Miss you!

Miss you! The empty spot at the table.

As we get ready to sit around the table the mood should be jolly. This is Christmas right?!? But this year, it is different. There is an empty seat. Several days ago, my beloved Grandfather passed on. It feels wrong to celebrate during a time of mourning. How is it even possible? Every place we walk, everywhere we look, there are memories; once reassuring, now haunting. No more hugs, no more laughs, no more sarcastic jokes or grumpy complaints. No more of the things we hated or the things we loved. No more.

It is my job to set the table for the family. Every year, we sit in the same seats in my grandfather’s home. Should I set a plate in his spot, even though I know no one will be eating there? Should I leave it empty? What should I do with the empty spot? I work my way around the table, carefully placing each setting. I contemplate how I should have prepared better. I should have planned for this moment. What goes in his spot? Perhaps something to honor him but I have no idea what would that be? A bucket of fried chicken that he always made sure we had at each celebration? A picture of him laughing? Some fresh oranges from his favorite tree in the grove? I move on from my thoughts and busy myself with different preparation chores.  Somehow, we are all moving forward. Who will say the prayer for the meal now? I suppose it will be my Dad but I have not asked. My grandmother seems amazingly strong…almost relieved that the suffering is over. She and my Mom busy themselves in the kitchen. It is a good distraction, but at some point soon we will be forced to sit at the table and recognize the empty spot.

More family arrives, we hug. Joy mixed with sorrow. Grief mixed with acceptance. Understanding that we are all in this together. We all have memories we carry with us and we are seeking to reconcile our need with normalcy with an understanding that our beloved one had suffered so much and was ready to move on. We each seek to deal with our own personal heartbreak.

The time arrives. We approach the table and sit. The empty spot remains. We look at one another, at the empty seat and close our eyes. We listen to a new person lead us in prayer. We are thankful for this time and for each other. We are grieved and know that this holiday is the first of many. Things will never be the same, but that is life right? We are all here for only a few moments.

We best honor our loved ones by continuing on. It is perfectly acceptable to grieve. The loss never leaves us, but we remember them by doing the things they loved. For my grandfather, we make sure there is always a bucket of fried chicken on the table. (or if the chicken placed is closed, we mention it) As time goes on, we begin to be able to laugh a little more. We begin to celebrate the memories instead of mourning them so much. There will be many empty spots at the table over the years. It is hard to face the empty spot, but we must.

As the holidays draw near, know that if you are facing an empty spot for the first time this year, my heart is with you. May you find the strength to enjoy the friends and family around you. Face life. Own it. I assure you, no one that loved you, wants you to stop living. It is hard…very, very hard. The closer you are with someone the harder it is to face the holiday.  Don’t stop living. You are important to others.

May your holiday season be full of love for those here and love for those who have passed away. May you make many new memories to accompany the old ones.

 

 

 

jeffdOne 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?