Yesterday I took David to the Gastroenterologist {GI for reflux, etc} for a regular check up. As we started to discuss the daily pain David endures with reflux, I could see concern on the doctor’s face.
On an average day, David has between 30 minutes-one hour of pain. And it’s acute pain. On the pediatric pain scale, it’s a ten–he arches, screams and he’s inconsolable. It’s heartbreaking and he’s a troooper. Soon after a painful episode he’s happy and smiling and playful again.
Our GI doctor was concerned with the pain level and frequency. He wants to run some tests {endoscopy and Ph probe} in the next couple weeks to evaluate David’s current state of health and the severity of the reflux. For the endoscopy, David will be under general anesthesia–which terrifies me! But then the doctor and I started to discuss what the tests my reveal and how we would deal with potential issues. More surgeries, a g-tube and other possibilities were discussed. And that’s where I start to freak out. I let my mind wander to the ‘what if’s’. I’m aware how NOT in control I am. I don’t know the future. I have unanswered questions. I want David to be happy and pain-free. I want David to be healthy. And a lot of the time he is healthy–but in situations like this, I’m reminded that David’s body is quirky and things don’t work quite right. Some of them are small things, some are big things.
And I feel my heart breaking. It’s hard to see your baby hurt. It’s scary to face the unknown.
So today, I’m reminding myself about the things I know are true.
1. There is hope.
2 Corinthians 4:16-18 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
2. God cares.
Psalm 147:3 God heals the brokenhearted and bandages their wounds.
3. Today, this moment is beautiful.
Matthew 6:34 Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.
Are you struggling with a broken heart? Share it with me! I am so grateful for the ways you come alongside me and love my little family. I want to journey with you too!
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my broken heart lets the sunlight of the spirit shine through. over the weekend, another CP kid passed away from pneumonia, and I was struck with the thought of developmental charts. I threw mine away when my daughter was 2, and knew she would develop at her own pace. But this death put me in mind of all the parents I know whose children never reach most milestones, who need to be nurses as well as all the other hats I wear (therapist, advocate, lawyer, etc.). Sharing the journey with others is so important – thanks for sharing yours.
praying for you and your family. i agree with gina…the scriptures you posted are truly powerful thank you for sharing.
My son had the endoscopy and ph probe when he was 6. He had been suffering from long, painful reflux episodes. The hardest part of the ph probe for him was that he was very sleepy for several hours after with little appetite, but part of the process for 24 hours after placing the probe is that he had to eat so that it can accurately process what is causing the reflux episodes. We took our gastroenterologists suggestion to do the Nissen Fundoplication surgery to prevent acid reflux episodes. It has been very successful in preventing acid from entering the esophagus (1.5 years post op now). My son also suffered from tummy pain due to a birth defect called intestinal malrotation and had the LADD’s procedure done when he was 5 to correct that.
Brokenness and pain is something that is running rampant through many friends and family at the moment. Although I’m not personally affected, it is awful to watch someone hurt and not be able to help. I want absorb their pain, if only for a moment, so they can catch their breath. In the end all I can do is pray and encourage them press into the Lord. He, in His way, can absorb their pain as no one else can. Thank you for sharing your heart and these verses. Praying answers can be found for David and that his pain can be managed soon!
