Holding It Together and Falling Apart

The past six weeks have been long. We have faced added stressors from a thunderstorm that took out one of our trees, electricity, and fried our hot water heater. First world problems, I know… We went eight days without hot water, and our electricity is still messed up. The lights fade in and out when we use a couple of appliances at once and getting the electrician back to our house has proved difficult.

We have had insurance issues; Beckham hasn’t had his prescribed formula for two weeks. Our primary insurance’s billing company refuses to bill our secondary insurance for items they don’t cover. The formula provider has officially dropped us. Beckham suffered a reaction to a homeopathic cream for a back spasm which resulted in a nasty, blistered rash all over his back (thank goodness for essential oils that saved the day!).

My body has been struggling under the weight of this long term stress. Don’t be fooled, though we have chosen to make the best of a horrific situation, the stress never leaves our home. Self care is about last on my priority list, but my body is crying out for help. So, we are in the process of finding a new nurse to help with a few daytime hours which will hopefully lighten my load by helping me find time to do laundry, cook a meal, or run an errand. Finding decent nurses in home healthcare has been a struggle for us all along. We have had very bad experiences in the past. We do have two night nurses, now, that we trust. It took us a full year to get a committed nurse for the weekends. Starting the process over for a day nurse is hard.

October 5th marked two years since we first heard of Hypoplastic Left Heart Syndrome (HLHS). It also marked two years of living in a state of constant stress and anxiety. This summer we ate a meal with family at a busy BBQ joint in Deep Ellum. There was loud, live music outside, people everywhere, and busy streets. On our walk back to the car my four year old niece ran out into the street. Her mom yelled to her, but it was too loud to hear. My sister-in-law ran after her, panicked, and grabbed her. Tears ran down both of their faces. The panic my sister-in-law felt in that moment… the stress, the fear, the adrenaline rush… is something I completely relate to. These are feelings that Beto and I have been experiencing for two years. Beckham has been in the middle of a busy street called heart disease and brain damage, and we can’t save him.

Sometimes I mention that I wish my friends would understand some of the things I feel or experience. I don’t want them to actually experience this kind of pain, but I wish they could understand. I wish conversations wouldn’t meet an awkward silence or un-empathetic questions. I wish our hearts would connect as they imagine walking in my shoes. To me, empathy looks like closing your eyes and imagining your baby, your best friend, your partner, your parent… the one you love most… out in that street. Feeling your heart race. Feeling warm, salty tears fall down your face. Feeling it with me. That my dear friend is empathy. Just feeling it with me.

Here are some of the thoughts and emotions I have been feeling on this roller coaster ride… this journey we are on. Sometimes I feel the full gamut of emotions in a single day. Other times I feel good for a while.


I feel lost in all of this. I don’t know how faith fits.

Navigating the unthinkable. Embracing every moment. Holding on with all my might… he’s slipping through my fingers.

Fear. Anxiety.

What do you pray? I don’t.
What do you hope for? A good meal and good night’s rest.

I am surviving. I am suffering long. I am determined. I am strong.

My mind and emotions are stable. Smiles are frequent.

Some days this weight is too much to bare. I need to feel it. I need to face it.
In trusted places I weep.

I am so very weak. I cannot handle this. I cannot keep going… but I must.

My body is broken. Sleep is restless. Hair falling out. Irregular cycle that comes and goes.
Chronic yeast infection. Bacterial infection. Tense shoulders. Hips out of alignment most days. Aching.

Pain, frustration, and overwhelming stress get the best of me. Tears fall into my dinner.
Tears release the burden and cleanse my heart.

Processing. Grieving. Hoping.

Sorrow will not define me.

Holding it together and falling apart.


