Sister Bond!

     I share a lot about what Cora goes through daily being a child with a complex congenital heart defect.  However I haven't spoke much about how it effects her siblings.  They live with a sister who bears a lot of difficulty, but to them this is all they know. 

     It must be difficult to be a child who sees her older sibling receive so much attention.  To be on the end of wondering if Mom will have time for me, or when will I ever get alone time with my folks?  It must be frustrating to bear the stress burden pushed off onto them accidentally.  Days when I'm at my whits end, I know I'm short fused and expect more out them.  For that I feel terrible.  As a Momma who love her children dearly, I never want my children to bear my burdens, my stress, my disappointment.  Unfortunately being an imperfect person, brings the inevitable truth that I expect more help and understanding some days from them.  I am saddened to see the disappointment upon Cora's sister's faces when I fail in this department.

     

     I recall one time, my middle daughter verbally wishing she had something wrong with her.  I stopped instantly in my tracks, mouth open and asked why she's ever wish such a thing.  Her answer broke my heart!  She felt that if she had a heart defect, I'd have to make time to take her to the doctor and she would then finally get alone time with me.   HUGE wake up call for me!  Moving rapidly through my days and nights, thinking I have found a system of juggling it all, was an illusion. Reality is I haven't found a system to nurture the special one on one time with Cora's sister's.  

     Through the rough patches my girls amaze me.  They are there to help Cora and me, most of time acting selflessly.  They are the little reminders for Cora.  The little nurses when we need extra hands, or just a few minutes break.  They become teachers at just the right moments.  They encourage when moments of keeping up with the crowd occurs.  They share a bond as siblings that make me cry.  As much as they disagree, and fight like sisters do.  They also have a bond that will stand the test of time.  Cora's siblings will help hold her up when she can't hold herself up.  They have been her "pick me up" when darkness has set in, and they have unconditionally loved a CHD sibling, as if she was perfectly healthy!  That my dear friends, is a SIBLING BOND only God can create!  Finding a balance will continue to be a work in progress for me.  But seeing Cora's siblings demonstrate patients and understanding so often, just astonishes me.  And that reason alone, I remember to give praise and honor even during the moments I'm ready to have a breakdown!

Blessings Until Next Time!

Drena

      

What If?

     When I sit and talk with folks, sharing information about CHD, I always make a point to share a little bit about our families journey.  I go through the list of Cora's diagnosis and answer any questions I can.  I am pretty versed in her multiple diagnosis'.  So much that most of the time I ramble them off not thinking!

     I recently was on Pinterest and read something that made my mouth jaw drop!  I read it again and gasped.  As I let the words sink into my head, a realization within occurred! A light bulb went off, and then the guilt began to creep in.

     Over the years there has been so many complex diagnosis' for Cora.  Each one stemming from another.  All coming together pointing to her original diagnosis....a congenital heart defect.  As time has passed I have noticed changes that many probably don't.  I have gotten so use to tallying them up to a side effect from a diagnosis, I just note it and move on.  But maybe I have been to quick to make those calls. For many I'm sure it appears that Cora over analyzes some situations.  Double, sometimes triple checking things.  Going down the check lists, mentally marking them off with each question she asks.  While other times it's a conversation about the what ifs of life and how to be prepared. To many it may seem like making a mountain out of a mole hill, but I can sympathize because I can relate.  This is one of the many traits that make Cora so unique.   

     After reading this statement on Pinterest, I discovered something.  Cora's over analyzing the what ifs, fits me to a tee!  Maybe her unique thought processes don't stem soley from her CHD. Maybe some of the over analyzing genetically came from me.  

     Now I really have no idea if it could be, or even if that's possible, but maybe it is! I analyze situations so much!  I'm frightened I won't be prepared if that something or things actually happen.  I have mentally done this from the time I was in elementary school.  Some of my worst fears growing up were not being prepared for something...anything really! So I analyzed everything in every possible scenario just in case.  As I've gotten older I have adapted, but the thought processes that analyze the what ifs, are still there.  It is amazing that I have never thought anything of it, until I read the statement on Pinterest.

     I will make sure to share my discovery with Cora, and assure her that there is no shame in her unique thought processes that analyze situations.  Together we'll have to learn to find happy mediums in our lives.

      My lesson is so profound!  I must learn to never be to quick to draw a conclusion.  Sometimes the most obvious answer, is the wrong answer!

Blessings Until Next Time!

Drena

     

Her Revived Heart!

     Life can be filled with many joyous moments.  They can lift your spirits and give you hope.  Life can also be challenging and overwhelming.  One thing I have learned being a parent, you are never prepared for either.  Sharing the joyous moments with your children are easy!  Seeing them shine and take in life, blissfully, is all any parent really could want.  However those painful challenging moments, well they are so difficult to maneuver through with your child.  

     A while back our family went through a rough period with Cora.  Everyday was a sad day for her.  She was angry one minute, and then very upset the next.  Parenting through this time was difficult.  It doesn't matter how many books I've read, or who had solicited their advise, I was struggling.  I wasn't prepared with insight or answers to help her through her hardship.  Laid in front of me was a simple question from my CHD child, and I was a deer in headlights!  Please understand, this isn't easy to admit.  It's not pleasing to admit the fact that I fell short being there for Cora at a moment she truly needed me.  None the less, I feel it important to share.  

      Her simple question.....Why did God make her this way?  Why did she get all the issues with her heart, her learning, and her different anatomy? 

