My son will be seven in a couple weeks and I can’t decide if I have a harder time accepting how fast he has grown or realizing how long he has struggled. My son was diagnosed with an incurable disease as an infant and it was a very scary time for us. I thought I would write myself a cheat-sheet as the mother of a newly diagnosed child:
* You don’t have to have all the answers right now.
I know it feels like you should but deal only with the issues right in front of you. Ask the questions but don’t overwhelm yourself. There will be time to become an expert, but it won’t happen in one day.
* Take what you learn while researching lightly.
No child is the same. There are worst case scenarios for every illness, but don’t assume the worst until you must. Again, deal with the here and now.
* Do not be afraid to make a phone call to your child’s physician.
I once was hesitant to call my son’s neurologist but I got over it. Don’t hesitate to pick up the phone, even if it’s to ask additional questions. Medical staff really are there to help.
* Buy a notebook.
The first year of post-diagnosis is a blur. It will be hard to remember everything. Write down what you feel is important. It will come in handy during doctor’s appointments. Also, write down all your questions before those appointments. Until you get the hang of your new normal, life will be chaotic.
* Speaking of papers, you may want to organize a place for paperwork.
Life in a few years will be full of paperwork. These documents can be a lifeline of valuable information. DON’T LOSE THEM!
*Get in contact with your local county funded board of disabilities.
Head Start and the local health department are also good places to contact. There are many people and programs designed to help children facing life altering illnesses. You may also want to speak with a social worker at the hospital.
* Love your child.
I know this may sound silly to say but sometimes the addition of a diagnosis can make you feel distant from your child. He or she is the same child they were before you learned of this reality. A child can feel a difference even if they are not able to verbalize it. Affection speaks it’s own language and it’s understood by all.
*Feeling distant from your child is normal and you are not a bad parent.
There will be days where you will feel like you can no longer relate to your child and you may wonder if you still love him/her. I assure you, you still love your child and you will experience a love deeper than you have ever imagined.
* Life doesn’t end here.
Right now, it feels like the life you knew is over. Yes, you will morn. This too is normal. The loss of a healthy child is real and you need to take your time to work through the grieving process.
*Life is now about taking one day at a time.
This was the hardest reality for me to face. I could no longer dream of tomorrow because every day with disability and disease is about getting through today.
* Do not limit your child.
Some may disagree but you child has great potential. Even if your child is severely disabled, he or she can teach you great things.
* The sooner you let go of the guilt, the better.
Guilt does not change reality. Replace guilt with determination. Every time you feel like you are not doing enough, resolve to try harder.
* You don’t have to be strong for anyone, except your child.
There will be times when your child will look at you with fear in his or her eyes. At those moments, you must be ready to say, “I’m here and everything will be alright.”
* You are this child’s hero and you will be their champion.
You are stronger than you know and you will do great things, even when you feel like you are failing. You will be a soft place to fall, a source of strength, and a light for your child in dark times. You may feel at your weakest now, but your courage is about to be unleashed.
* Speak up and speak out!
You have this child for a reason, find it and fulfill it! Use your voice and don’t feel bad about it.
* This just may revive your hope in others.
You will experience compassion and understanding from many people. You will have a rare and special opportunity to see how much love is in this world.
* Don’t be afraid to reach out.
There are resources and people waiting to help. You are not weak by asking for help. You now have a very heavy responsibility.
* It’s never too late for a new start.
There have been days I would rather forget. Some days are extremely difficult but there is always a chance to try again. Regardless of what happens in a day, you can always step back, take a breath, and work for the better.
* You won’t always feel this bad.
I know it may be hard to believe right now but it will get better.
* Blow bubbles, sing silly songs, and laugh with your child.
Smiling won’t be a cure but it will help heal your heart!
There will inevitably be days when you will feel like life is unfair and you are powerless to change it. Remember, you are not alone. There are many parents experiencing the same thing. Most of these parents will tell you how they have been transformed for the better because of the journey in which you are now about to embark. You will see life more clearly and love more selflessly. You will see life through the eyes of a special needs child, and it is life changing.