One day your child is fine and the next day they are not. This is typically how life starts for a family with a child with a chronic illness; the Doctor visits, the constant tests, the needles until there is a diagnosis. Then comes the living. The daily ins and outs. The dealing with this thing that you did not invite into the life of your child or quite frankly yours. A chronic illness is one that does not go away. It is a long-lasting illness that can be controlled but many times not cured. If you know someone who has a child with a chronic illness, the thoughts below may help you as you seek to know how to help them.
Sending a text, a card or a phone call is HUGE! Being a caregiver is tough. We try to make life as normal as possible, knowing that there is no such thing. Reaching out occasionally can change the course of our day for the better. We might not be able to stay on the phone for long or respond immediately but your effort is appreciated.
If you ask us how things are going, respond appropriately when we tell you. Life is not a picnic in our house. TRUST US, we want things to get better. When we tell you the truth, it is great to hear that you are thinking of us and care. Please don’t tell us your stories about so and so. Just tell us you care.
Don’t offer advice unless you are asked. As parents, we have scoured the internet and talked to every person possible to try to help our child. We don’t need you to fix the problem, we have experts for that…we need you to listen and let us talk. (One exception:if you have walked in our shoes, then we desperately want to hear from you.)
If you want to help, offer something specific. If you tell us to “let you know if we need anything,” we are probably not going to call you. If you tell us you are going to go to the store and ask if there anything you could pick up for us, we might take you up on it. Be specific: offers to watch our sick children so we can spend time with our other children are greatly appreciated. Picking up the kids from school or running an errand that is not out of your way is a big help in time of need.
Don’t look at us with pity. We don’t ask for your pity. We want your joy. It means a lot to be around happy people. Help us laugh, help our children laugh. It makes life a lot easier.
We are on a roller coaster that never seems to stop. Some days are good, some days are bad. Some moments are good and the next they are bad. Our child may be running around playing one day and horribly sick the next. Don’t assume we are “all better” because things appeared that way when you saw us last.
Understand what we can and cannot do. It is very frustrating to constantly turn down invitations to things we can’t do. If the child has a bleeding disorder, playing tag is not a good option. Pay attention!!
Understand that sometimes, we can’t deal with your problems. Sometimes, it is all we can do to mentally keep going. We are not trying to be a bad selfish friend, we just cannot handle any more. Getting mad or thinking we are selfish doesn’t help.
Don’t give up on us. Don’t stop inviting us to dinner or to do fun things because we say no. (This goes into the paying attention category…find out if we can’t because we don’t feel good today or we can’t because we really can’t….ever). We want to hang out with you…really. Sometimes we just are not up to it. Help us know that it is ok to say no, you are not going to be offended, you just miss us too!
Recognize that many times a chronic illness is not outwardly visible. Blood disorders, asthma, diabetes, gastroparesis, arthritis…the list is very long. Our children might look fine and you might not understand why we are so stressed. It took a lot of work to help our child look OK today…have compassion on them and us.
Having a sick child can put an incredible strain on the family. It is fine to ask how we are doing as individuals or as a family. It is even better to offer up a date night or some alone time. (I think I already mentioned that!! *grin*) Being able to walk away and be normal for a few hours offers healing.
If our child does not know you well, we will be very uncomfortable leaving them with you We know we need time away, but our children are typically uncomfortable being alone with people they don’t know. They have spent a lot of time in Doctor’s offices and hospitals. Strangers typically cause pain and/or discomfort. Also, as Moms we are afraid to leave our children. If you combine the child’s anxiety and our fears together, many times it is not worth it. (even though the offer was kind)
Understand that we have rearranged our family for this. Many times a parent has given up a job or changed their way of life. As adults, we are struggling to find our place in this crazy new world. Who are we now? Where do we fit? Help us feel valuable. Remind us that we are important not for what we do or did, but for who we are.
Sometimes it is a physical challenge, sometimes it is a mental challenge and a lot of the time it is both. We are tired…. Always.
Living for today really means living for today…this moment. When you don’t know what your next minute holds, you try to appreciate the one you’re in…even if it is bad. We try to be thankful for each moment. Life is fragile and we are faced with that fact often.
Ultimately, living with a child with chronic illness is not a road we would have chosen. We love our child and would do anything to help them feel better. Watching a child suffer is the most heart-wrenching pain a parent can bear. Some of us manage caregiving better than others, but we all have times where we are a wreck. We wonder how we are going to make it another minute, much less another day. Then, as if on cue, we hear that child’s sweet voice and think of their beautiful face and remember that we are here for them and that they need us to be strong. We pick ourselves up, wipe away our tears and smile as we walk into our next moment. Will you walk with us?