     At the time I was speechless.  I had nothing to offer her but a hug, and a shrug of the shoulders.  Unfortunately I felt like a failure.  I am suppose to be the Momma who has all the answers, who can make anything better.  But.....I did none of the above.  Praying each night I asked God to show me the way.  To quickly bless my mind so I could go back to my baby girl and give her some peace.  Waiting for some sign of inspiration to share with Cora, I searched high and low.  Then one afternoon as I was driving I received the help I needed!

     All kinds of scripture was going through my head, some I have never even read.  One in particular stuck.  Overthinking, as I often do, I thought I had to have seen it somewhere before.  Pushing that thought aside, I kept repeating it in my mind.  I continued resighting it so I wouldn't forget.  The moment I was able to look it up and read it, I knew God was giving me this verse to aide in parenting Cora.  Ezekiel 36:26 states "I will give you a new heart and put a new spirit in you."

     With that verse fresh in my mind, I shared it with my daughter.  I expressed that we may never truly know why God does the amazing things God does, but he has his reasons and we have to embrace them. The Bible says that He will give you a new heart and put a new spirit in you.  The heart you were born with had its flaws and was needing repaired.  That was God's way of giving you a new revived heart, and a new spirit, that has molded you into the perfect person you are right now!  I can't tell you life won't continue to be hard and sometimes sad.  I can tell you God only has the best for you.  We may have to look a little harder sometimes to find it, but God wants you to always receive his glories.

     I have no idea if any of what I shared with her sunk in, or made much sense to her.  However it was a wonderful reminder to this CHD Momma who faces mental battles sometimes, and wonders some of the same things Cora does.  Hopefully in time God's hand in molding Cora will show her the beauty of why she is the way she is.  Perfect in God's eyes...and mine too!

That Little Soapbox!

     I am not one to let what others say about having a CHD child effect me.  I usually chalk it up to an educating moment.  I understand that CHD isn't in the spotlight like other defects and diseases.  So I try to be more patient when someone wants to tell me why they think I birthed a child with a Congenital Heart Defect.  

However over the past few months I have conversated with some folks that have flat out accused me of this or that.  These folks have implied If I'd taken better care of myself during pregnancy, she wouldn't have been born "messed up."  At those particular times I was so devastated and hurt to the core, I simply walked away.  I said nothing, walked away and let tears stream down my cheeks.

     Unfortunately a bit of time has passed and it is still bothering me.  I so wished I would have stood tall to these folks and spoke the truth.  Even at the risk of exposing my emotions, and letting someone witness the tears streaming down my face. 

So to help myself gain closure I will say what I should have, and wanted to say during those moments.  

"I appreciate your theories but, let me take a minute to help define a few things.  I did everything by the book, during my CHD daughters pregnancy!  I DO NOT smoke, I DO NOT drink, I ate the best foods I could when I wasn't suffering from nauseousness.  I DID NOT take any medications, except my prenatal vitamins. I AM NOT obese, I AM NOT diabetic, and I DO exercise several times a week.  

So you see your theories of congenital heart defect children being born to Mothers who don't take care of themselves due to this reason, or that, is completely inaccurate!  So I'd appreciate it, if you'd educate yourself before you start making judgements, and preaching to me that her defect is somehow my fault!"

     Thank you for letting me clear myself of this.  My hope if someone, someday, has a conversation on this topic you can pass along some facts.  As I've said before.....we all need to constantly bring awareness and education to people about Congenital Heart Defects!

Blessings Until Next Time!

Drena

Pick Up Day!

     As I pull into Heart Camp, I am so excited to see my sweet girl!  Her fun filled week at Heart Camp has come to an end!  As I park, I hope she'll be excited to see me, and give me a giant warm hug. 

     Luggage and medicine are first on my pickup list, afterwards it's off to pick up my little blonde.  

     Finding myself walking quickly back from the car, I have reached my destination.  Pushing the door open I'm consumed by the noise of heart kids everywhere.  My eyes start darting around looking for my sweetness in black framed glasses.  Heart a pounding, smile plastered on my face with anticipation, I found my target.  Observing for a minute, I see her glowing face.  She is laughing, talking, and bonding.  Her demeanor is different.  Her body is relaxed, she smile doesn't look forced, and the group around her is receptive to her.  Still standing there I am in awe of my sweet girl, and so happy to see her surrounded by acceptance!  I realized that for the first time, I am truly witnessing my daughter being a typical teenager.

     With the typical teenager in full effect I am not received happily.  Yep, no giant warm hug, no hey Momma happy to see you.  Nope, I get a why are you here? I'm not ready to leave!  Let's just say the next 30 minutes were not fun for either one of us.  Watching her eyes swell with tears as she hugs each gal at her table, and saying goodbye, I see she is saying goodbye to more than her friends.  She's parting from her comfort, acceptance, and her normal.  And entering back into the abnormal, judge mental, difficult day to day life.  Observing this makes my soul ache.

     I know I've said it a thousand times, and will continue to say it until my last breath, but Heart Camp is my daughter's saving grace.  This camp brings rejuvenation and spirit into my daughter that is clearly lacking the rest of her weeks.  I so wish Heart Camp could be more than once a year.  To see her emotions sore during this week makes me so joyous!  I may not be able to provide this missing link, I so wish I could, BUT I can give her a special week each summer to sore!

Blessings Until Next Time!

Drena

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!