I am sure all of you have been asked this question a thousand times when it comes to your WHS child. I know I have since the day Amelia was born. People will look at me, tilt their head, and ask, “How do you do it?”

In the beginning, during the first year, I would pause and squirm a little. In my head, I would scream, “I am not doing anything right and I am falling apart. I am on the verge of a nervous breakdown!” I imagined myself falling on the floor, curling up and slowly rocking, waiting for the psych ward to admit me. But instead, there I stood, my eyes slightly filling with tears, not because of Amelia, but because I knew the psych ward was not coming to give me a break. I would eventually say something like, “I just do!” Secretly, I had no idea how I was going to do any of it; caring for Amelia, working full time, and mothering two very active boys!

But I really took some time the other day to think about this question. This last hospitalization was life threatening and they had to call a code because Amelia stopped breathing. And I realized there are certain things I do to get through a tough situation when it comes to Amelia.

As soon as Amelia is admitted, my husband and extended family create a schedule on who will be at the hospital and who will take care of the boys. Our parents and siblings are amazing and drop whatever they are doing to help us. Not only do I rely on my family for support, but my friends keep me laughing. Several WHS moms set up a thread when Mia was at CHOP and posted random, funny things that had happened to them over the years. Whenever I felt lonely and afraid, I would read the posts and contribute, laughing hysterically at some of the information we shared. I am not sure if they knew it at the time, but this was key to my emotional survival!

I accept help when offered. It took us almost three years to accept help from people outside our family. This time, I was out of work and Joe was only going to work every other day. Friends and coworkers dropped off food, our children’s school collected food and gift cards, and the social worker from Mia’s school set us up with a foundation to help with our utilities. I could not have kept a positive outlook this past hospital stay without all of the help we received.

So now, after three years, my answer has definitely changed. When asked THE QUESTION, I am no longer uncomfortable when I answer. I now understand that all parents of children with special needs look like superheroes to other parents. But in reality, we handle situations the same way as other parents, “Loads of help, a lot of laughter and lots of love!”

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5 Responses to The Question…

  1. Jessica Aman says:

    I always love reading your thoughts. You are very right. Great family and friends are essential. I’m so proud to call you my friend because you are an amazing woman. I’m pretty sure some of your stories in our “randomness” were the ones I laughed the hardest at. You have a great spirit even in the hardest of times. Thanks for sharing your thoughts.

  2. Kristen says:

    I love ya girl. And you are totally right. You do it with a lot of help, love, and laughter. I’m so completely and utterly blessed to know you in real life as well as online. You are an amazing friend – and I just feel so thankful that we have each other. Asking for and accepting help is sometimes really hard. You speak words of truth. Love you!

  3. BreB says:

    Everything you write I find myself going…YES! Even more so because I have two older children who are the same ages as yours. I often reply to people who make that comment that I don’t have a choice, I cope because I have to and you would too. Thanks for another great post!

  4. Dmico says:

    Hey chrissy! As a nurse working for you and your family I can truely say that you ARE a superhero! The way you juggle real life issues, and still make time for what’s important(family) is very inspiring.I am sooo very honored to be working with such a beautiful little lady (Millie) and her dedicated family. Stay strong. Your life is inspiring to everyone that comes in contact with you.So smilie 🙂 your doing a wonderful job!!

  5. shirley bidnick says:

    I don’t think twice about how I do it, but I do wonder how some of the families I read about on this site do it, especially those who have other children. All children need time and attention. Children with WHS need a different kind of attention.

    What really amazes me, is looking back, I now ask myself, ‘how did I do it’? The funny thing is, my sister, who has a ‘normal’ adult child asks herself the same thing. We are all super humans when we need to be. We are all capable of doing the unthinkable, when we are willing to. We can surprise others and ourselves in good ways.

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