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October 15, 2014 - 9:54 pm

Katie - I pray for you and your family. I have no idea what you are going through. If there was anyway that I could help I would, even though I don’t know you. I hope in your everyday craziness that you find some moment of relief. I can imagine that it’s hard to come by. I can’t imagine the worry that you have on a daily basis. I’m heading to bed and I will pray that you find rest tonight and over the weekend, pray for a good nurse, pray for better health for you and your husband, and pray for a moment or two of relaxation. In the midst of the hard time you are facing, I hope that you find comfort in those around you.

October 15, 2014 - 11:11 pm

Dawn Carlson - Completely heart-wrenching.

October 16, 2014 - 3:23 am

Jenae Tankersley - From a distance, i’m crying with you. Knowing i don’t fully understand and that my days look very different from yours. My heart aches for you and Beto and what you’re walking through. 2 years. i have no words that can help or fix and i hate that. I walked the streets of Sierra Leone earlier this year and felt incredibly overwhelmed and frustrated with all I saw. I was in a constant state of “this is not right or ok and why aren’t we doing something”… I returned home internally frustrated and questioning so much. My lack of “power” to help with the most basic of human “rights” was a slap in the face to this american mindset. For the first time in my life i realized all the help in the world couldn’t fix the ache of the human hearts I saw. It couldn’t fix limbs that had been cut off, or children who’d lost all family in a war where they were ripped from them. It couldn’t fix the completely survival based thinking that was prevalent everywhere. I was helpless and completely, overwhelmingly frustrated with that fact. My trip lasted 10 short days.
Cliche inspirational quotes and scriptures of encouragement seem almost empty in the face of that frustration. I wonder if they hold the same weight and power if i don’t feel hopeful when i say them. but i know they do. i know He is still leading, He is still faithful and He is still strong. He is still more than enough. And one more reason I know all of this is because of you. You are a beautiful expression of true worship…sacrificial worship, day in and day out. I’m praying over your body right now. Praying for overwhelming peace and rest–in every muscle, in every cell. I don’t know how, but I’m praying for it just the same. Supernatural strength and the more than enough that you need to receive it. Love you guys!

October 16, 2014 - 4:00 am

Devon Shae - Jenae, beautifully said. Lindsey, you and your family are in my prayers.

October 16, 2014 - 6:24 am

Karla Brown - Oh honey, it’s cathartic to fall apart! One can’t imagine or experience the lonely pain of what you’re going through. This is your fight – You, Beto & Beckham’s fight. You don’t have to have faith that you’re doing right…..God has His faith in YOU that you are doing your best! Just know that you have millions honey, millions of people praying over you daily! Draw your strength from us – That little miracle has overcome so many obstacles. Lean on others, borrow our determination, our hope!

October 16, 2014 - 11:52 am

Linda Ashby - Just know when you cannot pray, we are praying for you. Praying for each tomorrow to be better. Love, Linda ❤

October 16, 2014 - 1:38 pm

Tara LaRoche - Lindsey, as I read your words, I cry. Sometimes, as I read your posts, I feel like you are describing my exact feelings and emotions. You have such a way with words. My heart absolutely aches for you and I feel the stress start to build up as I think about the horrible pain you and Beto are carrying with you everyday. It’s paralizing. I am praying for some rest and beautiful moments to help keep you going. And remember, on the days you just can’t seem to make it, SO many people are lifting you up and praying those prayers that you just can’t pray right now….on my knees praying for you today…

October 16, 2014 - 2:30 pm

Norelia Hill - I lost my cousin when she was 5 to a congenital heart defect. The pain my aunt suffered must have been unbearable. I know mine often felt like it. Annie was more a sister to me than a cousin. 16 years have passes and still feels like yesterday. I was felt lost for many years till I watched this video of a friend who did not get to experience the wonderful 5 years we had with Annie. You are so strong and I know the days seem like they will never end. I pray for you, your family, Beckham and all who have had the chance to meet and know him. I pray for many more memories. Thank you for sharing your story with the world. I have been following for a long time and I will continue. I want to share my friends story with you. Please know it is very difficult to watch but it is truly a testimony of faith and love. http://youtu.be/hkrXximFShk

October 28, 2014 - 5:16 am

Karen Beard - Our Heavenly Father NEVER promised that it would be easy……He only PROMISED it WOULD be worth it! <3 Continuing prayers for peace from Kansas. <3

November 3, 2014 - 11:06 pm

Louann Weltman - Dear Lindsey and Beto,
As we continue to pray for you and your family; I wish there was something I could do to fix things.
With everything you go through everyday with Beckham, you handle it with such grace.
Know you are always in our prayers!
God Bless!

