Surviving Bedrest and Being Homebound With Medically Fragile Children

Hi all,

I had a wonderful comment on one of my other posts regarding what I would recommend for parents who have medical challenges or for parents of micro-preemies who with the flu session and Winter need to stay home for several Winter seasons in a row.

It really is challenging to get a good mindset about it all.   One important thing I would like to say right off the bat is that this is a time to shore up your own inner work, your own prayer and meditation life, your own personal development.  These situations can really push one to grow.

 I was on bedrest with my second child, and it was one of the most challenging experiences of my whole life (because as many of you know I am a rather busy little soul).  However, I think I would handle it much, much better today. There is a really good thread here over at the Berkeley Parents Network  regarding bedrest, does it really work and is it worth it, how to handle it, etc:   http://parents.berkeley.edu/advice/pregnancy/bedrest.html

There is an organization devoted to mothers experiencing bedrest and high-risk, complicated pregnancies here: http://www.sidelines.org/

I think one of the main things with bedrest is to have people available to talk to who can understand your feelings.  If you are on bedrest with an older child, I think it can quickly dissolve into the fact that you cannot mother your older child the way you want, and you feel as if you are failing the baby inside of you as well.  If you have multiple older children, it also the sheer logistics of caring for everyone, being stretched as a couple, perhaps having family members come and stay for weeks on end (which can be challenging).  There is a lot to think about and plan, so I highly suggest those above links.

As far as being homebound with children who are medically fragile for the Winter, I do understand how hard this can be for parents!  It seems especially difficult  when one has  to do this for the second Winter season in a row after having some freedom in  the Spring and Summer.  For many parents, it was hard enough to slow down for the first Winter season! 

I would invite you, though, to close your eyes and imagine your little micro-preemie or medically fragile child as healthy and whole due to staying home.  Imagine them thriving due to a healthy rhythm, lots of rest and sleep and time to just be. 

That being said, here are a few suggestions:

  • Every family dealing with a second season of isolation due to RSV season has their own way of doing things – some allow family members to visit, some have their child avoid contact with children who are in day care, some avoid indoor places and only go to outdoor places.   Some are on complete and utter “lock-down” at home.   I think it is very important to dialogue with your health care team as to what is right for your individual child and to decide as a family how you will handle this.  I think it also helps to know how many cases of RSV are out there in your own state, you can check here:  http://www.cdc.gov/surveillance/nrevss/rsv/state.html
  • Try to have a rhythm of when you might bundle up and go outside if that is a possibility, even if it is just to walk around your own yard, when to do finger plays, when to do some work around the house, rest and sleep times, bodily care.  This post may actually assist you:  http://theparentingpassageway.com/2010/01/06/waldorf-in-the-home-with-the-one-and-two-year-old/  Rhythm is especially important for children who were premature as this helps the child’s sense of balance in life and flexibility.
  • The entire focus of the day should not be hovering over your small child anxiously….the focus should be in creating a warm, peaceful, home with peaceful mother hen energy where you as the parent are setting the tone of your home.  You have important work to do in your home that your child can help with and imitate.  You have more to do than just sitting there looking at your child.  This will help their development more than anything!
  • Think about how to nourish the caregiver.  When can Mommy go out on her own to run errands?  How about something you enjoy doing that you could do at night once your wee one is asleep? 
  • Do you have the support of your local place of worship?  Do they know what you are experiencing?  Can they be of support to you? 
  • Do you have anyone locally you can get support from either in-person or on the phone?  I have heard of some parents of micro-preemies meeting up on meetup.com or the like…perhaps over the Winter, one could not meet in person but one could keep in touch and support each other over the phone.
  • Who else could help with  running errands for you or could you order things on-line?  What is your plan if you have a traveling spouse or your child does actually get sick?  Do you have some meals frozen?
  • What can you do to experience nature indoors if you cannot go out?  Can you set up bird feeders, can you have a fish tank, can you start a potted herb garden or plant bulbs?
  • Depending upon the age of your child, can you have lots of holiday craft supplies on hand?  Music and songs to sing and learn? 
  • What about the child’s gross motor abilities?  Can you have an under the bed box full of sand and sand toys and put a tarp under it?  Water play?  Can you hang a swing somewhere? 

