Hand to Hold's Official Blog: Written by Parents for Parents

Dear Mom Waiting For a Diagnosis: Five Things to Remember

It is completely overwhelming when your child is facing a serious medical diagnosis. This kind of diagnosis can come during pregnancy, shortly after birth, or many years later. The diagnosis has many different names like prematurity, Down’s Syndrome, Cerebral Palsy, cancer, autism, or Chronic Lung Disease. Some diagnoses’ have symptoms that can be managed with medication or treatment, others do not.

Our stories are all different. But as parents facing a serious medical diagnosis for our children, we do have one thing in common: we are scared.

After all, this kind of diagnosis is life-changing.

We faced diagnosis after diagnosis when our son, Jaxson, was born four months premature: acidosis, sepsis, hypospadias, PDA, ROP, Chronic Lung Disease. There were tests for Intraventricular Hemorrhage (IVH), Cystic Fibrosis, Horner’s Syndrome, and Periventricular Leukomalacia (PVL).

And then, six months ago, Jax was diagnosed with a brain tumor. Considering all we had been through, I should have been a pro at dealing with a serious medical diagnosis. But this one sent me over the edge.

There are so many unknowns and stacks of paperwork that often lead to even more questions. I am about to drive myself crazy with anxiety about his next MRI.

While trying to find ways to deal with all of Jax’s diagnosis’, I discovered a few strategies that have helped me stay (mostly) positive. Maybe these strategies can help you, too…

Dear Mom Waiting for a Diagnosis,

Dear Mom Waiting For a Diagnosis: Five Things to RememberWe are in the thick of things right now, me and you. We’ve just been dealt a hand we never expected: we are waiting for a serious diagnosis for our children – a diagnosis that could be life-changing. This is overwhelming, stressful, and intense. You are not alone. I’m scared, too. Here are five things to remember that can help us through this stressful time:

1. Coping looks different for everybody. How you react to a diagnosis may not be how someone else will react; neither of you are wrong. For example, I want to talk and share with anyone who will listen and I often just blurt things out as a way to process what’s happening and formulate an idea. My husband, on the other hand, internalizes what’s happening. He does not like to talk about the diagnosis until he has had time to fully think through his ideas and fears. We have different ways of dealing with and talking about the diagnosis and that is ok.

2. It’s OK to get mad / sad, but don’t let those negative feelings take over. It’s easy for me to become a ticking time-bomb filled with anxiety, stress, and worry. So, I’ve started a new strategy: when I start to feel sad or mad, I set a timer for 10 minutes. Then I give myself permission to wallow in that feeling or wander through all of the “what-ifs.” After the 10 minutes is up, I tell myself it’s time to move on and I don’t allow myself to get sucked into the negative anymore. Giving myself a set-aside time each day to worry prevents me from worrying all.the.time.

3. Google is not your friend, but it doesn’t have to be your enemy, either. The internet is a good place for information and support. It’s also a good place for fear and discouragement. Everyone’s story is different, so I found plenty of articles and blog posts that made me feel better or worse, depending on the day, about Jax’s outcome. I’ve learned to be selective about the research I do on the internet. Right after Jax’s diagnosis, I joined a bunch of online support groups – this was not a good idea. After being bombarded by “worst case scenarios” I finally decided to leave most of those groups. Since then, I have found an online support group for parents of kids with Jax’s specific diagnosis that is mostly positive and supportive and that’s what I need right now.

4. Try to focus on the space between thoughts (and practice other anxiety-relieving techniques). Anxiety is the real kick-in-the-pants when you’re facing a serious medical diagnosis. Sometimes, my mind starts racing – I worry. And worry. And worry. And nothing good comes from that. I learned a technique when my mom was diagnosed with cancer and it helped me immensely. I try to focus on the space between thoughts. This means I purposefully look for the quiet space in my mind. When I first started doing this, I grasped at thin air – there were no quiet spaces! With practice, I’ve been able to slow down my thoughts enough so I can tell where one ends and another starts – this helps me stop the cycle of anxiety and calm down.

5. Hope is a very powerful thing. Truthfully, it’s easy for me to wonder if we used up all of our luck. I mean Jax was given only a 4% chance of healthy survival when he was born. And since he has overcome so many obstacles from his prematurity, will this brain tumor be it? The type of tumor Jax has accounts for only 2% of brain tumors – it’s rare. We’ve been on both sides of the statistics so far. And that is where hope comes in. I have no idea what the future holds – nobody does. So, I choose hope for a positive outcome. And for me, that hope comes in the form of a smile and belly laugh from my son.

We are stronger than we think, mama. We will make it through this. The diagnosis is scary, but that’s not all we have. Give your child a tight hug right now – smell their skin and feel their weight in your arms. Close your eyes and hold on to this peace – this love. It’s what makes all the scary days worth it.

Love,

Another Mama Who Gets It

What are some strategies you use to make it through a tough diagnosis? Would you share them in the comments to help another parent facing a similar situation?

Andrea Mullenmeister About Andrea Mullenmeister

Andrea Mullenmeister (MN) is a stay-at-home-mom for a little adventurer. Jaxson decided to meet the family while they were on vacation! After a terrifying helicopter ride, Jax was born at 23 weeks 3 days weighing 1lb 8oz. He suffered from severe ROP, humongous inguinal hernias, Bronchopulmonary Dysplasia and severe hyspospadias. After 93 days in the NICU, Jax came home. He is a happy and mostly healthy toddler with only minor issues. Andrea volunteers on a parent advisory council for "Jax's" NICU and shares their story to give other parents hope. She writes about the life of her micropreemie at An Early Start. You can also follow her on Facebook, Twitter, and Pinterest.

Comments

  1. Thanks. I needed to read this today.

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