November 4, 2014 - 1:59 pm

Jackie Stephens - I am sorry

November 4, 2014 - 6:32 pm

Brenda Gorham - Lindsey & Beto -U r doing an awesome job with your little boy! I cannot even begin to comprehend how totally exhausted u both are! Please know the love and prayers for u are huge!! May GOD’S AMAZING GRACE SUSTAIN U AND HIS PEACE THAT PASSES OUR UNDERSTANDING cover u. We lift up ur families also- such a tough walk! When I look at the photo of u three, I see soooo much LOVE! I cry and ask God to heal ur little Beckham from head to toe, in Jesus name! He is so precious! In such a short (long to all of U) time he has touched so many people! To God be the Glory -U will be blessed for sharing this with the world, touching so many lives . Walking thru hard times are tough, but that’s when there is only one set of footprints, because He carries us- I pray for new mercies and strength for each new day for u all. May the road ahead be full of fun times and may ur needs for rest and good help be met. Always praying …..Live each day to the fullest and nap as much as u can! so wish i was closer to help:( hugs!

November 5, 2014 - 3:49 pm

Barbara Loest - EPIC health care provides excellent services for my severly handicapped great-nephew, Zachary. He has the greatest nurses ever! I would venture to say that his requirements are as complex as Beckham’s. Try them.

December 16, 2014 - 6:31 pm

Laura Croley - I wish your family more peace! I can already see the love is overwhelming and the joy in your eyes in each picture. I feel your emotions so much. My daughter is 9 months old and has been home a short 23 days of her life. I think you are truly wonderful people and the good Lord knew this child would make you stronger! The amount of feelings you share with us shows you are strong, weak, loving, and human. Pray for better days and enjoy the every moment with your beautiful family!

April 2, 2015 - 4:37 pm

Dawn Dodd Prestholt - Praying for peace and strength. ..unless you have a child who is chronically I’ll you DON’T understand!

December 11, 2015 - 7:56 pm

Angela Olivares - Hi. I wanted to share a brief bit of my story and say that I’ve been in similar shoes and your words sound so familiar. Sadly my son lost his battle about a year ago; he had ponto cerebellar hypoplasia. His brain quit growing in utero at about 24 weeks gestation and we had no idea. My son actually looked a bit like Beckham so I feel somehow connected to your situation. Please know that if you ever need someone to cry to or someone to listen I’d love to extend that hand to you.


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 - 2:41 am

Lindsey - Your words inspire so many. Although I’ve never met You, Beto or Beckham I feel a tiny part of your life. You are courageous, even in your darkest hours you find a way to give to us, your readers and family. Thank you for every honest word, for sharing your hardest moments and giving each of us a glimpse into your beautiful world.

“I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me.” Philippians 4:12-13 ESV

God will surely bless you and Beto, for your faithfulness in times good and bad. I will continue to pray for all the days God chooses to bless this world with your sweet boy. May your courage never waiver, and May God bless your lives and your marriage in every difficult and joyous moment with Beckham.
Sending all our love from Michigan xo

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 17, 2014 - 12:18 pm

brittany - Always praying for your beautiful family! Beckham is blessed to have such amazing parents!

August 17, 2014 - 5:33 pm

Natalie - You guys are truly amazing! We constantly are praying for you guys! Happy birthday!

