BY ROBIN DIX
As a mom, I know that a fair amount of guilt occurs when you can’t attend your son’s soccer games or your daughter’s ballet recital. While you want to be the best mom for your children, fibromyalgia puts a real crimp in your desire to always be there for your kids. Let’s look at some ways to set the guilt aside and be the mom you want within the limitations that you now have.
If you can’t attend a school or sporting event, have someone record it for you and then watch it together with your children. Show your child how proud you are of him or her, and enjoy the moment together. I know it’s not the same as being there, but at least you’re creating a memory together.
You need to get rid of the guilt that comes from that word “should.” I know that moms are really good at feeling guilty, and FM exacerbates that. I “should” be able to make cookies for that bake sale. I “should” be able to help chaperone that field trip. I “should” be able to take my kids to the park, on a picnic, camping, skiing, or to that coveted birthday party. Throw your “shoulds” where they belong: in the trash.
Explain to your child why you can’t do a particular activity, but also let them know you will arrange for someone else to do it and that you can’t wait to hear all about it. If fibro symptoms have you confined to the bed or sofa, perhaps you can read to your child, have them do homework near you so you can help if needed (or a younger child color while you watch), or enjoy a movie or favorite show together. Your child needs to know without a doubt that they are loved and that you enjoy being with them.
Make sure your child understands that although you are sick, it’s not a sickness you will die from. Make sure they know it’s not because of them; they did nothing to cause it. Encourage them to enjoy their childhood to the fullest. They do not need to stay home just because you do. Remind them from time to time that it’s not their job to take care of you.
If you’re only able to attend part of an event, ask your child about the most important time to go. If it’s an indoor event, bring a seat cushion or whatever you need to be as comfortable as possible. If it’s an outdoor event, bring a comfy chair, sunscreen, and a bottle of water. Ask your child to fill in the details you might have missed because you had to leave early. Don’t hesitate to create a team of family and friends who are willing to fill in for you, even at the last minute. That’s an important detail because of fibromyalgia’s unpredictability.
Keep a list of activities that you feel capable of doing with your child. When you’re feeling up to it, let them choose one to do together. These activities could include getting an ice cream, going to the movies, taking a bike ride or going to the park. Make the list together and number each activity with 1, 2 and 3. A “1” means you have enough energy for the activity, while 3 means it’s something you can still do even if it’s not a great day physically.
Participate in groups available on fibromyalgia message boards. Create or join a group, such as Mommies Fighting Fibro on Facebook. Talking with other moms who understand is really liberating. They may shre ideas that you can use and experiences that you can relate to. You may even make new friends.
Please remember that your children love you and they understand more than we give them credit for sometimes. Keep the lines of communication open and try to listen with your heart and not take their frustrations personally. You ARE a good mom doing the best you can!
What It’s Like Parenting With Fibro
I am sure every parent out there can agree raising children is one of the most wonderful adventures you will go on, and also the toughest job you will ever have. Add a chronic illness to that and the difficulty increases tenfold. But being a parent and suffering from fibromyalgia can also bring a lot of blessings and joy.
As the mother of a busy, active almost 2-year-old son, I have discovered a few things that make life a little bit easier for us. Of course, this has mostly been through trial and error, but that’s what parenting is all about, right?
1. Accept Imperfection
This covers a lot of things. You will not be a perfect parent, you will not have a perfect child. Your house will not be perfect, your outfits and the baby’s outfits will not be perfect. What you eat and what you feed your baby will not be perfect.
If you’re anything like me, while pregnant you have this image in your mind of exactly what kind of parent you will be and how life will go. But you quickly learn things rarely go the way you think they will. This is especially true when you have a chronic illness that changes from one day to another — even one hour to the next.
There are going to be ups and downs, good days and bad days. Being willing to embrace the craziness while trying your best will help you get through the day without constant disappointment.
And just in case you think all the other moms out there have it all together, they don’t. Every single one of us is struggling to do the best we can for our child within our circumstances.
