I can definitely say parenting with chronic illness is the biggest challenge I have ever faced. I am thankful my son is as wonderful as he is, parenting isn't always easy though he tends to make it seem like it is. I have a number of people tell me they don't know how I do it. A lot of support, plenty of tears, tons of rest and the unconditional love for my child.
I can't be upset at my son who's asking me every few minutes to look at this or hear the same song over and over. It's my duty as a parent to look after him, that alone is a full time job. So is chronic illness. I've begged him to let Mommy rest, I've begged my ex to let me rest because I didn't trust myself to be asleep around my child for so long with him as young as he was. The older he gets, the easier it gets. Especially with him being in school now, 6 hours of the day to myself - it's not as glamorous as it sounds.
Not everyone around me understood what was going on with me, including myself. Chronic fatigue is a tricky thing to understand and predict at first. We definitely didn't fully understand how one day I could have a regular day and the next barely be able to take care of myself, let alone a child. I had many heated arguments with my child's father before we both sort of got used to the whirlwind of my chronic illness.
Others might say you are trying to pawn off your child, you are lazy, etc.. not always the truth, sometimes it's hard to even deal with the lights being on in the room when in pain. I've been there. Sometimes people will use whatever insult they can throw at you and some people are just really judgemental - get them out of your life, they are only toxic to your health.
Don't ever let anyone make you feel like an inadequate parent because of your illness. Even yourself.
It does get easier. Sometimes it'll get even harder. It will pass. That is the whirlwind of chronic illness and life. You will learn to adjust.
You will have good hours and bad hours. They will go up and down and you'll think you are losing your mind at first. It's ok, you are not. I remember losing my mind going through all the medications, side effects, symptoms and doctors. My son was in the terrible twos when I was diagnosed, not only was my untreated postpartum depression running wild but I was introduced to Rheumatoid Arthritis. I have been incredibly lucky with my child, he's always been very well behaved, kind, compassionate and sleeps great at night, even as a baby. Of course that could all change the older he gets. I remember being a teenager.
Sometimes you have to put yourself first. You can't be the parent you need to be when sick. You are treating a severe illness. You are worth it. Guilt is a bitch. I know. You have to take a day off.
You child will not grow up hating you because you couldn't offer them everything as long as you love and support them.
The energy of a toddler and Rheumatoid Arthritis definitely do not match.
It's ok if you have to bring your kid along to doctor appointments but get a sitter for the scary tests. Sometimes I will have him stay at the grandparents or dad's on days I have a big test.
Sometimes the mess can and will have to wait.
Plan a kid free day or two after infusions and/or drug days. They often make you lethargic. Prepare ahead on those days.
Day planners are amazing.
Movie night always wins.
Children are little sponges, be careful with the anger that comes with chronic pain.
It's ok to fall behind on chores. This is why I own so much clothing, even though I hate laundry days.
I taught my son that Mommy often needs quiet time.
Do not compare yourself your situation to others
I often have to explain to him I am spacing out because of my illness and I am not ignoring him, to be patient and just touch me if he's trying to get my attention.
You are an example to your child, teach them to eat healthy - one day they can help prepare food for you. Keep easy to prepare food and snacks handy. If you can't always afford the most healthy snacks, being on disability and these diseases are expensive, it's ok. It's most important that your child is fed, even if for a week or two it has to be the best foods. Sometimes fatigue will get in the way of you being able to prepare an amazing healthy meal, it's ok.
A routine is a great thing, it helps.
Marijuana really helps. I don't drink anymore but if you can tolerate a big glass of wine, do it.
Child locks and friendly packaging are unfriendly to Arthritis.
Ask for help. Don't be embarrassed or ashamed. Screw anyone who makes you feel bad for needing help. Yes that help can be consistent, you are now living with an incurable illness that has a large effect on your life. Everyone around you needs to understand that.
It's ok to be high on marijuana around your kid, don't let anyone shame you for that. It is a medication too. As long as you aren't driving high with them, it just might be a bit hard to get off the couch when they ask for a snack. It however really helps with the pain and the frustrations of chronic illness. Edibles do too. I taught my son it's a medication - because that is exactly what it is for me and he now refers to it as my medicine. I did not start smoking marijuana about 7 months after my diagnosis of RA. Test your tolerance before being around your children if that makes you more comfortable.
When fatigued and my son was young I would explain to him I was ill and needed to rest, please sit on me, watch Netflix cartoons and play on the tablet or on the ground by me. Baby/childproof like hell.
Watch the depression that comes with arthritis and post partum depression, it's nothing to be ashamed of and it is ok to ask for help, be honest how you are feeling. No one is going to judge you it's actually more common thank you think.
Look for friends who you trust and are willing to spend time with your child being active. Put your kids in sports if possible - tiring them out is crucial for your fatigue. It's also important for you to stay active with your illness.
Be a role model, not only to your child but yourself.
My son Jacob was asking about where adults go during the day, I was telling him work. His response to me was "You don't work because you are sick" touched my heart, he was 4 at the time and the fact he could understand that already melted away a lot of guilt and feelings of being a bad mother that being sick can cause.
You are more than your disability, your pain and your suffering. You are the world to your little one(s).