Lisa,
Sending prayers and positive thoughts for David. The scriptures you posted are so powerful. Thank you for sharing. Hoping all goes well for David! ((hugs))
Awwwww Lisa…..I feel your pain and worry. Our son is 20, but was diagnosed with IBD (inflammatory bowel disease)…….Ulcerative Colitis to be exact. This means an inflamed colon….stomach aches….horrible flares which bring on weight loss….uncontrolled bowels…vomiting……ugh it’s awful!!!!!! He was diagnosed at 15 years old and it’s been a struggle ever since. I have become a overly worried mother….full of panic attacks….anxiety filled days and nights…..becoming a hypochondriac…..all these things happened when our son got sick…..it is the worst feeling to think “will he be okay today?”…..it’ a 24/7 thing. I’m sure I understand a lot of your panic. You are a great mom to David….and for sure he feels that love. I hope the doctors can get him better…..we don’t want our kids to have more procedures or medicines, but sometimes we have no choice. My son (Jake) is on Humira….we didn’t want him to have to go on this medicine because it is so strong with sometimes bad side affects….but other meds had failed so we didn’t have a choice……so hopefully it can get him stable. So much tress!! I seriously think I need therapy!!! I am not ashamed to admit that….I have my husband to keep me focused and he tries to keep calm, but sometimes help needs to come from somewhere else. My heart is with you Lisa…..and David. He’ll be in my prayers with my Jake. Hope our boys can find relief in their health issues!! <3 <3
Hi Lisa honey, I’m sending you huge heartfelt hugs re David. I can only imagine how you will be feeling. You are such a special family and I know because of that you will find the strength to deal with whatever has to be done re David’s reflux. Bless his heart, he is such a trooper! Much love and hugs from NZ.. and THANK YOU because you have reminded me that my problems are truly tiny ones in the grand scheme of things!! xxx
The Lord is near to the brokenhearted and He does care even though we are helpless. My son too faced these issues and my worst fears were faced. He had a g tube for years and it helped tremendously even though the initial pain and grief of that decision was so difficult. I love the verses you shared because they are so dear and close to my heart. My son had a progressive disorder and he went to heaven in September of 2012. After almost 8 years of loving, holding and caring for him, He received complete healing in heaven, but left us aching. I must rely upon The Lord to help our family through each moment of each day and He is faithful. Heaven is so sweet and I can’t wait! Praying for you all and sending my love ❤️
Lisa, In the Lord’s prayer we ask for this day, our daily bread. Most folks translate that in different ways but I feel like God sustains us one day at a time “this day” and gives us all we need to sustain “bread” us in this day. Daily bread covers a multitude of blessings that you and David need for “this day”. His grace “Gods-Riches-At-Christ’s-Expense is sufficient for you and your sweet family this day, one day at a time. That is part of our hope. Peace and Blessings, Dianne Culley
Thank you for always sharing your heart and being REAL! As moms with sons with disabilities we share the daily heart breaks but also the triumphs in the simple things that most people take for granted. Thankful for the HOPE of eternity spent with the One who makes all things new!
Lisa,
I appreciate you expressing your feelings about sweet David and his medical issues. I am in the medical profession myself and know it is good to be reminded of the feelings family members as well as our patients. It sounds like David has some great people caring for him. I am grateful for this as I am sure you and your family are also. Hopefully there will be relief for David from his daily pain soon. My prayers are with you all (Mattias too!)
Beverly
I am so moved by this post that I almost can’t find the words, the right words, but please know that I am praying for you and your sweet, little, family.
I think it would be such a privilege to know you in real life. I’ve read your blog for years and you seem to be truly genuine and authentic, and your relationships feel organic and really kind of precious, and I absolutely adore that…
You, David, and your whole family are in my prayers. I know you feel blessed but also carry a heavy burden. Mom’s aren’t the only ones who hurt. I have 2 grand children with Cystic Fibrosis. Like Linda (above) what they have to go through on a daily basis breaks my heart. Perhaps the hardest thing is watching my daughter bear the burden of this disease and the unknowns of the future with not just one, but two of her children.
Love you, Lisa. So thankful that you “have this hope as an anchor…”. We know that our hope doesn’t disappoint, even when our hearts fail us.
Wow I so needed to hear your words today. My heart was literally broken. My little guy who was diagnosed with Fetal Alcohol Syndrome at age 2 1/2 and Autism at 5, has truly been struggling with school, feelings and life in general. Today was a bad day. It was truly hard for me. Hard for him. Hard all around. When he tells you he was trying his best. Real life is so confusing. I wanted to give up. I had to walk away for a moment. I was literally scared. I didn’t know what to do. I went into the hallway at school sat and cried. His former teacher walked by and went to talk with him. I calmed down from my major panic attack. I want to scream WHY? Why did his birthmother do this to him? I know I am blessed to call him my son but WHY? It was hard. Thanks for writing this post today. I needed to read those words. Remember that God knows my feelings and frustrations and even my sons. He is there beside us but can’t change anything but can help us cope. Thank you. Prayers for all of you. It is hard on a momma to watch her baby go through those things.
I guess we all have our crosses to bear. I am still heart broken over my daughter’s move to California 15 months ago (from NY) with my only granddaughter, who spent endless time with us, for a new job (that didn’t pan out). She has since given birth to another child, my grandson, who I will barely know. I pray every day that they move back to the east coast where all her family is.
Lisa, please know I pray for you and your family that God gives you the strength you need to meet each day. Your family is beautiful.
Pam
Just prayed for you and your family. Blessings to you- thanks for sharing!
It’s so nice that you want to hear about our little hurt compared to your big hurt. God bless you and David!!!
