If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you. - A. A. Milne
So today is the last day of CHD awareness week which also the day of the famous La Festa di San Valentino or known as Valentine's Day.
As everyone celebrates love today, some people mourn for the remembrance of their loved ones losing the CHD battle or those who are still fighting CHD so hard.
CHD sucks, it robs us our kids' health. Forcing us to choose between hell or hell, between surgery or a deteriorating heart condition. We are seeing a bumpy road without an end. Uncertainty hits us hard, we only hope our kids could blow their birthday's candle on their 1st, 2nd, 3rd and so on.
Every cardiological appointment turns to nightmares. Every blood test is bloody difficult and scary. Every cardio check could lead to another heart catheterization.
"We are afraid that he gotta do another open heart surgery soon"
"His heart can only pump 30 percent to the rest of the body, he needs a heart transplant"
"I am sorry, there's nothing we can do, his case is really complicated and difficult, he can't be operated. His case is conservative!
Those lines above are real and authentic yet painful and depressing at the same time. Imagine holding your baby after 9 months in agony, only to find out that you have to bring him to the operation theater to be cut and fixed altogether. It is heart-breaking, the worst ordeal the parents could face, ever.
Never Ending Surgical and Medical intervention.
"Don't worry mam, he is going to be okay"
"The risk is considerably low, so you guys can stay cool"
Initially, after the first diagnosis comes out, a team of doctors would recommend fixing your son's heart through a surgery. The voice inside you would say "well, thank God at least this surgery will fix his heart one time forever". In fact, you are wrong, CHD doesn't work like that. It is for a reason to be called Congenital Heart Disease, a disease that is deemed as an abnormality presents at birth. This abnormality would force the body to compromise as it grows. Kids with CHD could face other complications when they are older hence they need lifelong monitoring. Heart, lungs, teeth, brain are amongst those that need specific care and observation.
Our kids are vulnerable to bacteria or virus.
Having a defected heart means a lot to one's body. The body works well if the heart pumps the blood properly throughout the body. This doesn't happen in the body of kids with CHD. Their bodies don't get enough clean blood and consequently, this body lacking oxygen has to deal with a harsh environment that is full of bacteria and virus. Bacteria and virus could easily snap and cripple the immune system while the body is busy adjusting to function based on its defected heart mechanism.
A simple cold in normal kids could mean an ICU stay for kids with CHD, and a simple sneeze could lead to bronchiolitis for kids with CHD. That starts to take a toll on us and our kids. We have to be really strict about personal hygiene because we are 'better safe than sorry'. It's so likely too that our kids could lose the battle to CHD if they are hospitalized frequently due to infections.
Global developmental delay
The brain represents only 2% of the body weight yet it receives 15% of the cardiac output and consumes 20% of the total body oxygen (Magistretti and Pellerin, 1996; Quastel and Wheatley, 1932).
This suggests that the heart plays a great role in the development of the brain, the less oxygen that the body has, it is unlikely that the brain could function to its normal mode. Kids with CHD could suffer from mild to severe developmental delay but they definitely are able to bounce back. After all, it feels unquestionably saddening to see our precious kids fall behind the other kids in development terms but that surely will help us to realize that we should not to take anything for granted.
Fighting CHD is costly
Fighting CHD could cost us an arm and a leg. It's expensive, fricking expensive that most people in developing countries couldn't fix their kids' hearts due to financial problem. Some people that I know through my blog and social media are even down to the point of letting CHD as it is and that they can't afford the medical expenses, they are going to be in 'surrender mode' while secretly hoping and praying to God their children could make it miraculously. We can't judge these people because we don't walk in their shoes. Life is hard in my home country Indonesia that I decided to move at all to Italy. Lucky me, my husband is Italian and in Italy, we don't have to pay a penny for medical interventions nor for the rehabilitation (yet we pay incredibly high taxes here).
To those who ask me on how to be financially able to fix their kids with CHD, I just can say: when you know that you are pregnant, do a fetal echo and join health insurance right away. If you can't do this, either join a support page or go set up a gofundme to let people help you. There are still many good samaritans outthere, trust me, don't lose hope.
To all CHD parents, either the ones who are still battling CHD or the ones who have lost the beloved ones for CHD, I salute you. It ain't easy at all in a word can describe. From the very first time you listened to that diagnosis, your heart sank. I know deep inside of you, a voice whispered "please, let it be me not him!" and then I also know you cursed yourself that you couldn't prevent this thing to occur. You have to know that you couldn't prevent this to happen because it's 100 percent unpredictable. Now show yourself a bit of love you deserve. On this valentine's day, I hope you realize that love will show you the way. You rock this parenthood and may the odds be always in your favor.
Before I end this post, I'd like to quote inspiring words by Shelley Colquitt, President, and Founder of Hope's seed (please follow the link to Hope's seed and consider making a donation)
I see you taking care of everyone, making blended food so your child can get the nutrition he needs through his button, getting up to alarms for your child who is on a ventilator, sleeping with your child because you are afraid he might get up in the night and hurt himself because he doesnt understand.
Do you ever take care of just yourself?
Do you get the opportunity to have someone to pour into you, laugh with,to endure with, to wipe the eyeliner from beneath your eyes?
If you don't you will never be able to walk this road if special needs parenting. Yes, for awhile you can, but there will come a point when you and your body can't anymore.
Take care of you hug your hips, read books, lay in the grass.
You do not have to fill your spaces with trying your hardest to keep your child alive, safe, calm, or happy all the time.
If you don't fill your soul, there will never be enough energy for your child
Let light flood the empty parts of your heart and lay down let your body heal and fill with sunshine.
Do not make yourself into anything other than the person you are.
Do not lose your identity, there always was an identity, you have never ceased to exist.
Do not disappeared, despite this hard road. Do not vanish.
Breathe, deep, shaky, powerful gulps of air. Do not suffocate.
Take time to wander into the places of yourself you’ve been too busy and afraid to touch,
You may find bruises, you may find scars, know yourself, map yourself, do not lose yourself.
Sit down on the side of this road, breathe, if you miss a therapy session for your child it's is ok, call your sit down, times your therapy session.
You silently carry emotions inside your heart for far too long.
You are not a backpack, or a hamper, or a trunk for all of the trauma of this journey to sit and rot inside of. You are not luggage, you are a person.
Help will come to you in forms that you don’t recognize. Let other people love you and pour into who don’t need anything from you. People will love you for your face in the morning after a hard sleepless night of special needs parenting Let them pour strength in to you.
Let people in who will love you for the way your voice sounds when reading the endless research papers on your child's diagnosis.
Learn to be fresh. To begin each day without being mad at yourself for yesterday’s mistakes because you forgot number 75 on your list of 900 things you need to do for your differently abled child.
Learn to sit in the rocking chair and hold your flaws gently, cradling them, learn to trust your balance-beam heart.
Carry inside of you the story of a person who is a tapestry. A person made to help flowers grow, A person made to give the world something no one else could. A person made in divine light.
Learn not to lose yourself, this world needed you to be you.
Happy Valentine's Day everyone!
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