My opinion from my experience
I believe coming to terms with any diagnosis is hard no matter the situation. When it comes your child, in my opinion, it is one of the biggest pills to swallow. They say it gets better with time. But I don’t think these feelings ever truly end. You learn to adjust to it and in time deal with it a little better. My son was diagnosed with Cerebral Palsy. For the first two years, coping with this diagnosis seemed to be extremely hard for me. I’m a person that hates the unknown and not knowing what the future would hold for him killed me. I knew there would be many struggles and being strong, positive, and motivated would be challenging. As I became more and more educated about CP in general, I could better understand my son’s special case. Although many palsies may have a lot of similarities, each diagnosis is different. With education, the pieces started to come together for me and made me realize that our journey would be different. This article will review some things that have helped me cope with my son’s diagnosis.
Tip #1: Dealing with the unknown
I think it’s the same for all parents when we find out that we were expecting a child. Pure joy! The furthest thing from our minds is that something could be wrong. Constantly, we fill our minds with thoughts of how our child will be. What kind of personality will they have? What kind of hobbies or things they will be into? What kind of things we want to do with them? You start planning your child’s life before they are physically here. There is nothing wrong with that. How could you not think this way? It’s an exciting time. Especially, when you wanted something for so long. Then you get hit with it, something is wrong. The picture you painted of your child’s life has completely changed. It’s really sad. I know this is not how you expected things to be. Keep in mind that this is still your child. The diagnosis doesn’t change them just their abilities.
Tip #2: It’s okay to feel
It’s okay to have mixed feelings. You have every right to feel that way. You may feel angry, sad, lost, confused, and the list can go on for days. Allow yourself to feel those emotions. Eventually you will learn to embrace them and possibly grieve. Grieving can help the soul. Holding back doesn’t help the situation. In the same breath, it’s not the end of the world. You are not alone. There are millions of moms that battle similar situations just like you. Moms that have felt the way you are feeling. But at the end of the day, we all hurt and need to be as strong as we can be. Remember, our little people need us.
Tip #3: Educate yourself
I believe what has helped me the most is to become educated. Get educated not only on the diagnosis but on your child’s specific case. The things that I find helps a great deal is to talk to doctors and the therapists, ask all the need to know questions, go through the multiple tests needed, and talk to other parents that might be experiencing the same things as you do. And in return, share your knowledge with those who are in need of support. You can find that this experience can expand your knowledge and be rewarding as well. Knowledge can go a long way and the key is finding resources that can help shed some light on the subject at hand. Know, what makes your child so "special"? They should not be defined by their disability or diagnosis. They are uniquely special because they are your child and are one of the greatest gifts that has been given to you.
Tip #4: Don’t compare your child to others
Don't compare and contrast your child to other children. Especially average developmental children. Your child will be on their own timeline. You know what? That’s okay! Not one child develops the same way. Ignore those charts that doctors feed you. Although they would like for them to stay up with development standards, it will come with a lot of work and in their own time you will see changes. It’s an ongoing process that you will have to deal with the rest of your life. So acceptance is key. Don't fret about the struggles. Celebrate the small victories. Savor each moment. Their childhood only lasts for such a short time. You don't want to spend it in complete darkness. You want to make to best of it for you and your family but most importantly for your child.
Tip #5: You are stronger than you think you are
There will be some days where you will be doubtful. You will doubt your parenting skills, decisions you have made, if you were given too much to handle, etc. You can handle it! Your child was given to you for a reason and you will give them your all to provide the best life possible. Be thankful for this precious gift. You can't see the light at the end of the tunnel but one day it will be there. Technology has come a long way. No matter what the complications are, there will be ways to adapt. Whether it's talking, walking, being independent, etc. “Where there is a will, there is a way (Kael, 2001-2017).” Right?
Tip #6: Let go of what we can’t change
Maybe not all moms are like this, but I love to be in control of things. It’s just a part of who I am. The fact that I can’t control the outcome of my child’s initial diagnosis drove me mad. You think to yourself, why my child? Why any child? It’s something you cannot control. Life can throw some unpredictable curve balls and you just have to learn to let go. You just have to be ready to catch them or hit them out of the park. Learning to let go has been a very hard thing for me to do and as difficult as it can be, I pick my chin up and push through every day for my child.
Tip #7: Acceptance
Learning how to accept what is given to you isn’t easy. You can’t change your child’s diagnosis but you can improve the situation and their quality of life. The quicker you accept this, the easier it is to cope with everything. I didn’t want to hear the words CP from the doctor’s mouth at all and was in denial for so long. When I realized my little boy was not going to walk or talk at a normal rate, I tried really hard to stop being in denial and accept the situation. It’s like you just wake up one day with a whole new perspective. I was going to accept all the struggles for what they were and embrace a new tomorrow.
Tip #8: Embrace it, turn it into a positive
Embrace your child. Embrace their differences. Encourage them. My son’s walker of course stands out like a sore thumb, but we bring it with us to places that we feel comfortable letting him walk around. We embrace it. Yes, we get stares and the children ask their parents questions, but we block it out and just go with it. We encourage him to walk with his adaptive gear as well. Why not turn these things into a positive? This is how their life will be. This is what will help them out in the long run. Never be ashamed or embarrassed about needing adaptive gear. When they see you embrace this, it makes it not seem to be such a big deal and be more a part of life. It’s just like people needing glasses to see or a hearing aid to hear. Those are things that help us have a more normal life. Why not adaptive gear such as braces, walkers, wheel chairs, etc.? Teach your children to be confident and most importantly independent. The world will not always adapt to our children. So that’s why they need to learn to adapt to the world.
Tip #9: Seek Support
Whether it’s family, friends, coworkers, therapist, doctors, support groups, etc.- get support! Support is what helps you through this. Support helps you not feel so alone. Find people you can talk these things out with. Holding it in will only eat you alive. Just find someone that is supportive because support is what keeps you going. You will need every bit of it. Connecting with people who know the struggle is always so comforting.
Tip #10: Get help if needed
It’s okay to admit that you need help. Whether it is physical, mental or emotional help, you need to take care of yourself to be able to take care of your children. Sometimes you may need a break, time to yourself, or therapy, whatever you need to do, do it. Some moms rely on medication as well. All these options are okay as long as it helps you be okay. Don’t let anyone make you feel you are less of a mom because of it. These situations can be difficult sometimes. If it makes you handle things better, don’t be ashamed of it. You are human. We take care of everyone else’s needs and taking care of ours tend to get put on the back burner. Do what will make you healthy as well. So, I hope that all of the things I have just discussed can shed some light on how to cope with these situations. It will not be an easy road, but in the end it is all worth it.
Kael, P. (2001-2017). BrainyQuote. Retrieved from www.brainyquote.com: https://www.brainyquote.com/quotes/quotes/p/paulinekae120326.html