DIFFERENT

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.:)

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August 17, 2014 - 4:47 am

Callie-Jacob Washer - those are the sweetest cheeks I have ever seen!

August 17, 2014 - 4:52 am

Shana Olson-Laake - He’s grown so much. <3 Your honesty is humbling.

August 17, 2014 - 4:53 am

Carol Blaylock - Lindsey I always wonder when I see your posts what I could possibly do to help you. I pray for you a lot. The women at Pampering and Hope ministry for women in crisis (crisis situations that have affected them emotionally and/or physically) pray for you also.

August 17, 2014 - 4:58 am

Kathy Wright - You all love so beautifully!

August 17, 2014 - 5:24 am

Glenda D. Ray Servin - <3 <3 <3 one for each one of you.

August 17, 2014 - 5:32 am

Joanne Smit Teesdale - You are such a precious family. My heart goes out to you and you are continually in my thoughts. Praying your “normal” is not seen as so abnormal by others.

August 17, 2014 - 5:40 am

Cheri Lutke - Your story and journey touch me so, you love and write and share so beautifully. Beckham is beautiful. I know we are not close and our only connection is Amanda Iasci, childhood friend for a short time…( I remember dropping her off at your house to play!), and Barb Bosch is a friend of your Mom’s, but people all over the country pray for your family, and want to pray and walk along in any tiny way we can. Your beautiful detailed writing helps us to specifically pray. Doing that right now. God Bless.

August 17, 2014 - 5:41 am

Cheri Lutke - Beautiful pictures too…

August 17, 2014 - 9:06 am

Brenda - Linds & Beto- u guys are such a special family! Oh how u truly reflect Jesus!
U r precious in His sight! Praying for daily grace & mercies . Wish we lived closer to help:(. I love Beckham and so wish I could hold him! Please sing Jesus loves me…in his ear. Keep on keeping on, u are an inspiration. Praying your darkest days will be full of joy. Enjoy ur sisters and mom and dad- what a dear dear family!
Life can be hard, but God is faithful! Love and hugs, Brenda

August 17, 2014 - 9:27 am

Rachel DeBell - I want to go to dinner!! Or just come over and bring you dinner or coffee! We haven’t gotten to know each other well, and I’d love the chance to remedy that! If you are up for it, I am! Send me your number and we’ll make it happen! Seriously, it would be so fun!

August 17, 2014 - 11:54 am

Susan Errett Joyce - You are loved and cared about, even when it cannot be expressed correctly.

August 18, 2014 - 12:29 am

Kierra Irvine - If we lived closer – I would totally go for dinner! You hit the nail on the head with “saying the wrong thing is far better than saying nothing at all. Silence is isolating”. Hopefully with you speaking up (which is very courageous ) will help those close to you not be afraid to reach out. xo

August 18, 2014 - 2:04 am

Jennifer Banaszak - Thoughts and prayers for you all! A day don’t go by that I don’t think about you and you’re family!

REALITY

My reality. Cords, machines, dirty clothes and burp cloths covered in vomit, syringes, and an angry, grunting baby. See those fists in the air? That means he’s in pain, frustrated, or mad! He hasn’t stopped grunting all week. This is the first I’ve put him down all day. I don’t get breaks. I hold Beckham all day, everyday. I’m currently on day four of having him awake 9-9, and Beto is working 7-5. I go and go and go… but some days frustration gets the best of me. There is no outlet or vacation. Tomorrow I must wake up and care of my sick baby all over again.

Don’t tell me these are ‘normal mom’ feelings. They aren’t!? This is a frustration so much greater. My baby is broken. He can’t do anything (read: can’t eat, or swallow, or smile… he can’t tell me what he needs or how he hurts), and there isn’t anything I can do to help him. He is suffering, we are suffering. I post the prettiest photos I can of our messy life on hospice. I share photos of the way I see my baby, perfect and loved. Somedays I need to break that mold and let the world in on this secret. We’re broken and hurting. Things aren’t getting better. The pain isn’t going to magically go away. I want this reality Beto and I are living to be understood. We have been 95% housebound for 19 months. Reality is that our life is on hold, and we feel the effects of it almost daily. (Orignally posted to Instagram)

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August 13, 2014 - 5:13 am

MaryanneandBill McQuarrie - Thanks for being so incredibly honest. I’m sure everyone wishes they could do something to help. You have risen to an amazing level of caring for Beckham. I guess I wanted to believe you had an army of helpers, obviously not so. The strength you have to keep going is nothing short of supernatural, I believe God is upholding you as well as crying along with you. Praying. Hope the new nurses can relieve some of the work a few hours a day. Beckham has survived so much longer than anyone predicted, his inner strength is incredible also. Glad to hear he enjoys the sing-a-long, some joy in life for him. I know you need your own personal time to recover each day. Love must be keeping you going each moment to moment.

August 13, 2014 - 1:35 pm

Shannon Star - This post is so perfect and so honest. For a much shorter time than you I lived a life similar to this, and I lived in denial. I lived in a constant state of survival. I often look back and wonder what I would have learned if I had truly felt it all. I absolutely love that you are so transparent. Not only do you feel it and learn but we have the opportunity to as well. That is truly a gift you give us and I am so grateful for it. Thank you for sharing your vulnerability, thank you for sharing your strength, thank you for sharing precious Beckham with the world. God is so good and I continue to pray for peace, and help, and healing for you and your family.

August 16, 2014 - 2:00 pm

Janet N Todd Weber - Peace surround and uphold you. Peace to know that there is no guilt or shame or betrayal in feeling this way. You love him fully, giving completeness to what is incomplete. I am sorry for your anguish.

RUNNING

Our pain is real. It never goes away. We have found ways to deny it, numb it, avoid it, and live with it. Don’t let these smiles or our feeds full of pretty photos fool you. Our daily life is filled with pain and suffering – not only for us, but especially for Beckham. He has been suffering for so long. Our life completely stopped 18 months ago, we have been at a standstill while the world moves on around us. There are days when we feel hopeless and alone. Then, there are days we feel that somehow we can manage. We are exhausted to the core, but we keep fighting. There is only one way through this. We can’t skip the pain, we have to walk right through it. We have to feel it and know it.

We’ve been running a few nights a week for the past month or so. I have never been a runner, this is a big stretch for me. I’m getting better at it. When I really hit my stride I focus on pushing through the pain. I breathe in trust and exhale surrender. I surrender to the pain and trust the process. Running and my daily life mirror each other. When I think I have nothing left, those are the moments to keep pushing. Those are the moments when I can experience the most growth as an athlete and a person. I believe there is beauty beyond the pain. I just have to get there. (Originally posted to Instagram)

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CARTOONS

Y’all, Beckham sat in his chair for an hour this morning! It’s a miracle!!! His sats were 80 too!!! He doesn’t watch the screen, but he loves the sing-a-long music. (originally posted to instagram)

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August 13, 2014 - 5:18 am

Kendall Celesta Burley - Yeah, mama, an hour! Sweet baby. My baby girl is almost eight months old and never let’s me put her down. She screams and screams if I do. She also still wakes three times a night. I know my life is not comparable to yours but I do know the joy of a little victory like when your baby will let you put them down. I don’t think Macy has been put down for longer then 20 minutes since she was born unless she is sleeping. It’s rough.