A Week Without!

     A week without my Cora!  It should be a week to take a deep breath and relax just a little bit.  It should be my week to not worry about all things related to Congenital Heart Defects.  With Cora off enjoying her time at Heart Camp, I should enjoy the break!  Right?....WRONG!

     Instead I miss her terribly!  I find myself looking out at the swing set to see nothing.  That sweet little smile as she swings for hours, listening to her iPod has vanished.

     Now I know Heart Camp is only a week, but it started me pondering the what ifs.  What if my Cora wasn't around anymore? The hole in my soul would be constant.  What if our lives had to carry on without her?  I don't think I could bear it.  Sure she is a lot of work, but she is such a reward too.  Thoughts spiraling into sorrow.  Sorrow that I would even think about this.  Sorrow for CHD parents who have lost their sweet CHD child(ren).  I know I don't know exactly what you have gone through but my heart aches the same.  All those overwhelming moments during my day are missed just a little bit.

     Silly as it may sound, I find myself checking Facebook multiple times a day to see if any knew camp pictures have been posted. Just to see what her day has entailed, and to see if she may be in a picture or two.

     Each year she goes to camp is a reminder.  It reminds me that through all the hardships, crazy moments, ready to pull my hair out days, I love my Cora to pieces.  And I wouldn't change one thing about our journey together!

Blessings Until Next Time!

Drena 

4 Things I Learned Advocating For A CHD Childs IEP!--Part 2

    Even though my CHD daughter, Cora, has just finished 8th grade, I am still advocating for her.  In doing so it has required knowledge, patience, and a stern voice from myself.  So why share? Simply because our school journey has been a battle.  We have been through the school of hard knocks.  Many times I have been left wondering where and what do we do now!  I have learned some valuable lessons on advocating for a child with a heart defect. I have discovered along the way, that IEP's aren't really catered for special needs children with heart defects.  I have learned that educating teachers on Cora's obstacles is a necessity every year, and then throughout the year.

     I didn't have support when Cora began her schooling, not like the support available today!  I was one parent, unarmed, meeting with school board members, teachers, and the principal.  There was so much I didn't know, and felt like I didn't have much say in the direction of Cora's education.  As the years went on, I would attend these meetings with more and more knowledge.  However I wasn't ever listened to, or taken seriously.

      I recall one specific meeting when I was told, point blank, that they were the educators and I needed to let them do their jobs.  At that moment, I realized I was never going to be heard.  I was always going to be looked at as an over protective Mother.

  As Cora gets older class settings are constantly changing.  More classes, teachers, and responsibility.  For Cora it is stress, concern, and anxiety.  For me it is a time to put all my ducks in a row and begin educating all her teachers about her current IEP, and her additional diagnosis through Children's Hospital.  Is this easy?  Absolutely not!!  It is literally starting all over as if they don't know Cora.  It is spoon feeding information to the IEP teacher, as well as her individual teachers.  It is being patient yet stern at the same time.  It is listening to 6 teachers try to tell you they know your child better than you, and what will work best for her education.  IT IS EXAUSTING!

     That being said, I have found my footing during this very difficult and bumpy journey.  I have learned things that have helped Cora and the teachers connect.  I have learned that I have to speak loudly, patiently, and steadily.  I now have assistance from Children's who goes to the IEP meetings with me, and together we educate them and make them listen, for Cora's sake.

     So if you have a heart child in school, I have a few lessons I'd like to share that I've learned along the way.  Maybe one will assist you as you advocate for your school age heart child!

1. If you feel your child is struggling, speak up!  Make it a point to get with their teacher and express your concerns, and ask for an evaluation.  Be persistent, they may dismiss you at first.  The sooner the ball gets rolling, the better educational chance your CHD child will have.

2. All evaluations, diagnosis papers, special needs issued by doctors, need to be given to the school at least a month before school starts.  I have copies that I give to the Principal, the IEP teacher to be, and once I get Cora's schedule, I send copies, I've scanned, via email to each teacher.  The earlier they have her records to review, the better they will be prepared for your child for the new school year. 

3.  Stay in communication and continue to be a hands on parent all year! I communicate at least twice a week, with Cora's IEP teacher.  I also send a monthly email to each of her teachers. I do this for several reasons.  

      A. To keep the lines of communication open, always.

      B. Checking in on any changes in school work, and classroom behavior.  I also use this time to inform the teachers of any behavioral changes at home, or concerns Cora has brought to me.

4.   Don't be afraid to communicate if the IEP isn't working.  This past year we had multi meetings to make changes to Cora's IEP because, certain goals put in place just weren't working for her. I know I may have agrivated her IEP teacher, but it's my duty to make sure Cora doesn't grow  stagnant in her education.

