Wednesday, October 21, 2015

Seven Days

After 3.5 years of remission - it took 7 days for a full blown flare.  Seven Days.

I am not going to go into what a full blown flare looks like again.  If you are having trouble remembering or you are new to HWHAP - you can read: The Sh*t that is Crohn's Disease here! I don't mince words in that post.

Last Monday, the 12th was her Remicade appointment date but we found out the Friday beforehand that there was a lapse in her coverage and we were having trouble getting answers.  There were words like:  pre-existing condition, pre-authorization and you need to call financial services but ultimately they canceled her appointment and would not allow us to cash pay.  I was frustrated but not OVERLY concerned. #Mistake

I honestly had no idea she would get this sick so fast.  After 3.5 years you forget. You forget how completely awful it is.  It is so awful! I was even brazen enough to allow myself to believe that she would be ok.  Maybe she doesn't even need Remicade anymore!  Maybe, just maybe she can stay in remission without it!  Her doctor has told me countless times that they do NOT take children off of biologics - it just does not happen.  Why would I allow myself to think Sophie would be the exception? I don't know why.  I just know that it is hard, hard to know that your child will need this for the REST OF HER LIFE. It hit pretty hard. Again.  Which seems ridiculous but this disease is ridiculous so I think it is only fair that my emotions can be ridiculous too!

I left Sophie for a few minutes this morning to run to the gift shop and cafeteria.  While in the gift shop my emotions got the better of me and tears started flowing. Being here is hard. Coming through the ER was so hard.  We were in the same room that we had when Nate was diagnosed.  Being back on the GI floor brought back so many feelings.  Just ALL OF IT is hard.  Another mom came up to me and asked if she could hug me.  Not is a creepy, stalker way! She had tears too.  The mom bond is strong.  Being the mom of a chronically ill child somehow, if possible, makes the bond even stronger.   I didn't even get her name, or her story, but I could see the sadness in her eyes too. We are same same.

And now here we site in her comfy suite at Children's Medical Center Dallas overlooking downtown, an IV in her arm -- she is receiving the Remicade that was previously denied and we are hoping this kick starts her little body right back into remission.  She wants to go home and although her doctors wanted to observe her for one more night, they are granting her wish and letting her go home tonight! As long as everything goes well, of course.  She will miss school for the rest of the week as she rests and allows her body to recover.

2.5 years of hell was forgotten in the 3.5 years of remission but it only took 7 days to bring it all back and now I am hoping 7 days to get her back into the remission bubble.  It may take mommy a little longer to forget and will certainly take a while for the guilt to go away.   This sweet girl pays the price when things go wrong, when balls are dropped, and denials are made.  It hurts every fiber of my being to see her suffer.

This girl though is fierce, she is a fighter, a warrior and she will warrior on.
I am so honored to be this warrior's mom.  #SuperSweetSophie #CrohnsFighter #WarriorOnLittleOne

Thank you all for your calls, texts, and messages!  Thank you also for always allowing me to come here when times are tough.  When things are good I easily forget what comfort I find here, it is nice to always be able to come back when it is needed.

Wednesday, June 3, 2015

Sink or Swim, Emma Leigh

Tomorrow my 1st born child will leave elementary school for the last time.  It is her last day of 5th grade!  She is growing up so fast.  I remember when she was a baby and people would tell me that it goes by in the blink of an eye --- I honestly did not understand what they meant.  Now I do.  How did my baby become 11?  How is it that this precious little one can be leaving elementary school going in to .... ... middle school?

The year that Emma entered kinder was the year that Nate was diagnosed with Type One Diabetes.  We were about a month into the year and Emma was struggling with kinder.  It was a big school, a big class and I felt like Emma was getting lost in the shuffle.  We had just started exploring private schools when Nate was diagnosed.  Emma and her school problems quickly got placed on the back burner and stayed there for a while.  My entire world had fallen apart.  I was barely able to manage so it seemed at the time.  I felt like we left her there and she was going to sink or swim --- there was nothing I could do for her at the time.  Luckily, she swam.  She's a swimmer.  I love that about her!  We ended up adoring her school and she thrived there!

A few years later, Jim and I divorced and I left our home and the only school she had known to start our new life.  Not only was Emma forced to leave her beloved school but all of her sweet, sweet friends also.  Starting a new school in the middle of 3rd grade wasn't easy for her.  She missed her friends and everything was so different at her new school.  She struggled.  This time I tried to help but ultimately it was Emma that pulled herself up and swam again.  She's made lovely new friends and is such an excellent student.  She is so strong, so brave and so intelligent.  Her inner beauty just shines through so brightly. I could not be more proud of the young lady she has become.

So, bare with me tomorrow  . . .  I know I will fall apart when she walks those hallways for the last time.  The Mommy in me is absolutely terrified that middle school is going to eat her alive but I should know better.  My girl is a swimmer.  She will find her way.  I will help her when and if I can but I know she has the tools, strength and knowledge to handle herself with kindness and grace.  She will be fine.  She will be more than fine --- she will be great.

She made me a mommy --- she made me heart whole.  I love her so much!

Hopefully, tomorrow I will have an update on how the day went and post some pictures on her very last day in elementary school.  Pass the tissues, please!!!

Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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