over it. He blamed me. Eventually, he came to terms with it.

We understand that Sammie just graduated sixth grade, which is amazing. I especially loved seeing her walk down the hall amidst cheering peers and families. How has her school experience been for her and for you to date?

School for Sammie was a great thing. She loved being around her friends and seeing everyone. Mentally, she is not on her age level but the kids were all so accepting of her. She worked hard to get to where she is today. We had a few hiccups along the way with the school. However, once I stood up to them and let them know what was acceptable and what was not, things improved. You have to know your child’s rights!!

Has she made nice friends in school that love and support her?

Sammie is in a Special Needs Class but she is around the typical kids as well. They all adore her!! She is nonverbal and doesn’t sign. They still include her though and still talk to her.

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Does Sammie have any hobbies? How does she like to spend her time?

Sammie loves books, older tv shows, dolls, barbies, throwing her ball, swinging outside, being around people, music etc. Sammie is a very happy little girl and she pretty much enjoys everything.

Have there been any therapies that have been especially helpful in improving Sammies’ function over the years?

Physical therapy has been great for Sammie. It has really helped her with strength, coordination and confidence when it comes to walking.

As a parent raising a child with CP, what has been your biggest challenge?

My biggest challenge has been trying to overcome the fear and the unknown. I was terrified when she was first diagnosed with everything. I thought it was the end of the world. Turns out, it was just the beginning of an amazing journey. I worry about what will happen to my daughter when I’m gone. I worry that she won’t understand it. I worry about when the time comes that I am unable to care for her.  I have dealt with hateful  comments from people and that has broke my heart. I’ve always wanted everyone to see Sammie for the amazing little girl that she is. Unfortunately, some people only see what she can’t do. Not what she CAN do.

As a parent raising a child with CP, what has been your biggest joy?

My biggest joy has been being a Mom to her. Sammie loves to no end, always has a smile on her face, a contagious laugh and is always so happy. She doesn’t know hate. She doesn’t understand how cruel the world can be. Everyone is her friend. My other biggest joy has been watching her determination. She has such strength. Sammie is truly my hero and has taught me so much.

What has surprised you the most?

My biggest surprise has been finding strength I didn’t know I had. Physical, mental and emotional strength. Another surprise has been Sammie’s personality. She is always smiling and is always so happy. She doesn’t know that she is any different than anyone else because she’s not!! Yes, she does things differently but that makes her unique. Not different.

 

How well have you and your husband been at taking care of your own needs and health along the journey? Any lessons you would share?

I tend to always take a backseat when it comes to Sammie. She always comes first and always will. I try to take care of myself as best as I can because I have to stay healthy for her. I have to be able to do the things that she needs me to do. Her Dad and I are divorced so the majority of the care falls on me. I always say I don’t have time to get sick. Haha. . I try to take good care of myself because my daughter needs that. She deserves that. It’s important to take some time for yourself and that can be extremely difficult if you are the only parent or caretaker. It’s important for you and for them. When you’re stressed, exhausted, upset or angry about whatever, they can sense that. They know even if you try to hide it. You have to take care of yourself emotionally, physically and mentally. Your child depends on you and you can’t let them down.

 

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We’re currently working on creating a supportive network for the CP community. Kimberly, do you feel a community of other families impacted by CP would make you feel more supported? Why?

I do feel like that would make me feel supported. When you’re in a smaller community where they’re not as familiar with CP kids then it can be pretty rough. You often feel lonely, sometimes scared and confused. You’re dealing with all of this on your own and it would be nice to have people you could talk to that understand what you’re going through. Not just someone who read about it and suddenly, they’re an expert. It helps when you have people that have been there. People who know what you’re going through.

What would a community like that look like, ideally, to you?

I would love for it to be a community of support and acceptance. A community where we help one another. I don’t want anyone to feel as alone and terrified as I felt when Sammie was first diagnosed. I want that scared Mom to have that support and encouragement. I want someone to be there and let her know that it’s not the end of the world, it’s just the beginning of a beautiful new journey!!

What is your greatest hope or dream for Sammie?

I hope that people will accept her for the wonderful little girl that she is. I hope that she never feels left out or that she is not wanted. I want Sammie to always feel like she is just as good as everyone else. I want her to always know that she is loved more than anything. I want her to be able to achieve all that she can to the best of her ability and I want her to know that her Mom was there, cheering her on, every step of the way.

Do you have any advice for other parents raising children with CP?

Never give up hope!! You do not know what your child will achieve. It may take them years to achieve whatever goal you have set and that’s okay. It’s also okay if they never achieve it. They are still your child. Keep trying. Set new goals. It’s hard to not focus on the negative at times but please don’t. I always say it could be worse. Sammie is here every day and I am so fortunate for that. I can hug her, tell her I love her, see her smile, hear her laughter etc etc. You have to look at the positive things your child can do. I promise you this, somewhere out there is a parent wishing that their child could do what your child does, even if it’s something small. Be their voice. Be their advocate. Most of all, be their parent that loves and supports them to no end. You can’t give up hope. Ever.

If you could share a message with everyone, what is one thing you’d like the world to know about CP?

Kids (and adults) with CP are just like everyone else. They may do things differently but they still have feelings!! They still want to be accepted, loved, supported and encouraged……no matter the severity of the CP. You can’t catch it. You can, however, educate yourself about it. You can also educate others. When I talk to others about CP, I know I am at least planting a seed. It’s up to them what they do with that seed but at least I know it was planted.

Is there anything else you would like to share?

My daughter may not be society’s version of perfect but she is perfect to me.