Death of an Inspiration

I was having a good day at school until I checked my Facebook and was informed that a great CHD Advocate Steve Catoe had died last night.I was stunned as he had just posted a new blog entry yesterday afternoon. Of course I didn’t believe it at first. But when a friend posted the article written about him,I just had to believe it.I never got the chance to meet him but from what I have heard about him,he was a wonderful, giving man who chose to LIVE.

On Facebook he was the guy that was willing to answer any question anyone had about CHD’s.He was there to support and encourage each and every one of us as he continued to fight his own battles.He kept trying to educate the world about CHD’s all the way to his final night on this earth.I only knew him from Facebook,but it still feels like losing a member of our family.The CHD community IS a family and we have all taken an emotional blow today.

Steve was an inspiration to all of us. He put living on the front burner. No matter how much he was struggling in his own life.He was 44 year old and the oldest person to be living with his CHD.He made me want to do more and be a better person and I thank him from the bottom of my mended heart for that.It is going to be very hard to find anyone who can fill his shoes.

There will never be another Steve Catoe. He was one in a million.

RIP Steve.We love you and you will be missed.

Not Fair

I really really hate CHD’s.I have never had such a strong hatred for them as I have developed over the past few months.It’s not easy being an adult CHDer.We know better than CHD parents what these kids go through. We know the pain and feelings of fear and anxiety better than the parents do.I hate that. No one should feel the the kind of fear that CHD kids feel. No one should have to go through the pain that these kids have to endure.My heart breaks for the parents who have to hand over their child to a doctor or a surgeon honestly not knowing if they are going to see their child alive again.Nothing is gauranteed.Even the simplest procedure can go horribly wrong and parents can lose their child.

Some CHD parents have called me inspirational and a miracle in addition to so many other things but I think they are the ones who are inspirational.They go through so many emotions on a daily basis and they still try to stay strong for their children.Honestly I don’t know if I could do what they do day after day.CHD parents deserve just as much if not more recognition than adult CHDers do because of the daily sacrifices they make that go far beyond the sacrifices that parents of healthy children make. From having to drive an hour or more to the hospital for a procedure at a hospital that they are most comfortable with to the simplest things like not having a night out because their heart child is sick.

I know too many kids who have lost their fight with CHD’s and it makes me angry. I know anger doesn’t solve anything,but I am still angry. Angry that 13 CHDers died in an 8 day span.Angry that even after long battles CHD’s still claimed so many lives in recent times.

I know I shouldn’t feel guilt for living,but I still do.I am working on it because the CHDers that died-my heart sisters and heart brothers wouldn’t want me to feel guilty. They would want me to carry on the mission that they didn’t get the chance to help me with.They would want me to continue educating and informing the people that don’t know what CHD’s are.

I believe all the CHD angels are right beside me every step of the way as I continue to educate the people outside our CHD world about CHD’s. I could never do it without them standing beside me in spirit.

Anger

Quite bluntly anyone who claims that they do not ask “why me?” in hard times is just lying. It’s natural and normal to want to know why they must go through whatever they are going through. As human beings it’s human nature to be questioning.I know when I was younger I asked “why me?” on several occaisions.

Now I have to revisit that “why me” statement.Not for me though,but for my heart sisters and heart brothers who went to heven recently. Ten in the past week.That is unacceptable to me and it makes me angry that all the prayers and positive thoughts and medical advancements were not enough to save these ten CHD Warriors. Some fought the fought for years and some only fought the fight for a few weeks.That doesn’t make it any harder or easier on the CHDers they left behind.CHDers know that at any time,their hearts could stop and they could die.Without any warning or preperation and despite all the surgeries,procedures and medications.

I’m beyond angry and I have spent the last few days crying my eyeballs out for my heart siblings who lost the fight at such a young age.At school today all I wanted was to hit something.Maybe a brick wall. Rationally I know that’s stupid but the anger is bubbling up inside of me and I have to turn it into something productive so I don’t break my hand.

