Caller ID can paralyze me

What an interesting week-

I took Kearstyn to Secret Keeper. It was a girls night. We went out to dinner and then went to listen to a speaker. The main idea was to teacher girls about modesty and beauty in the eyes of God. At one point the speaker told us moms to turn to our daughters and ask them what they struggle with. I felt so connected to her, looked in her eyes, was super excited to pray with her. I asked what she struggled with and her  reply was "what does struggle mean"? Then she proceeds to tell me she wishes we had a tv as big as the screen at the church in our home.....After a short intervention (teacher friends should be laughing), she was back on track and ready to roll...

Later that night I joined many other runners at the Stadium to run for Boston. It was amazing how united with the community I felt. Hard to explain!

We had Kylie's IEP meeting. It was tough as expected and unfortunately we didn't complete it. I do feel blessed with a few of the individuals that are so invested in Kylie. I just wish I could have sat and talked with them longer. I did have to take a break. Corey is great, we walked outside had a quick chat, and I was ready to return to the meeting. One of the teachers did not say 1 positive thing about her. How do you have a conference about a child and not say one positive thing? I could feel a lump in my throat as I waited...but that moment never came. Thankfully there were others who I know love her so I have been trying to focus on the positive.

Right after that we had to head to Cleveland for a doctor's apt. Stryker and Kylie did pretty well but both were hungry by the time we left. Getting lost in downtown Cleveland didn't help. Why is it men will not ask for directions? We have to adjust one of her medications, but hopefully it will help her with her nervousness. She has been really struggling with transitions lately. She hasn't wanted Corey or I to leave the house. We try to schedule date nights and she used to shove us out the door, not anymore. It make leaving a little more difficult.

Friday my phone buzzed and I looked down. It is amazing how caller ID can stop you in your tracks. I knew the number, I know it well. I am sure we all have those numbers we don't like popping up and numbers we can't wait to see. We have numbers we try to avoid and numbers we feel the need to answer. It is human nature, but when the hospital calls, it stops me in my tracks. So after and IEP meeting, doctors appointment, crazy late evening with carebear, trying to plan for the addition, craziness with the Boston Marathon, work business, this call was the LAST thing I wanted.

It was another doctor's office stating they really think we need to start Kylie on this medicine we have been avoiding due to side effects. More lab results were read to me on the phone. I wish I would have let it go to voicemail. Maybe just not knowing over the weekend would have been ok. I cuddled with Kylie and Strkyer this afternoon. Her muscles ache today and she just wanted them rubbed. She finally fell asleep and I just found myself staring at her for an hour. Decisions are so tough. I feel like the weight of the world is on me to make the right decisions for her as far as supporting her health needs and I just don't know which way to go. I will explain more later. This post is getting long and I can feel the lump in my throat return and my heart beating fast just thinking about it. Corey and I seem to talk in circles about the pros and cons of the medicine. I am just glad we continue to talk about our options. We have this weird trust and respect for each other so we just keep banking on the other one to make the "final call". It is one of those times neither of us want to make what could be a fatal mistake. I do think though we will both know when we need to move forward with the medicine, at least I hope so. I know I sound confusing........it is because I am confused :)

My first marathon is next weekend. I had my last longer run at 8 miles today with Julie, Andrea, Sarah, and Stephanie. That actually seems really short to me after three 20 milers! They have so much confidence in me and I hope my confidence builds after next weekend. I am pretty nervous right now. Running is so freeing and it is something positive I can focus on. I hope to start a team for Kylie this summer too! I have talked to a few friends about it and one person said she would be honored to wear a shirt and sponsor her. It made me really happy. I just need to think of an awesome team name! Ideas are welcome!

I had somebody text me this week saying it sounded like things were busy.........I am not sure what I would do if they weren't. Each story, each of my awesome children, each moment is an experience crafting me as a mother, wife, and friend.

Corey's parents just came. His dad is awesome at holding me accountable because he hates when I answer my phone or text when they are visiting. So I will now log off, put my phone away, and enjoy my amazing family.

