Sunday, October 26, 2014


Over the past few years people have told me I am strong.

Not to question anyone's opinions, but once the house is tucked, covered in thick slumber I wonder.  Each and every parent I know would be just as "strong" for their kids if they needed to be.  What parent wouldn't move the world for their kids? How does merely doing what is best for my kids make me strong?  To me, it just makes me like any other parent out there.

Here's the thing, I'm not strong, I'm a mom, but I see strength each and every day.

 Cole is strong each time he gulps another syringe of the slticky white and pink meds he hates.  Cole is strong each day we walk into his infusion room.  Cole is strong as he asks the nurses for no needles yet he sticks his arm out knowing he needs them.  Cole is strong each time his sisters walk out the door for something he cannot be a part of.

My girls are also strong, both have defended friends who have been bullied and been themselves when it could have been easier to follow the crowd.  My girls are strong when even at 7 and 9, wise beyond their years, they can accept difficult sacrifices and understand certain things are better for Cole.

Each of my kids show me incredible strength, and for that, I am proud.  As a parent, I only wish for their strengths to continue to grow and thrive.  As for me, I'm merely surviving each day of parenthood with my husband, clawing our ways out of the bad days, cherishing each moment of sweetness, and being there for our kids each step of the way.  None of it makes us strong, it merely makes us parents trying to do the best we can for the three people we both love more than anything else in this world.

Wednesday, October 22, 2014

Letter to My Daughter


By definition to be babyish is to behave in an infantile way.  


When used as an adjective by one peer to describe another is piercing.

For the past day this word has festered in my head after one of my daughters was telling me why a few girls were suddenly not speaking to her.  She said they had called her babyish but really didn't understand why.  As a parent, there is a point when you cannot shelter your kids from the world, merely explain that there are times people say things they don't mean and there are times they might say things to be hurtful.  For a tween to figure out the difference, that's the challenge, just as it is for many adults.  

In the black and white world my daughter lives in there is right and wrong, fair and unfair, no in between, which let me tell you can be a challenge as she tries desperately to fit in and make friends.  In many ways I wish she could read Queen Bees and Wannabes and be able to look at the situations that may arise as she gets older with a different perspective, yet even now she refuses to believe that friends can really say things to be hurtful ever.  Even when it was clear from the horse's mouth the statement was uttered, she has refused to believe it.  It breaks my heart that my sensitive kiddo, the one always thinking of others will have such a difficult road to navigate as she approaches middle school, in addition to everything she worries about with her brother.  

All last night into today, this has been nagging at me.  I am sure there are other parents with other girls in our boat.  So here is my response in my journal to her.

Letter to My Daughter:

Dear __________,

Thank you for feeling you could come and talk to me about what has been bothering you.  I know sometimes it is hard to talk about something that is making you upset or sad and is very personal.  Growing up isn't always easy, and I wish I could keep you my little girl forever away from anything that would hurt you.  Know I am always here to listen and help you, even though I may not have the answers you are looking for.

Friendship is a beautiful gift between people.  Having friends you can have fun with is great, but what is even more precious is having friends who love you for who you are and will be there for you when you need them. These friends are sometimes hard to find, but when you do, you will know it.  These friends will not be mean to you or talk badly about you to other people, in fact, these people will stick up for you when you are not there because they are your friend.  Pretty cool, right?

What is hard about being young is that friendships can be confusing.  One minute you think someone is your friend and the next they have shared the secret you just told them, or they stop talking to you for no reason or when other people are around.  I know it doesn't make sense, but can I tell you something?  Almost every girl your age has gone through this, and as a mom watching, it stinks.  I remember going through this myself when I was younger, not that knowing that changes what you are feeling, but I can tell you it does get better and you know what?  I found some really amazing, true friends.

So what do you do now? 

First, be yourself and be proud of who you are.  If you still like the Little Mermaid, so what?  I am 36 and still LOVE Beauty and the Beast...there is nothing wrong with that!  You don't have to follow the crowd to be liked, in fact, the only person you need to like you is YOU.  Your dad and I will always love you, anything you choose to pursue, do for you alone, not because someone else thinks you should or wants you to.

Secondly, be a good friend.  I know you are, but be kind and treat others the way you want to be treated.  Be there for your friend all the time, but especially when they are sad, sick, or being bullied.  If someone is not kind to you, maybe they are not someone you should be friends with.  A friend cares about YOU.  Not what toys you have, but you as a person.  You should care about your friends.  Listening to you wanting to call or make pictures for your friends who are sick and sharing everything you have shows me you know how to be a good friend.  You have a huge heart and are very good at showing it!  I see it every day.

The most important thing I want you to realize is that you are a treasure.  Yes, YOU.  Your kindness and generosity surpass what I have seen in many people, you see the goodness in everything and are easy to forgive those who have hurt you.  The people you choose to be your forever friends will be very lucky to have found you, a diamond in the rough.  If they can't see past your shyness, your likes, the way your room is decorated, or what your dad and I think you are too young for (cell phones) then they are the ones losing.

In the end, you get to pick your friends and let me tell you, when you pick the good ones, having them around is the best thing in the world.  Sometimes it takes a little time to find them, but they are worth the wait and better than anything money can buy!  It isn't about having a lot of friends that counts, having a few true, real friends is all you need.

I love you honey. And like yesterday, if it is a tough day, I will listen, I will hug you, and will always be there for you.


PS: Don't grow up too fast, I wish I could be a kid again for a little bit...enjoy it! 

Friday, October 17, 2014

Deep Remission

So Cole has had his scope and yesterday we got the news that his biopsies show he is in DEEP REMISSION!

His gi doctors told us that we are doing a great job with him, which was something I needed to hear because there are many days that I have felt almost helpless, not being able to take this away.

While we are still waiting for some kind of news regarding what the next step with his immunodeficiency will be, we are so thankful for where we are right now.  There are still many limitations, but to see him, he is perfect, all of these diagnoses just seem unreal.

Two years ago, when faced with the choice of remicade or surgery for Cole, I feared for his future.  Never did I imagine after his hospitalizations and difficulty to thrive for so long that he would catch up to be right where he should be.  We are so grateful that our prayers have been answered and he is doing so well.

Until we have news from his immunological team we continue the remicade therapy every eight weeks and wait for the next step.  His gi physicians are continuing to reach out to other professionals, sharing Cole's story and discussing the latest research with early onset ibd and the best long term treatments.  So thankful for their diligence and constant support for Cole.  While they applaud us, without them,he would not be doing nearly as well as he is, which is truly all that matters.