Why isn’t there more awareness for CHD’s? Why does cancer get much,much more recognition while CHD’s are the number one birth defect? I want parents not to have to experience the kind of pain that so many families are enduring right now.It’s not just the CHDer’s who have died recently,but also the families of Cora,Seth,Aiden,Serena,Zoey and so many more.

I don’t want to be angry anymore. I want my heart sisters and heart brothers to be proud of me.Especially the ones in heaven.I want to make sure that I keep raising awareness in the hopes that someday people will say “Did people really die from CHD’s?”

Irrational thought~Guilt

Every single time I have heard the term “survivors guilt” I have applied it to soldiers who watched their comrades get blown up or gunned down while at war.Today I realized I am suffering from survivors guilt myself. In just a week the CHD community has lost 7 of our own.Kaitlynn,Caleb,Jessica,Alexander,Tim,Ewan and Doug.All seven of them were so brave all the way to the very end.It has been such a rough week for all of us in the CHD community,regardless of whether or not we knew the CHDer well.

Nearly 25 years ago I was born and the medical comminity did not know nearly as much about CHD’s as they do now. I was not supposed to make it and yet I did. Yet these children who had the latest and greatest in medical advancements did not.Why was I spared and not them? Why was my family spared the grief that these 7 families in addition to so many other CHD families were not spared? Of course I am greatful for my life,but it makes no sense to me why I was spared and so many small children that I know were not.

Other than a few slight issues I have done very well and therein lies the second part of my guilt.Seeing all the CHD warriors who live a daily struggle makes me feel guilt. Guilt that I am doing so well and they aren’t. Guilt that my days of constant prodding and poking appear to be over.Most of all guilt that I am thriving while so many of the youngest CHDer’s have to struggle for every breath.

I feel so much guilt that I am healthy right now while so many of my CHD siblings are not.I know it’s irrational and I know it’s no one’s fault,but damn it I want to fix it.I want there to be less deaths as the medical community increases their knowledge of CHD’s.I want less families to have to experience the gut wrenching grief that these seven families have gone through this week.

30th of every month

Six months ago I never cared what I wore on each day.I just threw on a pair of jeans and a t-shirt.All of that changed in the beginning of June when I met Kristine over Facebook.Her daughter Cora had passed away at five days old from an undected CHD.No parent should ever have to hear cause of death from a coroner.Since Cora’s passing Kristine has dedicated her life to making sure that no parent ever has to experience what she and her husband Ben have had to endure.

Without ever meeting them,Cora and her family have touched my life in so many ways.I know Cora is so proud of her beloved Mommy and Daddy.

I wear pink in support of Cora and her parents desire to have something good come out of this tragedy.I wear pink to remember Cora even if I never met her.I wear pink for her, knowing that even in death Cora is continuing what she was brought here to do.Through her mother’s work,Cora is educating moms and dads and sisters and brothers and grandparents about CHD’s.

Cora was in our lives for such a short time,but I know she will be in all of our hearts for a lifetime.

Thank you Kristine and Ben for allowing so many of us into your life,even just a little bit. Your whole family is very loved.

Wear Pink for Cora on the 30th of every month.

Religion

I am not religious.Not in any way shape or form.Despite me being raised Catholic I have not gone to church regularly since I was ten.That said I do respect those who are religious and who do have faith in God.I may not believe in God but that doesn’t mean that I don’t respect the ones that do.

With that said I for one am not praising God for bringing Logan a heart.It’s hard to praise God for such an incredible gift without remembering the other side.A family is grieving because they have lost their child.I seriously doubt that they are praising God for anything right now.When transplants are concerned it’s hard to praise God because someone out there is grieving the loss of their child while the recipients are praising God.

I thank medical sciene that has saved so many children through surgical procedures and transplants.I also remember that we still have a long way to go to decrease the number of Angel children that have left us.

My best friend and I had a discussion in which we decided I am of the sciene brain.I cannot believe in something that I cannot hear,see or touch or smell.She has faith even if she can’t see God,she believes he is there.

