You are sitting in the doctor’s office and you can sense that you are about to receive some life changing news. Maybe you are pregnant, so you gently place your hand on your belly to let your baby know that you are close, or you are holding your squirmy toddler and softly singing in their ear while rocking them with ease. You might have had to leave your bedside post of holding your child’s hand while they are hooked up to monitors and on a breathing machine.
When the doctor walks in, your body is fueled with adrenaline. They start to give you information about a diagnosis, prognosis and treatment plan. The emotions take over and there is a physiological change occurring to your body. Tears are streaming down your face, you have difficulty breathing or speaking. There is a ringing in your ears, you may feel nauseous and your head is swirling with jumbled thoughts and information.
What is happening? What did they just say? You are absorbing some of it, but you know it’s not all sinking in.
You look around and try to grasp a sense of reality while knowing that your entire world has been flipped upside down. There is feeling of isolation and that no one has experienced this before.
You leave the meeting holding medical pamphlets and feeling beaten down; red raced, puffy eyes, still trying to catch your breath from the bomb that was just dropped on you.
If you are with your companion, than you are wrapped into their arms, hoping that with a big squeeze that this nightmare is just that, a nightmare and you will awake soon to your normal life.
If you are alone, than you are on the phone calling your number one. When you hear their voice, you break down crying uncontrollably and barely able to speak. The words do eventually make it out and hearing yourself say it makes it hurt even more.
Where do you go from here? How can you envision your future when it has been completely altered without you causing it?
Oh no, that thought has now allowed the feelings of guilt to take over. You start the blame game and the finger is pointing directly at yourself. This is just too much. You can’t do this, this isn’t happening.
Then you feel your baby kick, or hear your toddler make a noise or you go back to your bedside post and see your beautiful child fighting for their life.
You have to do this. You are your child’s voice and protector. The unconditional love is the driving force to push you forward.
We got your back
As a child life specialist, our role is working with pediatric patients and their families, for their psychosocial and developmental needs. We are there to provide support, empathy, preparation and play. We help them find a sense of control and teach advocacy skills in this very complicated medical world.
I thought it might be helpful to share what to expect after a diagnosis and healthy ways to cope.
- Entitlement to Have and Express Your Feelings – You are going to have a roller coaster ride of emotions. The feelings of self-doubt, denial, guilt, anger, sadness and loss are just a few of the biggies. It is okay to have all of these feelings and more. Share them with someone you trust, write them down or hear yourself say them out loud. Your body can only hold so much. By suppressing your emotions they will eventually spill out when you least expect it. Release them and you will feel more balanced and better equipped to take care of yourself and your child.
- Searching Online– One of the first things that you may want to do is get on your computer or smart phone and start looking up medical information. It will be difficult to filter the facts from fiction and also what would be suited for your child’s specific diagnosis and care plan. I would suggest finding out if there is a medical librarian or family resource center at your hospital. They are trained to help you find the appropriate, accredited information without getting lost in the nonsense.
- Loss of Control– In the beginning there will be a HUGE sense of loss of control. You did not cause this and you did not want this for your family. There will be many days that you are overwhelmed and feel like someone else is steering the wheel for your life. When this happens start to find the small decisions that you still have control over. Small choice making can help you feel like you are in better control of the whole situation.
- Transitions– There will be many changes that will occur. Your job, home, finances, vehicle and even your day-to-day routine can be affected. This can become very stressful and burn you out quickly. If you need help, ask for it. There are wonderful programs, professionals and neighbors who would all be willing to help. It may be as simple as bringing over a cooked meal twice a week or setting up family meetings with the doctors to clarify information.
- Support System– Start to surround yourself with supporters. At first you may think that all of your friends and family members will be able to help, relate or even just validate your feelings. Unfortunately that is not always the case. You may find that some of the best people to have on your team are strangers who are going through the exact same thing. Joining a support group in town, talking to other parents at therapy/doctor appointments or finding a community site on social media may be the place to look. You may even decide to start-up your own blog; this could be a great way to release feelings, find veteran parents and even give tips on what has been working for you.
- Organization– This may not be your strong suite, but it soon will be. With all of the health insurance information, medical history and schedules, you will be very lost and overwhelmed if there isn’t some organization to keep it all in line. Purchase a calendar, note pad or use your electronic device to store all of this information, so it is readily accessible. Writing down questions and concerns as they come up will also help you to remember and bring up when meeting with the medical team.
- Me Time– The juggles of work, kids, household upkeep and now the new health diagnosis for your child, can put you overboard. Find a healthy way to release stress and commit yourself to it. Maybe it is working out, girl’s night or just taking a drive alone. Do something that will help you stay rejuvenated. There should be no feelings of guilt, as you will be a better parent to your child if you take care of yourself first.
- Sibling Involvement– Siblings play a very important role. They should be included and told what is happening. If you struggle with ways to explain it, reach out to a professional, such as a child life specialist, who can help assist you. Having them join a sibling support group is also a wonderful way to help them express their thoughts and feelings, process what is happening and feel like they aren’t the only kid going through this.
- You Are the Expert– You will be encountering many medical and educational professionals. They are experts in their specific field, but they are not the experts of your child, you are. You will know your child’s likes/dislikes, triggers/calming methods, and preferences in food, clothing, touch, people, sounds and more. Keep that all in mind when communicating with the team. Speak up and advocate for your child, your voice is incredibly important and needs to be heard.
This is a different path in your life that you thought you would be on, but just know that you are not alone. There are other parents that have already gone through this phase, are going through it now or will go through it. You will still have that amazing relationship with your child. You will teach them so much and at the same time you will learn and grow from them.
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My Experience with CPSE