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7 Survival Tips for Parents of a Seriously Ill, Disabled or Injured Child

Kelly Anne Dolan Memorial Fund - Ill Child

As a parent it’s probably the worst thing you can ever imagine, the serious illness, injury or death of your child. I know the thought terrifies me, and I know some of you, my readers, my friends, have lived through this. I was contacted by the Kelly Anne Dolan Memorial Fund (KADMF) asking if I’d like to share information written by their founder, Kelly’s mother, Peggy Dolan.

Kelly Anne  DolanTragically Kelly Anne Dolan was diagnosed with a rare form of leukemia and her parents Peggy and Joe learned how the serious illness of a child can affect an entire family–emotionally, physically, and financially. I’m sharing this because either you or someone you know may be going through just such a time, and I hope you will share it with them. I believe it will help.

Kelly Anne Dolan Memorial Fund - Dealing with a seriously ill childBeing a parent of a seriously ill, disabled or injured child places one in a precarious position. Trauma, illness and hospitalizations upset daily routines and test even the strongest relationships.  What can be done to keep your head on straight, your health strong and outlook hopeful?  Even what may seem like superficial changes may make a world of difference in surviving the many pressures involved with the care of a seriously ill child.

Tips for urviving with a sick or injured childPeggy Dolan, founder and Executive Director of the Kelly Anne Dolan Memorial Fund (KADMF), believes the following tips will help to maintain normalcy during your child’s time of crisis. The ripple effect of how parents handle these situations can have both short-term and long-term effects on their children and relationships.

  • Ask for and accept help. Friends, neighbors and family members often feel helpless – they care about you and want to ease your burdens. Even the smallest act of kindness will make a big difference. This is no time for pride to stand in the way of getting a break. Friends could pick your children up from school or a family member could bring dinner to the hospital. Say “yes” to financial support, if offered.
  • It’s easy to look beaten down and bedraggled after worry and sleepless nights take their toll – fight it. When all aspects of your life may seem unmanageable, your appearance and personal hygiene are two areas of which you have control. Looking in the mirror and seeing the person you remember from better times can boost your confidence and optimism. Dress as if you were going to the office, fix your hair and put on make-up. Smile. Your kids will be comforted in seeing you look like your old self and love you for it.
  • The stress of caring for a seriously ill child can make you sick. A proven reliever of stress is exercise. If you can’t find time to get to the gym, a break in your routine could allow for a walk around the block. Even 15 minutes a day will boost your immune system, strengthen your muscles and lower your blood pressure. If you can’t leave the house – exercise indoors. OnDemand offers thousands of exercise programs and there are countless exercise DVD’s. Stay well. A child’s anxiety and stress will only worsen if the caregiver gets sick.
  • Eat healthy. When parents are dealing with trauma, exhausting schedules, overwhelming medical appointments, protocols and treatments, eating habits often go one of two ways –you can’t stomach the thought of eating or you unconsciously eat anything in sight. Weight loss and gain are the consequences, but either way, your energy is negatively affected. Keep fresh fruits and vegetables handy. Nuts, seeds and whole grains are all good foods for a balanced metabolism.
  • Depend on your spouse, significant other or best friend.  This person wants to be your shoulder to lean on, ear to bend, or home grown counselor to talk to and confide in. They will undoubtedly assist with difficult choices and will help to ease internal fears of the future. Don’t keep bad thoughts, hurts and misunderstandings to yourself – they will weigh you down. Be open.
  • Spirituality is a personal thing. Embrace your vulnerability. Hope for peace, wisdom and acceptance. Meditate and find your center. Be calm and stay focused on the care of your children, yourself and your spouse. Be filled with hope.

Kelly Anne Dolan Memorial Fund (KADMF) LogoThis information is happily shared at the request and with the permission of the Kelly Anne Dolan Memorial Fund (KADMF). KADMF, headquartered in Ambler, Pa., advocates for families with seriously ill, physically and cognitively challenged, or severely injured children nationwide through information and education.

The Fund is celebrating its 35th Anniversary in 2011-12. For more information or to donate, please visit http://www.kadmf.org. This information is being shared pro bono. If you find this information helpful feel free to share it with others; even if you don’t personally know a family struggling with this, one of your friends will.

Have you or someone you know been through this? What would you add to this list?