I know my aithiest view on things may cause me to lose friends and I have come to terms with that.I respect those who have different beliefs than I do and that’s all anyone can ask of me.I hope I don’t lose anyone’s friendship but I totally understand if I do.

❤ and hugs

Marital Stress

Few people tend to recognize the stress having a CHD child puts on parents.Not only as parents but as husband and wife.No longer do they have time to sneak away for a day alone together or even an evening out. Their whole lives revolve around their child with a heart defect.Their worlds center around doctors appointments,percriptions and making sure their child eats.Surgeons want kids to be at certain weights before surgeries and getting your CHD child to eat can be a stressful battle.Especially if one parent is the primary caregiver and the other parent works.

The stay at home mom or dad has a difficult job to keep the child stable and comfortable and happy,all the while praying the child’s oxygen sats don’t drop or his lips don’t turn blue.The stay at home parent insists that they aren’t jealous of the other parent who works,but in reality they probably are just a little bit because the working parent gets to go out and escape the house for a bit whereas the stay at home parent likely can’t do that when their heart baby is little or about to have surgery.

Hospitalizations are very stressful on parents.It’s not easy seeing your child hooked up to machines.Logically you know the machines are there to help your child,but it is still so painful to watch your child go through this.Moms in particular often refuse to leave their child’s side and it is usually Dad who encurages Mom to go for a walk or something outside of the hospital.Moms need to know that you are not a bad parent for taking time away from the hospital.Have a family member or close friend sit with your child while you and your husband go for a walk outside of the hospital or even go to dinner.Moms and Dads need time away from the hospital as well to take care of themselves. You cannot care for your child without effectively taking care of you as well.

After a hospitalization a young child often will refuse to be separated from Mommy and or Daddy and for awhile that is okay,but you cannot allow them to prevent you from going anywhere.You need to reassure them that you will be back soon.It is at this time that one parent usually begs the other to take a break and acompany them to dinner and or a movie.GO! Leaving your child with a family member or a trusted friend is a good thing for your marriage.It reassures your spouse that they are still a priority in your life.

Making time with your spouse can be difficult but you have to make the time. Even if it’s a quick kiss or a quiet walk around the block with just each other. Or even a scheduled weekly or bi-monthly date night with your spouse can help you recconnect not just as parents but also as husband and wife.Recconnecting includes finding both the emotional and physical intimacy that you may have lost during your heart journey.

On these date nights,make it a point not to talk about the kids.You are on this date to recconnect with each other.The same goes for the physical recconnection.Make it a rule not to talk about the kids and put the focus just on you two and your love for each other and your committment to your marriage.

Finances

Having child in itself is not cheap but having a child with a chronic condition sucxh as a CHD is extremely expensive.Depending on the insurance your family has the copays for perscriptions or doctor visits can range from $5 too $100 or even higher.Insurance doesn’t cover everything so parents are still left with large bills.Especially when their child is hospitalized or subjected to expensive testing. I was in the hospital for six weeks when I was 12 and 4 of those six weeks I was in the Pediatric ICU.My bill was expensive. My mom told me later that it was over a million dollars.

Then there are the insurance companies that won’t pay for things that are vital to monitor a CHDer’s condition.Such as a Pulse Oximeter.Many insurance companies refuse to cover it if your child is not on oxygen.Just because a child is not on oxygen does not diminish the need to keep aware of his or her oxygen sats.How can parents know how low it’s slipped if they don’t have an accurate oximeter? They can’t.So they end up paying out of pocket for a device that insurance SHOULD cover. I know parents say that it’s completely worth it to keep their child healthy,but I also know how frustrating it is not getting a valuable piece of equiptment covered by insurance.

Parent have to continually fight for their child to get the coverage they need and to get the equiptment they need when the insurance company refuses to cover it.It shouldn’t be a struggle but it is because insurance companies are not educated in the needs of heart children.