My heart goes out to you my dear! God has blessed you with this amazing little one to love and cherrish. You and your husband have gone above and beyond! When I look at pictures of you and David I am reminded of what is really important in this life. To love someone with your whole being is a amazing. You are all in my prayers. David is such an amazing little boy! Its so hard on a Mommy’s heart. Stay strong and know that God is walking with you through this. Hugs to you all!
Oh Lisa, I can’t imagine. Noah’s going through GI problems now that we can’t figure out. It’s such a struggle to see our children go through things that we as moms cannot fix. I’m just thankful for my sons big heart and love. I pray you’ll have strength. It’s a beautiful necklace! I adore it.
Thank you for your words of hope Lisa. Just what I needed to hear as I struggle with feeling of rejection but know that God will never reject me and is working in the unseen to give me a future to hope for. You have a beautiful little family and are lucky to have a loving and supportive husband. I pray that you will get through these tough times and that David goes on to live a pain free life.
Oh, Lisa, bless your precious heart and what an encouraging posts. One we can all profit from for sure. Prayers for little David and hugs to you!
I just took some time to pray for you and for David. Our God does see and He cares!
So appreciate the verses of hope today.
Do you listen to Andrew Peterson? He’s the favorite singer/songwriter of mine and my husband…and our kids too! He has a song called Day by Day based on the 2 Cor passage. It feeds my soul whenever I hear it!! I think you’d love it…it’s great to have encouragement sung over you. 🙂
The broken heart bracelet is the first thing I put on every morning and the last thing I take off before bed. It gives me comfort. Today is my son’s birthday. He would have been 24. He died last year after a brief illness in February while serving in the Peace Corps in China. Every day is hard right now.I’m taking it one day at a time. Some days are harder than others living with a broken heart. I hope I have learned to be more understanding and thoughtful of others in the last year.
i just wanted to say thank you lisa – just this week you posted about angie smith’s new book. i’ve not read any of her stuff but i knew her story and thought i’d check it out, but when i saw what else she’d written, the ‘what women fear’ book LEAPT out at me. I struggle so much with fears, especially the ‘what ifs’ of motherhood but i know God really wants to help me find a way through. although the book only arrived yesterday i’ve already been so blessed by the parts i have read. thank you so much for (unknowingly!) pointing me here. thank you too for the verses you shared today, i really needed to be reminded of those truths. our God is Mighty. x
Sending an abundance of prayers from the east coast for David and your family! Every moment is beautiful and every situation has hope…. though at times they might be difficult to find. God walks beside all of you. Thank you for making a difference in my life everyday! 🙂
Let your hope and our good thoughts we are sending out to you lift you up. One day at a time, mama. xoxoxoxo Maybe when all is said and done he will just feel so much better and you will be so glad for yesterday with the doctor. That’s my hope for you and your sweet boy.
Sending you some love today. I can only imagine how hard being mommy to someone so delicate is. My son had GERD reflux as an infant. He was my first so I thought all babies cried that much. Thankfully, through diet changes and prescriptions when he has flare ups, it is completely under control now. I pray that David’s problems will be able to be treated and one day you’ll look back on it and will be able to say the same thing- it’s all good. Thank you for your blog and sharing your life with all of us. Leslie
Oh Lisa. Such powerful words and such a tough struggle. Sending love and light to you, David, Steve and Matthias! It’s the ones we feel the most joy from that we also ache the most for. David is so fortunate to be blessed with you. Hang in there! xox
Lisa, while struggling with conception and fighting “mom jealousy”, I often lose sight of the struggles of others. Your post today opened my eyes. Thank you for sharing your story with such honesty and bravery. You and your family are an inspiration to so many. Please find peace in the prayers coming your way.
Last year was the worst year of my life thus far. It seemed like everything just spiraled out of control. I started losing things, simple things, but this that I’d worked hard to get because they were things that I grew up without. My dishwasher, DVD player, washer, the heater in our mobile, etc. In July, during a three week period, I lost my job, someone tried to steal my van and rendered it useless and my mom passed away from lung cancer. She lived in WA and I in CA. I had no money but I found a way to get on the bus and to go see her before she passed. I had no way home, nowhere to stay and no money. I missed her by three hours. I went nearly four months with no income at all and was nearly evicted. But each time things went wrong God was there and took care of things. I’m still unemployed after six months and still have no car. But when I went to see my mom, her caretakers rallied around me. They have me somewhere to stay and fed me. They helped me with funeral arrangements. When I was facing eviction, a church helped me with a snack portion of my rent and I FINALLY received my unemployment, just in time to pay my back rent and not get evicted. I’ve learned to do without ask those things I worked for. I have a DVD player, but we’re going without a dishwasher, washer and heater. I had several people all pitch in to provide us with electric heaters. My unemployment is almost out and I’m not sure what the future holds for me and my five kids but I know that God will take care of us. I’ve come across that verse from the bible, to just enjoy now and not worry about what the future holds quite a few times over the past few days. I think God is sending me a message 🙂 I’ve enjoyed seeing pics of David. He is so cute and seems so sweet. I know God will take care of him. God bless!
