Our first visit with the neurologist was very informative and over 3 hours long. A few months prior, I saw a news story about a neurologist in the area with cerebral palsy herself. I remember thinking, if we need to, we need to go see her. Who better to guide us and know what our needs might be? Flash forward, and it turns out her office is 10 minutes away… so there we were being told our daughter has cerebral palsy. It wasn’t really a huge shock, since we always knew it was a possibility, but I still didn’t want to hear it. I didn’t want to hear that things, that life, wouldn’t be as easy for her as it is for her identical twin sister. Deep down, I wanted them to be ‘identical’ and this diagnosis takes that away from us. When you tell people you have identical twins, they always talk about how they will grow up to trick us or others with their identical-ness. I just smile but I know that probably won’t be an experience we will have to worry about.  Then again, you never know.

The doctor gave us so much information about treatments and options and how to give her the best opportunity to walk one day. There were medication options, which I didn’t like, there was going to be medical equipment to assist her with standing and walking, braces for her feet to give her more support and there was therapy: physical therapy, occupational therapy, speech therapy and others. Some therapy insurance covers, others are considered experimental and would be all out of pocket. But when it comes to providing your child with the strength and skills she needs to be ambulatory, it all seems worthwhile. How can you say no to something that could be the difference between your child attaining skills they might not attain otherwise? So you find a way to afford it, maybe you can pay out of your bank account or maybe you put it on a credit card and try not to worry about where the money will come from. There was even a possible surgery that she could be a candidate for down the road. I began reading as much as I could and joined a couple of groups on FaceBook with other parents of children with cerebral palsy. I began learning as much as I could about our possible future.

The truth is, her future is bright. I prayed since the day we were told the news in the hospital that if she were to have any issues as a result of the PVL that they be purely physical and that she would be smart, kind, loving, funny, and beautiful inside and out! We have been lucky and blessed! As far as her health, she is healthy and strong. She gets funnier day by day, from telling us she needs to call Teacher Harriett (from Daniel Tiger’s Neighborhood) to tell her that she is MAD, to learning and repeating one of Grandma’s favorite phrases ‘Oh my God’. She is smart, she knows most of her letters, has wonderful manners and loves to tell us a story about this one time when she was a little girl.

 

 

I know that is not the best quality, but I just had to get video of her little voice. Sometimes at night when I am putting them to bed, I will record them when they are being silly and my phone has all of these random blacked out videos! She cracks us up all of the time. I am so grateful that we have two wonderful and kind little girls even if it comes with this diagnosis.

Liv is such a great helper, the other day I asked her to get her sister’s braces for me, to which she replied:

Absolutely!

I just thought that was so adorable! They take care of each other and have has to share since the womb, so when I ask Ava what she wants she may reply with:

Well, what does Livi want?

If we are watching a show and one wants Daniel Tiger and the other wants Mickey Mouse, they know we can take turns and watch one and then the other, although deciding which goes first can be a little more difficult at times.

The other day we walked out to check the mail with Ava in her stander and me pushing. She wanted Livi to hold her hand, it was so cute, I wish I could have gotten a video. At one point Livi tripped and Ava said,

Are you ok, Livi? Livi, are you ok?

They are genuinely concerned about others’ well being and it warms my heart.