Some parents elect to have some sort of fundraiser for their CHDer to help with the costs of a hospitalization or medical treatment or even everyday living expenses.I know some people don’t want to contribute because they are afraid they are being scammed.That is a very real fear and also a very rare occurance.The vast majority of these fundraising events are legitimate and necessary to keep families from feeling as though they are drowning in bills.Families often feel bad that they are asking for money,but when a child has a CHD,the medical expenses never go away.They continue on throughout the child’s life. Raising money is something that friends and family can do in support of the CHDer and the rest of the family.To help ease the strain slightly.

Sometimes parents need help

Parents of children with CHD’s face more than just the fear that their child’s lips are bluer then yesterday or that their sats are lower than they were yesterday.They face the realization that they are overwhelmed. Many parents are too proud to ask for help,but they need it. If parents have family in town they need to reach out to their families and admit that they are overwhelmed and that they need some help.Asking for help is one thing that parents can do for themselves because even parents need to take a break.Taking a short break from your CHD child doesn’t make you a bad parent.It makes you an even better one because you want to be mentally stable and you can only achieve that by taking care of yourself.

Family members and friends of the family ofen feel at a loss as to what to do.This is when parents of a CHDer has to look beyond their pride and ask for help.Whether it’s doing the laundry so the parents can rest or taking care of other kids or pets.Bringing meals to a family whose child is hospitalized can also be a big help as many parents refuse to leave the child’s side.Parents have to eat to keep up their strength.Even just lending an ear can be what the parents need especially when they are feeling really overwhelmed and not willing to leave their child.

If a child is hospitalized,family members can take care of the house,pets and other children so that the parents can focus on their hospitalized child.It takes stress off the parents knowing that someone else is handling the outside stuff so they can focus on their hospitalized child.

When there is no family in town,you need to ask your friends for help.Especially other heart families who are often very willing to help. Our MLH group delivers meals to area hospitals when one of our families is in the hospital.I can tell you right now that the families are so appreciative of the guesture.

Prayer is another thing that parents ask for sometimes.Especially when their child is undergoing a procedure or a surgery.While friends and family may not pray,they can certainly send good thoughts and positive vibes to the family. That is their form of prayer.

So next time you are feeling overwhelmed,reach out to a family member or friend. They may not understand what you are going through,but if they love you and your family they will more than likely offer help to you and your family.

The best phrase a mother or father can hear is “How can I help?” because that shows that the person asking really wants to try and help lighten the load a bit.

Direction-less

I wasn’t sure I wanted to write this but maybe it will help me vent my frustration.

I’m nearly 25 and still at a community college.I am downright terrible at math which is the reason I am still at a community college.Well that and the fact that I am not sure I WANT to go to a 4 year University.I want to find something I love and I hate that I haven’t found that thing yet.I am getting burned out with school and if there were more jobs available,I’d quit school and work for awhile.I cannot do both.I have found that either my job suffers or my grades do.

When I started at the community college I was a film major (for a semester) then I was a criminal justice major.I planned on going to law school.I became disenchanted with that after obtaining my AA in Criminal Justice.Then I changed my major to Pyschology.With the plan that I would finish up at my comminity college,go to a 4 year and then get my Masters in Child Life.Then I nixed that idea knowing that I would have a heck of a time not bringing my work home with me.I considered going to school to be a Pharmacy Tech,but after visiting the school,it didn’t seem right.Then I checked into photography schools and culinary schools and none of them felt right.

So I am starting at the comminity college again next week (year 7) and I am so frustrated I am not looking forward to it.I have considered going to school to be an Echo tech but I am not sure that is what I really want to do.It’s frustrating because I have so many friends who are completely done with school and so many others who are still in school but are higher up in their education than I am.

I am still looking for that career idea that excites me and I have yet to find it yet.I know my logic is faulty but I cannot help but think that at nearly 25 I should have a career picked out and be working in that career field.

I know other CHD adults wonder if they can handle their chosen career or if they should pick something else.Or if their employers have good insurance that will cover them.Or if they’ll get fired due to absenteeism.I am not even there yet.I am still trying to lock down on a career path.

I am hoping I figure out something soon.This college thing is getting old…