I hope these little insights were helpful.  If you ever have any questions or concerns about your IEP don't be afraid, or embarrassed, like I was.  I'd be happy to help you in any way I can.

Blessings until next time!

The Angst Within!

    Countdown to Heart Camp!  For the last two months, the majority of Cora's conversations are about her excitement for Heart Camp!  As time draws near, her excitement is getting more difficult for her to control.  Other facets of her personality start to creep in.

     I have gotten use to reading her personality signs, and most of the time I can identify when things start to escalate in her little mind.  It is wonderful to see my Cora's excitement for summer camp.  Her excitement includes being with other heart kids that won't judge, to having a week to be with children who can relate to things other heart healthy children her age may not.  But along with that excitement, I start to see the angst in her eyes, and the tone of her voice change.

     I see her anxiety start to over rule her excitement, and her body posture begins to change.  Then....the what ifs begin.  What if I have that counselor from last year who yelled at me all the time, and said horrible things to me and my friends?  What if the heat is so bad Mom I can't breath well?  What if I collapse like the girl did last year?  What if it storms really bad?  That this point it becomes my job to take hold of the what ifs, and bring Cora back to the simple positives.

Once the focus has changed back to the fun of heart camp, and what it means to Cora, we are back on the excitement train!

     I believe, for Cora, Heart Camp is like her home away from home.  I believe she looks at heart camp as her place to be her raw self, and not be judged.  I believe, for her, it's a safe place to share things she goes through, that she doesn't even share with me.  I believe that without Heart Camp, their would be more sad days, followed by more anxious behavior, and depression.

     I wish I was powerful enough to wipe all the anxiousness from Cora.  I wish I could tell her that all those what ifs would never happen.  I wish I could make everyday Heart Camp for her, but I simply can't!  I can however give her one week to flourish!  One week where her spirit takes flight!  I can give her Heart Camp!  

     So thankful for Cincinnati Children's Hospital and the wonderful folks who put together this one magical week each year!  Our family, especially Cora, wouldn't be the same without this glorious Heart Camp!

Blessings Until Next Time!

Drena

That Little Nudge!

     While I was pregnant with Cora, learning of her Congenital Heart Defect, I made a decision!  I knew this baby would be my only.  I just couldn't live through another pregnancy with the possibility of having another CHD child.  I couldn't bear to bring another child, fighting so hard, into the world.  I was determined that no matter what, boy or girl, she was my one and only child!

     Fast forward in life, and guess what?  I began to feel God laying before me options.  Options to think about adding another child to our family.  I was very hardheaded and didn't want to listen to the suddle hints.  I recall declaring to my husband, God would have to shake me silly before I would ever bring another baby into the world. 

     It is so sad to look back at this me.  I was so frail and young in my faith.  I thought I made all my decisions and, my way was THE way. I truly believed everything rested in my hands.  My family, and the entire world rested on me to take care of everything!  I'm so grateful God didn't give up on me then.  I'm so grateful God continued to mold and educate me.  I'm most grateful that God taught me the importance of leaning on him!  

     So there I was, middle of the night, sleeping soundly.  Cora was a couple years old now, and I was a hot mess of a CHD Momma.  But, I leaned heavily on Jesus, and began my journey of prayer.  So out of nowhere I had a conversation with God in my sleep.  Honestly I listened without saying a word.  That was the first time God spoke to me, and.....I actually heard him.  I remember my eyes popping open, clock read after 2am, and I began shaking my hubby's arm.  I could the words escaping from my mouth, and that little part in mind was saying, huh, what, am I recalling correctly?  Did God really just speak to me and give me these vivid details?  By now I was sitting up and about ready to explode with information.  I preceded to tell my hubby what I was told.  Smiling I informed him, it was ok to grow our family.  Our baby would perfectly healthy, no heart issues at all, and.......it would be a girl!  Sure enough time passed and all the extensive tests were done, and guess what........our baby was heart healthy, and a girl.  All I could do was smile at my hubby and say "I told so!"

    To this day I hold that moment with God dear to me.  I would walk the world sharing my moment with God, to give people hope, to share that God does more than just exist.  God feels, God hears, and God loves us.  Oh yes, I still fight this mental demon!  My mind still stumbles and I begin thinking everything rests in my hands.  That I must carry everyone in my family, and be the strong pillar that has all the answers, and everything under control.  But my daily prayers, and Jesus' arms to guide and carry me at times, that demon would take up permanent residence in my mind!  I believe with all my being that God gives us that nudge when we need it, and if we are open enough, we will hear him!  Some of the smallest moments are God's greatest!

Blessings Until Next Time!

Drena