August 17, 2014 - 11:39 pm

Katie lopez - Every time I see a picture of your family I say a prayer for you guys. Thank you for sharing your heart so I can know how to pray for you more specifically. The last 2 photos are so precious.

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 - 1:31 am

taylor - God bless you all. I can not describe the feeling your family has made my heart feel. I love yall. I pray for healing over Beckham. That he gets better with each day that passes. I pray for peace, comfort, and strength over you. Even more than what you already have. Beckham is the sweetest thing that I have ever seen. So so sweet.. Yall have touched my heart tremendously. Keep speaking life over him, anointing, and praying. Yall are an inspiration.. I wish I knew you personally. You have such a sweet baby boy. I am praying. Praying. Praying.

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!

August 18, 2014 - 9:02 am

jackie stephens - Beckham is different… and BLESSED. Blessed to have such incredible parents that love him well every day – getting the most of out of each day, realizing it could be their last. I wonder how many parents go through the day without realizing it could be their last day with their precious gifts from God? I know I did. And I am so sorry for all the times I didn’t stop and stroke their hair or rub their back or just breathe in their sweetness.

I know you’re tired and I know you are weary every day. But you are amazing parents and I am blessed to have “known” you and your precious angel. Still praying

August 18, 2014 - 9:05 pm

Maryanne - Wow, I was thinking the same thing, I didn’t realize Beckham had grown so much. He’s tall !
I have to agree 100%, you are a great writer. You describe these things to a tee. I met a family with special needs child from accidental strangulation, they get so very angry from the stares in public. People don’t realize what they are doing when they stare or show such pity. These folks say they don’t want pity, and hold out hope for continued progress: though slow. thank-you so much for sharing your life with us.
We all try and put ourselves in your circumstances and how would we do it ?
Very few people could cope with all this. that might be part of why people stare, puzzled thinking what if this happened to be their life., to their precious child.

August 24, 2014 - 1:40 am

Anonymous - My heart breaks for you guys. Thank you for being so open and honest. We would totally go out with you guys however we live in MI. Please know that my thought and prayers are with you. Please give your little Beckham a big kiss and hug from the Hossler Family.

August 24, 2014 - 7:54 am

Sohailah - Thank you for sharing. I guess I’m confused – why wouldn’t friends want to go to dinner? If the three of you can sit at a table in a restaurant, couldn’t others join you? I am so sorry that fear is trapping people around you. (Have you gone out with friends since this post? I know it’s only been a week, but I’m hoping. 🙂 ) I know people are allowed into your house because your parents come down. SO, could a friend come on over while he’s napping? And bring coffee? Am I gonna offend everyone on the planet if I Suggest you need some new friends? Where do you live again? Dallas area? I’m sure I know some cool people there. 🙂 And I know people love you, because I remember that amazing “auction gig” – but it would be terrifically difficult for me to not have socialization… ( I sound like I’m three) This is my new prayer for you. BTW – I’m a friend of your moms from the older days of blogging – and she and I have never met either. But I HAVE met Susan Everett Joyce -and she’s met your mom. (I’m trying to legitimize myself ,,, :))

September 9, 2014 - 5:44 pm

Pam - You have such perspective and a wonderful way of sharing your thoughts. I’m a friend of your mom’s from old blogging days as well. I wish I lived near you to invite y’all over for some of my hubby’s good Mexican cooking! and Pan Bimbo! 🙂

September 17, 2014 - 7:46 pm

Amy Simpson - Could someone associated with this site please contact my company please read message left In the contact us form

September 22, 2014 - 8:10 pm

Chris Sheets - My son bought a Beats for Beckham shirt when you 1st introduced them! Our son is 32 years of age,born with Spina Bifida and challenged physically every day of his life. He just got home from a 2 month stay in the hospital,he is a fighter… He thinks of Beckham every time he wears his shirt..Your family will remain in our prayers and thoughts,life is not something our home takes for granted


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.


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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