Caller ID won't paralyze me tonight

I sat last night with grown men around my table planning and preparing for Kylie's future in our home. They weren't here because they had to be, they didn't design a plan because they had to. They are invested in her because they care. There are a lot of things Kylie struggles with, but that kid knows when she is truly loved. She smiled shyly as she hugged them and talked with them. I couldn't hold back the tears as we shared our journey with these men. They took the time to hear us. It wasn't a passing in the hall of "how are you"  "I am thinking of you". It was an effort just to be here, to be present, to open their hearts to our family. It was amazing. I could feel their compassion and support  for not only Kylie, but all my wonderful children and my marriage. The timing was perfect. After a draining day, I felt at peace.

We are all on this journey called "life" and it is amazing how your sense of peace can be so quickly shaken if you allow it to take over. It is IEP time for Kylie. I wonder how many hands the document went through before it got to me. Information being passed around about my child. Should we phrase it this way or that way.... I know those conversations all too well. Make sure you slide a "strength" in there. I got the infamous (what do you want for your child? What are your concerns?) paper home. Corey and I sat for a while, the formality of it all was frustrating. What should we write? We don't want her to call Grandma everyday and ask her to sing happy birthday because it really isn't? Fyi-Grandma sings to her everytime she requests it. Or when we ask her how old she is and her answer is 6, we sure wish she understood what that meant.  Can you please keep her safe? Can you love her fully? Can you appreciate her beauty for all it is? Do you have any suggestions because many mornings showers hurt her skin and she screams in pain?  Do you have suggestions for that? What does a parent write? We don't want to see her suffer? Oh and if you could coordinate with the doctors, the medicine, the bullying that would sure be helpful too? How about some more strategies for her being able to get dressed herself, open the toothpaste, brush her own teeth, sleep all night, eat a freaking fruit roll up without choking! Don't get me wrong, the school should ask a parent these questions...it is a wonderful fabulous thing, we just weren't sure how to respond.  I was one of those who needed the wording just right. See if the wording was just right then that meant all would be well prepared for Kylie and I assumed the world would follow this magical plan we had perfectly placed on paper. Not the case at all.

It is interesting my reaction this year. This is it, the year where they mark "alternate assessment". For those of you who don't realize, this is a small percentage of students who are significantly delayed and therefore must take an "alternate test" as mandated by the state.  You would think I just found out my kid was handicapped or something. I knew this day was coming, I know what it is and somehow it still stings, tugging at my heart.

I told myself not to blog tonight, not while the wound felt so deep, but in a way that is the point of the blog. I have many friends in my contacts that know and understand my words to the their core and there are others who are getting a first time glimpse of what is like to have a child with a disability. Either way, I hope to teach you something you may not have considered before and for my friends who know this world all to well...........remember you are not alone.

Weekend thoughts: Excited for my Saturday morning run with my girls! Blessed to be able to hang out with some students this week, I do miss the students in schools.I also had the opportunity to work with some amazing teachers and administrators this week. Lastly, I have some wonderful peers I work with everyday at my office and some pretty special gal pals too :) Thanks for riding the coaster with me :)

Ooh and a few more things.......My 10 year old keeps poking me saying "big belly", my 6 year old has decided she would like a tattoo because they are pretty, my 3 year old loves to tinkle outside, and my 17th month old thinks it is cool to throw things in the toilet.  Free entertainment at the Kandels :)

Sweet Sundays
 
I think Sundays are bittersweet. I love the family time but as the weekend comes to a close, there is a peace in knowing I will be back to a routine at work. Yesterday morning at 5:30 I fell out of bed, managed to drive in town to run my last twenty miles. I arrived at the stadium to meet a friend, looked at her and expressed how exhausted I felt. She was tired too. I got back in my car and drove home and fell back into bed.........not running as I had planned. I did end up getting my twenty miles in, 11 with Steph and 9 by myself. It is exciting and scary to know the marathon date is almost here.
I get asked often why I run, what motivation I have. It is freeing. I admit it is painful, but I feel such a sense of accomplishment when I am done that I almost crave that time.

