Living With Lily (And Cerebral Palsy)

7

 

cerebral palsy baby infant

photo by MOMMYTO5CUTIES

Lily and one of her brother's cars

I first learned that today was National Cerebral Palsy Awareness Day from MOMMYTO5CUTIES. She's mom to four boys—Alex, 7; Collin, 6; Nicholas, 5; Julian, 4, and Lily, 2. Lily was born prematurely and at seven months, she was diagnosed with cerebral palsy. MOMMYTO5CUTIES talks about life with Lily and dealing with her disability.

Tell me about Lily.
Lily is a happy and sweet little girl. She is always smiling and laughing and she is such a joy to be around. She loves to play with her brothers' cars and her lighted singing caterpillar, and she likes to play with her green bear—he goes everywhere she does. She likes to play peek-a-boo, and open and shut things.

 

How has cerebral palsy affected her?
Lily is affected in her entire body, but more significantly in her legs. She is very delayed in her speech, her fine and gross motor skills. She has poor balance and cannot stand unassisted and at two years old, she either crawls everywhere she goes or uses a walker for a short distances. She can sit in a "W" position but cannot sit unsupported in a chair.Every week, we have an appointment with at least one specialist, and
she is in therapy—speech, occupational, physical, and sensory—for more than 15 hours a week.

 

When did you learn that she had cerebral palsy?
Our pediatrician told us that Lily had cerebral palsy when she was 7 months old. We were very scared and upset—and worried for her future.

You had already been pregnant and given birth four other times, did you have any indication that something might be different this time?
At first the pregnancy was perfect like all the others and then at the end of the sixth month, I started bleeding and contracting and was put on bed rest. Later we learned that my placenta had partially erupted and my water broke at 29 weeks. They attempted to keep her in but after only two days in the hospital I got a fever and started contracting again so she was born by an emergency c-section.

What did it mean for Lily?
Lily spent two months in the NICU. She had many many tests—she had apnea of prematurity, high blood pressure, chronic lung disease, persistent tachycardia, and had a blood transfusion.

How did you cope?
It was very hard. All I wanted to do was be with Lily, but I had four other little ones who needed me. My hubby was working many, many hours a day so we could pay for the parking costs of visiting her every day. It was awful not to be able to take my baby home. Every time she developed a new issue, that meant she would be there even longer—it was miserable.We had family and friends who helped us out in many ways.

Did you talk to the boys about Lily?
Yes, they even went to see her in the NICU and they knew that she had to stay until she was bigger because she was too tiny to come home. They all kept asking when the hospital was going to give them their sister. They  love having a little sister and they have always been very good and helpful with her. They open the door so I can push her wheelchair through, and they bring her toys that she fusses for when they are out of her reach. They are very protective of her.

What kinds of things did you have to do to prepare your home?
When Lily came home everything had to be very clean and sterile because of her lung issues. She was on a apnea monitor, which would let us know if she stopped breathing. We didn't get much sleep at all the first eight months that she was home. Financially, it has been a ongoing struggle. She's needed many pieces of equipment (a wheelchair, etc.), and insurance has only covered a few. Everything for a special needs child is extremely expensive so we have had to learn to budget and cut corners where we can.

Having four kids you already knew around when a baby's milestones would come. How did you know what to expect with Lily?
Milestones for a preemie are always measured by their corrected age. Since Lily was two months early, when she was three months old, we could only expect her to be doing things that a one-month-old could do. But we knew that even for a preemie Lily was very behind. She is still over a year behind in almost all areas of development and in some areas, she's more than a year behind. Milestones come when they come and are a great joy to see.

What advice would you offer a mom whose baby has cerebral palsy?
Take your doctor's advice with a grain of salt and follow your mommy instincts. Doctors often scare parents of kids with cerebral palsy by giving them the worst case scenario, but with treatment and therapy, kids with cerebral palsy can do almost anything.
Cerebral palsy is life-changing for a family, but we have learned so much from the experience of having a child with a disability.

Are there any resources and support networks you recommend?
United Cerebral Palsy and Reaching for the Stars are both good sources of great information. Easer Seals also has information. If your child was premature, then the March of Dimes is a wonderful, supportive place. There are so many wonderful groups here on CafeMom like
Children with Special Needs; preemies, NICU, cerebral palsy, feeding tube, Autism, ADHD, reflux, Asth,a, heart, signing, brain injuries, speech, dev delays, RAD, and Moms Helping Moms with Special Needs Children.

What would you like other moms to know about children with cerebral palsy?
I would like them to know that children with cerebral palsy are some of the smartest, sweetest, and most determined kids that you will ever get the pleasure to meet. They endure more in one day then most of us will in our entire life and do it with a smile. They are strong and they are fighters.

 

What can people do to help?
You can help spread awareness by learning the facts about cerebral palsy and educating others. You can also help by donating to United Cerebral Palsy, Reaching for the Stars, and the March of Dimes.

 

What are your hopes for Lily's future?
My hope for Lily is that she will continue to grow and learn and never let cerebral palsy stop her. And that one day she will go to college, get a great job, and have a family of her own.

Do you have a child with cerebral palsy? What do you want people to know?

health