2. On Good Days, Focus on Your Children
There are plenty of days I physically cannot get up and play with my son. So on the days I am feeling better I try to make sure I spend some quality time doing something fun with him, even if it’s only for a few minutes at a time.
If it’s nice out we go out for a walk or play in the yard. If the weather is not good we stay in and play with toys, we kick or throw a ball around, we dance, we chase each other around the house. We also might go out for a trip to the library.
On days I can’t do much I try to make sure to still spend time with him reading or coloring — easy and low key activities I can handle. I will also sometimes sit and throw the ball back and forth with him. It is minimal effort on my part but he has a blast and is still getting out energy, having to be the one to run get the ball whenever one of us drops it.
3. Explain Why You Need to Rest
Children are much smarter than most of us give them credit for. Be up front and explain, depending on their age, why you can’t go outside and play or why you aren’t able to play as long as they would like.
With my son I simply tell him, “Mom doesn’t feel good, I need to sit (or lie) down right now.” I explain to him that I would like to play with him, but I need to sit. I then offer to do something with him that can be done on the couch.
I have found most of the time he responds well and is okay with it. It sometimes amazes me at how understanding and compassionate he can be.
But there are times when he gets upset and cries, pulling on my hand trying to get me to come with him. It breaks my heart to say no, but I know if I push myself too hard I will end up even worse and will be unable to care for him.
4. Focus on What Is Most Important
There will days when you barely have the strength to stand up for more than a few minutes at a time. On these days, decide what should come first for you and your child.
The things that they need most are food, diapers/potty training depending on their age, and nap time. These are essential for a happy, healthy child. And the happier your baby is the happier you will be.
The things you need most are food, medications, supplements and rest. Your needs are equally as important as your child’s. As a parent your first instinct may be to put all of your time and energy into your child, but this will lead to you being completely burned out without anything left to give. That will not be beneficial for anyone involved!
5. Play up Your Child’s Strengths
Every child is an individual with their own strengths and weaknesses. I have watched my son and found that he is independent, he likes having a say in everything, he likes helping, and he likes being praised for his efforts.
So to help our day go just a bit more smoothly, I have learned to allow him a measure of independence whenever possible. I give him choices in what he wears, eats, plays with, reads, watches on TV — even which bowl, plate and cup he uses. They may seem like little things to me, but they make him happy and things go smoother.
I ask him to be my big helper and pick up toys, throw away trash, or put dishes in the sink. He can be a very big help to me, but more importantly it makes him happy and feel good about himself. I will ask him bring me small items he is able to carry.
One day I asked him to bring me a blanket, but he wasn’t sure what I was talking about. I got up, showed him the blankets, and where we keep them. Since then he will at times bring me the blanket on his own and help me cover up.
The smile beaming on his face brings me so much joy! I make sure to offer lots of praise every time he does what I ask. And in case I forget, he reminds me by showing me he did it and then clapping for himself.
6. Accept Help
This has been a challenge for me, as part of my image of what motherhood would be like was spending all day, every day with my son — I would be the one teaching him, training him, playing with him. Passing him off to someone else was not part of my perfect scenario. My husband has a decent job that allows me to stay at home, so I genuinely thought I was all set for my dream life.
But as I mentioned before, reality sets in hard once you actually become a parent. Babies and children are harder to care for than you ever knew, and even good days have potential to drain you and leave you exhausted beyond belief. So if someone offers to help out, take the help.
What if no one offers? Then ask. Reach out to family or friends and see if they can occasionally take your child for a few hours for some uninterrupted rest or to get necessary housework or errands done. If there is no one available to help out, you may be able to find a daycare or other childcare professional that can take care of your kids once or twice a week.
This may be difficult, or even a little scary for you, but your health and sanity is vital for the health and happiness of the whole entire family and it should be a priority!
Being a mom with fibromyalgia can bring extra challenges, but it offers just as many blessings and benefits. It may take some time, but find what works best for your family. Remember to enjoy your children while they are still little because the hardest part of parenthood is how quickly they grow up!