Cayden is doing well. He has had two seizures now. Both as a result of a fever. The problem is the temps come on so fast, it is hard to prepare. The first time he had one he was in Corey's truck. They had just left the doctor office and they were on the way to the pharmacy. This past one he was at my mother in laws with Kearstyn. Kearstyn was tramatized because she saw it and the poor lil guy had to ride in the squad by himself. I was really proud of my mom in law and Kearstyn! While he was in distress, I was at Samaritan having my own tests done. Corey and I have this code that he is never to say "call me now" unless it is an emergency. So he called a few times and then text call me, which I was ignoring because I was with the technician, but then as I was walking out of the Ashland Hospital and I looked down on my phone I saw it........CALL ME NOW. I can't describe the feeling, it is the the worst feeling ever. We had to establish this code after my dad died because he was the one that came to get me when my he died and there was something in his voice. I can't really explain it. Then when Kylie was born and he would call when she was sick or rushed to the hospital. It isn't the best feeling to fear a call from your own husband but that is what our life is. Everytime he is calling to ask what time I will be home or what to ask what is for supper...........I am thankful. The seizures thankfully are a result of a fever but you forget how much it impacts simple things.......like taking a bath. I now plan on sitting in the bathroom with a cup of coffee while Cayden splashes around........just in case.

Sweet Sunday Thoughts:

The phone rang this morning and it was my mom. She offered to watch Kylie during the church hour, which was so helpful. Corey and I have been rotating our attendance because there isn't support for Ky during that time. We were pretty excited to be able to attend together. I think it was the perfect Sunday too because the sermon was about prayer and it fostered some great conversation after church. Also today Jen and I had a chance to visit for a while.

It was beautiful today so I decided to get five miles in after my walk with the girls and Megan/Owen. Sounded like a great idea but it was super windy. Kind of hard ot catch my breath but then it would stop and I could recover for a bit......I have to chuckle, kind of like my life (beautiful and windy).

P.S. I received the letter........I am healthy :) WOOHOO!!!!

Prayers for Kylie today: She is still needing some breathing treatments. Kearstyn massaged her muscles yesterday for 30 minutes. There is an amazing bond between sister and my eyes filled up with tears as I watched her talk to her and watched Kylie focused on her words..she was still...she was calm.

Kandel Blog Day 1

April 5, 2013
  Well this is my first attempt to blog about anything. I am not even sure what I am doing.

So whats the reason for this blog? I figured it could be free therapy, maybe entertainment for you. If you have somehow stumbled upon this page be prepared for anything. This is my place and I welcome you on our journey, but it is a place where I will be honest and true about my journey as a wife and mother. If you are one of those type A personalities........be prepared because I don't even think I will hit spell check. Being type A myself........this will actually be a challenge!

I keep being told I don't put enough detail on facebook, just hospital visit here, bla bla bla so I guess this is also a place to keep a timeline and updates about not only Kylie, but all of my family.

As you know, I love to talk..........but I think this is (almost) enough for the first post.......and I only say that because I am not sure it will even post :)

Friday thoughts: I have my last twenty mile run before my marathon in a few weeks and thinking about the race makes me want to vomit.......out of fear.

I let my phone go to voicemail twice while I was staring at it....this is an accomplishment for me. My time was better spent reading a story to my child. Embracing that quiet and quality time is something I am working on. Stillness............

Kylie got to visit with the Kish family today which was a plus. Negative: She is 10 years old and can't eat a gogurt by herself........it really makes her mad!

Kearstyn: She said today she is excited to go back to school. I am glad she loves her teacher and friends!

Cayden: They boy knows to put his tag in the back while putting on his pants, but everyday he does it and comes to me dressed........I act like it is the first time he ever did it and I continue to celebrate and praise his independence. I have realized as an adult, we also seek others to acknowledge our successess......just like a three year old :).

Colby: There is nothing like the sound of a babe saying momma in the morning from his crib because you are the one he wants to see! Okay I am not that dumb, I realize I am his way out of the crib and to freedom. Let me live in my  happy bubble :)

Corey: I drove by where he was working today, he looked as gorgeous as the day I married him, my heart smiled.

Have a great weekend!