13 comments

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  1. Danielle

    These are really great tips. I think asking for help and accepting help was by far the hardest thing for me and my husband. I had always been VERY independent and never wanted to feel like I couldn’t do it myself, but in that I really couldn’t do it alone. I had another son that I needed help with and one in the hospital. Accepting help sometimes makes you feel weak and you are already feeling weak because you can’t fix your child. I am a full believe though that without help you are NOT weak and you DO need it!

    1. Michael Schmid

      Thank you for your thoughts, Danielle. I’m very sorry for what you went through.You’re right, asking for or accepting help is not a sign of weakness… it’s the right thing to do for ALL involved. This kind of thing, as you said, affects ones other children and ones relationship with a spouse. As much as parents (moms especially) want to believe (and often appear) they are superhuman… we’re not. Thanks again for sharing!

  2. Hank Osborne

    These tips are right on. Our 6 yr old son has a rare genetic deletion (22Q11.2) that has caused numerous heart surgeries, back surgeries, and he frequently gets sick. He currently is battling his 3rd case of pneumonia this year and will have his second surgery of the year next week…if he is well enough. He has never swallowed anything including his own saliva so he has been tube fed since birth. You would not know it to see him play with his three brothers in the yard.

    I want to personally confirm the ones about taking care of yourself. My son had been in the hospital for about eight weeks straight through Thanksgiving and Christmas one year. I landed myself in the ER due to dehydration. I had run myself in the ground trying to take care of everyone else. The same principle that is used on airplanes applies to parents of special needs kids. Be sure to put on your own oxygen mask before assisting others. You can’t help anyone if you are sick in bed yourself.

    You can visit Caden’s Page to learn more about our journey.

    1. Michael Schmid

      I’m so sorry to hear of your son’s health challenges. How’s he doing with the latest round of pneumonia, Hank? Thank you for weighing in on this. It likely helps other parents who think they’re being weak or selfish to care for themselves, too. They are not. I like the way you put it:

      The same principle that is used on airplanes applies to parents of special needs kids. Be sure to put on your own oxygen mask before assisting others. You can’t help anyone if you are sick in bed yourself.

      p.s. I’ve subscribed to your feed and will keep Caden in our prayers.

  3. Shannon

    Great and important information. Thanks for sharing it. And kudos to all the parents that take care of a sick child- and their families. You guys are heroes!

    1. Michael Schmid

      Kudos to all the parents that take care of a sick child- and their families. You guys are heroes!

      Well said, Shannon!

  4. JDaniel4's Mom

    Great tips! Thanks for sharing them!

    1. Michael Schmid

      I was very happy to share them, D. I hope it helps someone.

  5. Ivy

    What great a post and great tips!

    Giving yourself that break in your routine and taking care of your appearance are HUGE! My son developed severe asthma when he was an infant. He was in and out of the hospital weekly. I was still working out of the home at that point, so I felt guilty taking a short break from him when I was home.

    I would go work frazzled with my hair in a ponytail, and the stress of looking bad and feeling bad are enough to break a person.

    Use that need for a short break as a great opportunity to ask for help! It’s good practice.

    1. Michael Schmid

      Thank you, Ivy. When I was approached to share this advice it rang true (though I’ve not been in that situation). Based upon what several of you have said it sounds like good advice. Thank you for sharing. I hope your son is doing well now?

  6. Dana K

    Chris & I split “duties” bedside for Klaw’s hospitalizations. When he wasn’t stationed here but able to fly back on leave for them & now that he’s stationed here again, he will stay nights while I sleep at home & then I’ll stay there during the day. We eat dinner together & then part ways for the night.

    If Chris is able to take leave now that he lives here, especially if it’s a prolonged hospitalization, we split it up every other night at the hospital.

    Having that break of normalcy by sleeping at home can be incredibly beneficial to your state of mind.

    Klaw has VLCADD, which is a fatty-acid oxidation disorder.

    1. Michael Schmid

      I knew from your blog about Klaw’s challenges. It sounds like you two are doing the best you can to create some small sense of normalcy in such a difficult time. I’m glad Chris is stationed there now. I’m going to share an excerpt from your blog that I’d consider an added tip to those listed above, if you don’t mind? You all are in our prayers.

      Finding hope through blogging & Twitter connections is the single greatest thing about social media. Finding these families is like finally seeing a lighthouse when you are lost at sea. Hope.

  7. Health Information

    Having a child with serious illness is not easy. The task of the parents is very complex which needs discipline and determination. But never take your health for granted by giving time for personal health.

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