Last summer, when we brought Beckham home from his second hospital stay in June, we were told he only had four to six months to live. This incredibly short timespan kept us focused on every moment spent with him. We had so much to learn and get used to when it came to caring for a terminally ill child. We had new equipment that filled our home, and our days were scheduled by medication doses, constant tube feedings, suctioning around the clock, and weekly doctor appointments. On top of that we were struggling with new nurses that were a far cry from our qualified and trustworthy ICU nurses. Sleep was hard to come by. We were trying to keep our heads above water. The sheer work of caring for Beckham and ourselves, our fear of the future, and fear of germs kept us home day after day, week after week, and eventually month after month.
Over a year later we are still trying to keep our heads above water. Sure, we are now very used to Beckham’s schedule when it comes to 18 hours of continuous gtube feeding, suctioning, medications, and being tethered to his oxygen machine, however, we are still so limited by germs and his fragile immune and cardiovascular system. Beckham is still held 95% of the time that he is awake. He gets mad when we set him in his bean bag chair or propped up in his boppy pillow on the couch. He might last a half hour if we are lucky enough to cook and/or eat a meal, but he gets mad and eventually has a seizure, throws up, or his oxygen saturation drops lower than we are comfortable with. When we leave home, he feels the same way about sitting in his car seat and stroller. We are limited in the distance we can travel by how he can handle the drive. We are also limited by oxygen. At home Beckham has an oxygen concentrator that takes room air and concentrates it to a higher O2 flow. On the go we take oxygen tanks along that each last about two hours. A vacation is on our bucket list, but it is not a luxury we can realistically manage.
When we leave home, we have a mental checklist of things to bring along (oxygen tanks, suction machine, feeding pump, formula, change of clothes or two, medications, tylenol and morphine just in case, diapers, stuffed animals to prop his head up, burp cloths, etc.). We cannot leave home alone with Beckham, two people always have to be in the car with Beckham. If he were to gag on saliva (no, he still doesn’t have a gag reflex, but he can gag/vomit) or throw up, I couldn’t stop in the middle of the highway to suction him. This is one of the biggest limiting factors in our life. We can’t just hop in the car with him and run to the store. It has to be a big, planned outing.
A lot of heavy lifting is involved to leave home. We have a set routine. Beto grabs the oxygen tanks and starts the car. Then, he comes in and carries Beckham, the oxygen tank he is attached to, and his feeding pump to the car. I pack the diaper bag, grab the medications, formula, and suction machine. I usually sit in the front seat while we drive, I get so carsick in the backseat. If Beckham gags I immediately unbuckle, whip around, grab the suction, and hope to catch it before it ends up all over. When we arrive at our destination I get out the 2-piece stroller and put the suction machine, food bag, and diaper bag in the bottom basket. Beto attaches the oxygen tank to the side of the stroller and moves Beckham from the car to the stroller. We use stuffed animals, his “friendys,” to position his head since it flops to the side. By this point we are usually exhausted. Honestly, I am exhausted just writing all of this out.
Our favorite place to bring Beckham is out to eat. The weather is too hot to spend any time outside, but we feel comfortable enough with germs this time of year. Soon enough it will be cold/flu season again, and we will be more limited. Most restaurants can’t accommodate a giant stroller, so we carry Beckham. Beto holds Beckham and wheels the oxygen tank and feeding pump. I grab the diaper bag and suction machine. Beckham can’t sit in a highchair, he simply doesn’t have the head or body control. Beto usually holds him the entire meal. Getting out is worth the work, for the most part. It keeps us sane. We sort of feel normal.
Sometimes it happens right when we walk in the door. Other times we will be halfway through our meal before I realize. The stares. Children cannot help but stare. Even one year olds know that something is wrong, they are always so concerned. Older kids will spend their entire meal looking our way. Adults give us looks of pity or they see us and look away. It always catches me off guard. I am used to our normal. I am used to my baby and all of his gear. I see him the way any mother sees her baby. I am so proud and filled with love for my son. When we leave the comfort of our home, for a brief moment, I see Beckham through the eyes the world sees him with, and I am heartbroken. Different. Weird. Broken. Strange. I realize we don’t fit in.
Maybe I’ve known all along that we don’t fit. Maybe I’ve ignored it because at home, in our bubble, it doesn’t matter. When Beckham was six months old and first placed on hospice I knew he had severe brain damage. I knew exactly what that meant. Since he was still so young, he felt like a normal baby even though he was so functionally limited. Now that he is nearly 20 months old, his differences from other 20-month-olds are so incredibly apparent. I feel it now more than ever. I feel it when I see photos and videos of other kids. I feel it when we go to familiar places and see familiar faces yet feel so out of place. I feel it when we aren’t invited places. I feel it when I can’t hop in the car and go grab a coffee. I feel it when I realize what normal childhood milestones are. I feel it when I look around and realize just how different we are.
Different is not easy. We don’t fit into the common mold for first-time parents, families of three, etc. Some days we just wish for a little bit of normal. Other days we sob our eyes out because we will never have normal as much as we may try. We wish for playdates, brunches, lake days, museum and arboretum trips, dinner with friends, and every normal thing. We hope to be invited. I’m not sure if it is out of concern, fear, or neglect that we aren’t. Including us takes courage. There is a common thread among friends and family and it seems to be fear. Even those that are the very closest to us are afraid to cause us more pain. I have been asked if it is too difficult to be around healthy children? Or, if I will feel sad if I have to decline? Many times people are worried about what to say or not say. This fear keeps us apart. I’ve said it too many times to count… saying the wrong thing is far better than saying nothing at all. Silence is isolating. Speaking up takes courage, and it breaks down walls. (I have a lot more to share about this, but I’ll save it for another post.) Maybe I need to quit waiting around to be invited and do the inviting myself. Who wants to go to dinner? xo
PS: those are medical supplies in the boxes by the door and birthday flowers on my table.