Guest Blogger: Beautiful Side of Hectic

I asked my friend Cheryl to be the first guest blogger and share her experience with Cerebral Palsy. Enjoy her story and make sure to visit her blog Beautiful Side of Hectic.

Um, Hello?? Is this thing on? Oh yes! You sir, in the back! Please sit down and I'll try not to bore you too much! I suppose I should state the obvious...If you're looking for Ellen, she's in a closet wondering just WHAT exactly I'm going to talk about. It's ok. I gave her cookies and water, she's all set.
My name is Cheryl and I blog at http://www.beautifulsideofhectic.com/. I enjoy long walks on the beach, candle lit dinners and... Oh. THAT introduction is not going to work here. I will be celebrating the first anniversary of my 29th birthday in May. I have a wonderful husband, Adam who has put up with me for 10 years and married for 5, although, I do see a lot more grey hair popping up, I'd like to blame that on the kids. Speaking of kids, I have 2. They are mostly cute, usually when they're sleeping, unless they're talking in their sleep.Lauren is my "typically developing" child who is 4 (although, sometimes Adam and I wonder if the right child was diagnosed. ;)). My other daughter, Jillian is 2.5 and as a result of a premature birth, Jillian has Spastic diplegia Cerebral Palsy.We also live happily ever after with our cat, Timbit.

Jillian was born on a warm, sunny September morning, 10 weeks early. She had a pretty decent NICU stay, mostly there to eat and grow. After 5 weeks in the NICU, we took Jillian home. Being 10 weeks early, we had to take into consideration that since she's not supposed to be BORN yet, she'll start making milestones a little later then "typically developing" children. Nothing really struck me as delayed until she was 6 months old. She wasn't really babbling, not attempting to crawl/sit/etc. and had some severe oral aversions in regards to eating solid foods.I brought this up with her pediatrician and he advised we would keep an eye on it. When Jillian passed her 6 month corrected birthday, it was evident she was behind. Thus began our completely insane schedule.

We started with the basics, PT/OT/early intervention. When Jillian was STILL not meeting milestones, her doctor ordered a sedated MRI. Jillian went through that procedure quite well and we didn't hear the results until October 22 of 2009. I was taking Jillian to a routine appointment (ironically to plot her development on a graph) when the doctor announced he had Jillian's MRI reports back and she was diagnosed with Spastic Diplegia CP. I guess I was a little shocked, even though this would be a REASON why Jillian was behind.The doctor then told me it was ok to grieve. I thought "what?! Grieve?! We still have 2 living children!" It wasn't until about 4-6 weeks later that I understood what he said.

The shock has warn off and now I'm finding myself researching a LOT about CP. I firmly believe that knowledge is power and I needed to submerge myself in knowledge. The only bad thing that annoys me a little bit is the wait and see attitude. I do appreciate it, but sometimes I find it frustrating that we don't have anything set in stone like when Jillian will take unassisted steps.

So, there's my life in a nutshell. As much as I feel like CP doesn't define Jillian or I, it's a huge key in our lives, in our families lives. Honestly, Jillian has taught me SO much about myself. Who knew there was so much strength, determination and love inside of me?

We Need a New R Word

This is a short clip, about 30 seconds long, but it has a very powerful message. I have 2 daughters who are hurt and diminished by the word "retarded." But what they really need, is...



Today is spread the word to end the word day. So spread the word!

Cerebral Palsy Awareness Month

Are you ready to learn with me? March is Cerebral Palsy Awareness month, and it just so happens that right now I am "hungry" to learn about all I can about this condition that is part of who my daughter is. Nina came to us with many challenges, and in order to overcome those that come from her Cerebral Palsy, I am trying to learn all that I can.

So, in the next few months stay tuned as I share about choosing to adopt a child with Cerebral Palsy, living with Cerebral Palsy (from the mom's perspective) and I might even have some new friends share a little of their story right here!

And finally, just like I have invited people to ask any questions they have about Down syndrome and Nichole during Down syndrome awareness month, I am inviting you to ask any questions you have about Nina or Cerebral Palsy. If I don't know, I will find out!

8 Years!!!

"Come and grow old with me, the best is yet to be"

Eight years ago, I walked down the aisle holding on tight to my dad's arm and trying to control my trembling lip. At the front of the church, Andy waited for me. He was so handsome. I loved him, loved him more than I thought was possible.

Eight years and that love has grown as we have done life together.

I am honored that he chose me, and I cannot wait as we share the rest of our lives together.

Turning 30

Today is my 30th birthday, or like my friend Julie suggested, the first anniversary of my 29th birthday.

Somehow, it seems like a monumental age. I always thought of 30 as an age where you look back and look at all the great accomplishments you have achieved in your life, and all the ways in which you have made a difference.

I know in the eyes of the world maybe I have not accomplished much. Quite honestly, many times I feel that way myself. I have piles of dishes, piles of laundry, and endless meals to prepare. I am a cook, a maid, and a chauffeur. I wipe runny noses, play Barbies, and watch cartoons. I don't even get to shower everyday. And sometimes, when I get together with friends, we talk about the dishes, the laundry, and the kids. In the midst of all of that, I try to keep the spark in my marriage because I love my husband and want our girls to see what love looks like.