I am in constant awe of you and your family and the grace by which you live. When I have seen David, it is only when he is at school and he is just so amazing to watch as he walks. I have never thought about what he goes through when I don’t see him and your blog today brought up all those feelings of worry, anxiousness, sadness, doubt, that I felt in raising my own two children, even though they were both physically healthy. I will pray for David and that the Lord will ease that pain. You are truly an inspiration because you are just like David. You radiate only joy in your interaction with others. God truly uses you daily for the blessings of others.
Also saying a prayer for David.. Thanks for sharing with us all.. Reminding us all of Gods Love..Truly blessed by you!
This is so beautiful Lisa. The way you deal with the stress and worry in your life is inspiring and truely beauty in brokenness. I send you my thoughts and prayers, know that you are not alone. My daughter was born blind and I have had so many worries and “what ifs” over the years. I have learned things always work out, we always find a way and we are never alone. Thank you for this beautiful post.
Praying for David and am so glad that you are choosing to cling to truth as you go through this. Scripture is so clear that that is what we ought to do but it’s not always easy. May God overwhelm you with his grace and peace.
It’s always terrifying when our children or loved ones have to go through procedures like this. All my love and prayers with you during this time of worrying.
My husband has to actually get some of these same GI tests done and I’m just hoping it’s not something more serious.
Big hugs xoxo
I just wanted to send my support and love to you. I know all too well how scary it is to have your child go under for a procedure. I pray that his results will show what is wrong and that it can be easily fixed with medication. There is nothing worse than seeing your child suffer and not be able to fix it. Knox and I send our love. Just know that we carry David and your family in our thoughts and prayers and you aren’t alone. There are families out here that face similar challenges and heartbreaks and hope is the one thing that gets us through it. That and joy. Grab on to the joy in each day. God walks beside us, even when we can’t feel His presence. Love to you.
Prayers for David. What a great post, Lisa. Love, love, love the way you express your emotions. xo
Wow – I needed to hear these three points today. While my heartbreak and worry seems so inconsequential compared to yours and others who have commented, I’m nursing a broken heart.
you reminded me today to live each day. take each day as it comes. really… we only have grace for today. i can only imagine the pain you feel as a mama… today… i will lift you and sweet david up in prayer. i will remember we are only promised this moment and to be grateful. your blog… your words remind me we are all in this together. you are thought of and prayed for.
Just what I needed to hear this morning Lisa. I feel broken today after I learned that my parents are ‘choosing’ to move twelve hours away from me and their grand kids to live by friends. Who does that? Rejection hurts. I’m glad I can turn to Him…He will never reject me.
Moms are all the same, we worry about our babies no matter what there age. My son is 16 and has Cystic Fibrosis. It’s a progressive lung disease that requires tons of treatments and medications. I try to take one day at at time but it scares the heck out of me to think about the future and what ifs. I feel like I am obsessed with this disease it never leaves my mind. I guess God chose us moms to take on these things as we are all so strong.
Lisa,
Your words hit me hard this morning as I am sitting in a dark hospital room waiting for my two year old son to wake up. In November, Blake had a kidney transplant and endured complications. After 11 days at home, on December 5th he got very, very sick and we thought we were going to lose him. We are still here, but things like this make you realize how every moment is truly a gift. It is scary sometimes. It is ok to cry. From what I can tell your David is a pretty awesome kid and I know he and your entire family will get through this! Hugs from Iowa! xoxo
Praying for you, David and your family, Lisa. Your hope is inspiring.
Great blog Lisa, As I’m reading this it just makes me feel that the problems I have from day to day are no big deal really and makes you think alot more of others who do have real problems. You have one brave boy there, I don’t think there is anything worse than seeing children in pain even more so when it’s your own and can do nothing to help. I’m not a big religious person but I pray that David can continue to fight the good fight with the problems he has. He has a loving family for support so this will give him that fighting spirit he needs. Keep your chin up because you have to keep David’s up.