These are just a few suggestions, take what resonates with you.  Also, if you are a mother who has survived bedrest or staying in a season, please leave your ideas and suggestions for other mothers below.  You could be a real blessing to someone today!

Love your children and live big,

Carrie

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6 thoughts on “Surviving Bedrest and Being Homebound With Medically Fragile Children

  1. Wonderful ideas!

    I have a son (now turning 6) with severe asthma and we cannot go out into crowds – especially indoors or places with groups of children during the winter since even a cold virus lands him in the hospital. So we have been doing this for several years now – it is a little harder as the boys get older, but my asthma boy also understands ‘why’ more at this age, and remembers the last ER visit and how he felt. We have rituals and special things that come out when the weather gets cold – so we actually look forward to our winters! :)

  2. Great post! We had a full winter lock-down 2 winters ago for 3mths while my 6yr old was immune-compromised. I didn’t find it too hard as we tried to go into it with joy and embracing all the good things that we’d be able to do. Interestingly, afterwards, people around us were saying what a hard, cold winter it was – and we had honestly not noticed! It was so nice to just go-with-it at home. I think other people found it hard to imagine that we could possibly do that and were skeptical about how the kids would deal with it – but they handled it just fine (I think a lot was because our attitude wasn’t full of dread). What I did find important for me was to still have my friends on the end of the phone to chat to a couple of times a week. That really helped me still feel in touch with the rest of the world (I also kept my outings limited so I wouldn’t catch anything and bring it home, DH was on strict orders for hygiene and hand washing since he works in retail). We made it through without a sniffle and the kids weren’t left socially inept at the end either lol.

  3. ….Rhythm….

    How do I create this? I have been living spontaneously since college and married a guy who has been living even longer with this (except for going to work, even his work is traveling from ‘incident to incident’!)

    Thanks,
    Michele

    • Hi Michele, You can scroll back just a few screens to see the “Back to Basics” post on rhythm, but also check in the category cloud entitled “Rhythm” and find all the posts on this subject there.
      Many blessings,
      Carrie

  4. Heidi Als is a preemie researcher at Boston Childrens Hospital. She suggested that we look into Waldorf methods for working with our daughter. I don’t know if she would recommend it for everyone but one element of Waldorf that really helped us is to mark the seasons of the year with small festivals at home. While we had the time, my husband and I talked about the type of family culture that we were raised with and what kind we wanted for our family. I now find I really enjoy marking the year with small festivals and the children look forward to each one. There are common Waldorf festivals based on the Christian calendar but just about every culture has their own (and across cultures, many festivals have similarities). We mark the seasons with music, activities, a small tabletop display at home, seasonal artwork and special meals.

    I know it seems odd perhaps to start this with a baby but I found that they do grow quickly and then they remember these markers of the year and they start to learn the rhythm of the year. Looking over the past few years, my children are 5 and 8, I find that it gives the children a sense of order and predictability, which they find very comforting. The first couple of years were awkward for me because several of the Waldorf festivals are German and Scandinavian traditions that were new to me, but each year they have become more familiar and now I can’t imagine not having them. I grew up celebrating birthdays, Halloween, Thanksgiving, Christmas, Valentine’s day, Easter and July 4th and then Waldorf adds several more. There are many lists and books for celebrating more festivals but it’s probably best to look to your own culture or church first and see if there are festivals that have been forgotten.

    Looking over our 8 years, since our daughter was born, I have tried to make our home as nurturing as possible. It is hard, and there are times that the festivals have been a lot of work (as the children get older :) but I find it has a sustaining quality to it. Even when we are having a hard time as a family, celebrating a little festival can be a reminder to forget daily troubles, because it’s time to celebrate! We made it around the sun one more time!

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