I never pictured myself here, where I am, at age 30. I pictured something glamorous, something romantic, maybe something that people would point at and say, "Ah, she got it!" I don't have that, not even close. What I have, is a life that has been offered to God, for Him to take and use as He wants. I have been broken, worked on, and changed. It has been an adventure, and although there have been storms and hard times, I think my 30 years have been beautiful.

I am married to a man that I still cannot believe chose me. He holds my heart, and I am lucky to have him. We try hard to make our marriage a priority and I am so thankful for that.

I have 3 beautiful girls. Ellie is everything I ever dreamed of, she is so full of life, and I am proud of her, so proud of my little girl. Nichole came to me and challenged the things I held as meaningful in life. Her extra chromosome had been an incredible blessing, she is my teacher of life. Nina has been a fiery furnace, and how God has used this little girl in my heart. What an incredible journey she has brought me through, and how lucky I am to have her.

I am 30 years old. Wanting to live a life that honors God, with everything I do, and with all that I am. And I am excited, excited to see what else in store God has for me.

(Yep, this is me when I was 4 years old)

Periorbital Cellulitis

Wednesday morning Nichole woke up with a puffy eye. I was not too worried about it and gave her some benadryl. By nap time, I felt her eye had not improved and she seemed crabby. I woke her up from her nap and to my surprise her eye seemed much worse.

Thankfully, we have an incredible optometrist that was willing to look at Nichole's eye. He made sure she was tracking well, put some dye in her eyes and checked with a black light to make sure there were no scratches that would make her actual eye get infected.

He advised fro us to take Nichole to the doctor the following day and that she would need some stronger antibiotics to get to that infection before it became something more serious.

The thing is, Nichole has been taking antibiotics for the last 2 weeks. Amoxicilin and Zithromax did not help, and because Nichole has Down syndrome, her inside "tubing" is a lot smaller, so little colds can become big colds. A bad sinus infection, can get nasty. And for Nichole in particular, any cold means it will affect her eyes to some degree. Just never like this before, and this also did not seem to be her worse cold or sinus infection she has had. Really, we thought this wasn't too bad.

Thursday morning we went to see the doctor and sure enough, Nichole was on her third round of antibiotics, some pretty powerful stuff.

But then I woke her up from her nap and I could see blood in her eye. I rushed to the doctor with Nichole. Our doctor called an ophtalmologist who said to go to the ER where he would check Nichole. This doctor met us as the ER desk. As soon as he saw Nichole's eye and took a look at her he confirmed our fears. She has Periorbital Cellulitis, and in the hospital we will stay for a couple of days.

She is getting antibiotics via IV for 48 hours.

The good news is, we got her in right in time before it got worse, and they have drawn blood to see that the infection is not spreading and this seems to be working. She is being such a trooper. Hates the IV but has resigned herself and is letting it be. She is loving watching her shows and playing with the iPad all day.

On the home front, Ellie woke up with a fever. So we have a sick girl at home and one sick girl in the hospital. This same virus has been punching our family for a while. Last weekend I was sick and I had a fever for about 3 days. We have not been able to make it to church for 3 weeks! I don't see us coming this week either (Sunday is my 30th birthday!) I know this year has been hard for a lot of families, lots of people sick. So I have to say that I agree with the many who say, "I cannot wait for Spring!" We will forget that spring also means allergies, because for now, Spring means fresh air and less sharing of germs!

She is Not a Baby, Treat Her Like a Big Girl

About a month ago I posted about the challenges we face with Nina and her Cerebral Palsy. From our experience with Down syndrome, I know that parents are the experts.So in that post, I was "Calling all Cerebral Palsy moms"...and they responded.

Learning from other moms that walk the same road we walk is so helpful! Let me say it again, it is so helpful! They get it, they have been there, they know what it is like. The most helpful part I believe, is that right now I am a sponge and I am so ready to learn and listen to what these mom's have to say. I have been challenged in many ways and I have put some of their advice into practice.

My new friend Cary blogs at "About the Small Stuff." She has taken the time to e-mail back and forth with me as I ask questions. She has challenged me! Her son, Ben, has Cerebral Palsy (same type as Nina) and I have learned from their journey.

I came to realize, that I was treating Nina like a baby in the places where her disability is obvious. Carrying Nina is our normal, but it can become a bad habit that hinders her from becoming independent.

Nina's Cerebral palsy affects her mobility the most, and I have been so frustrated by her lack of desire to walk, that I never realized that I was treating her like a baby in the very area we struggle with! So if she needed to go potty, I was picking her up and carrying her to the toilet.

Not anymore. Success is found in the small things, one step at a time.  Now when she tells me she has to go potty,  I simply tell her to go. All I do is make sure that the toilet insert is on, but I expect her to do the rest. Kids her age do it, and so will she. It takes her a really long time. Her potty trips average 15 minutes, but that is okay, she is so proud of herself. If we go somewhere, I expect her to walk for as long as she can while she holds my hand or uses her walker. She actually has come to prefer holding on.

This new way has made life easier for me, less demanding physically. On the other hand,  it has made it more challenging and physically demanding for Nina, she is being pushed.And while there are times where we have to help her, those are amazingly fewer that I thought.

And the results from this change?

Nina said today, while she was taking off her shoes and braces, all by herself, "Mom, I wish I could walk. I want to walk"

Her words touch my heart and bring me to tears. That statement right there, speaks so much more than the actual words. She wants it, she really wants it!