As I read a bedtime story to my son tonight, I couldn’t keep back the tears. “Mama, what if I were a slimy smelly sea creature with seaweed hanging from my body?” asks the boy in the book. And his mama assures him she would love him for exactly who he was, slimy, smelly seaweed and all. “I love you, my wonderful child,” she says.
A couple months ago I was thinking about love. How do we use love to help those around us truly fly, to be a part of God’s story the way He intends? As I was spending time just listening, God spoke this into my heart. “Love is… NOT holding someone to the impossible (and quite fake) standard of perfection that the world holds them to, while simultaneously championing them to be the very best version of themselves. In this you give that individual a chance to live authentically in who I (God) have created them to be.” I’ll be honest, at first I thought he was directing this to my heart because of how I needed to respond differently to my husband. And truthfully, I did need to hear it for that purpose but over the last few weeks and frankly, the last few days, this has taken on a whole new meaning for me and I believe God gave this to me so I could hold on to it now when I’ve felt the most broken than I’ve ever felt before.
A year ago I remember thinking I would surely break… snap at any moment. Danny and I were living in high alert mode as our son Titus had begun having seizures and wasn’t responding well to medication. Our youngest, Ely began having what the medical world called “ALTE’s”, apparent life threatening episodes. Ely would have such a forceful spit up that it would clog his nose and throat leaving him unable to breath or clear out on his own. Danny and I, countless times, suctioned him out, adrenaline pumping, working as fast as we could to save him from aspiration and ultimately, our worst fear… him dying.
Leading up to this most recent week, as we’ve faced health challenge after heath challenge, there was always something we could do to help our children. Ely had a 2 and 1/2 hour stomach surgery and has not had another dangerous episode again since. He was failure to thrive and had a feeding tube put in. He’s now gaining and actually finding himself the on the growth chart. We’ve faithfully given Titus every medication the drs prescribed to successfully control his asthma and allergies and have diligently searched for answers to his seizures and what we could do, radical or traditional, to help him. We sought out every therapy and assessment we were told or felt he needed and diligently got him on an IEP, all with promises that this was just a difficult season and we would see improvement with time.
Our search for answers ended this week, Tuesday at 11:45 am to be exact. And we are left with the ability to do only one thing… Love. Titus was diagnosed with a rare genetic disease called late infantile NCL. It is progressive and fatal with no cure. This disease will take our sweet boy away before he can experience being a teenager.
There isn’t anything we can do to reverse the bad genes, to heal him. Appointment after appointment this week confirmed the diagnosis. And I’m left feeling desperate, helpless, sad… so so sad. And I find myself saying to Titus over and over again, “I love you.”
And God has been speaking to me in my deep brokenness of an even deeper love. A love that enables Titus to be all that he was meant to be despite the obvious imperfections we see in this world. And I want to champion that. I want to love my son like that.
This week I’ve become broken. More broken than I knew I could be. So broken that I can’t fix it and I’m overcome by it.
But… out of the broken comes love. An authentic, new eye-opening kind of love.
Oh how I love and am loved.
Thanks for listening… And keep praying.
Bekah
To Bekah and Danny,
I send hopes and dreams to draw the best and the most of every minute, every precious second with your boys.
Frank Harris and my sweet lost Kelsey
I’m sorry. So deeply sorry. This might seem like a terrible thing to say. But all there is for you to do until what you are dreading happens, is hope. Miracles do happen. Titus is so beautiful and full of joy. Just keep hoping and praying as we all will do. never give up. Even when there seems to be no reason to believe.
Daily prayer by name coming from Baton Rouge, Louisiana. Peace be with you and yours, brave Bekah!
The Lord is leading me to write you. I have no words to say but feel the need to tell you there is one more person praying for your family. I don’t know what God has in store for your family but I do know our Father is all powerful. I know very well the feeling of falling to the floor weeping in frustration and crying out why? My struggles are small compared to yours but we have the same God who we can hope in. For greater is He that is in you than he who is in the world. God bless you, Wanda (I am your Aunt Wendy’s sister-in-law)
Keeping all of you in prayer and asking that God give you all the strength you need. I pray that God will continue to surround all of you with His love and may you know His peace. Blessings – Chris
I simply have no words–only a mixture of heartache and hope. God will be with you through your darkest hours and your bursts of joy. I have seen his faithfulness again and again. You have an army of prayer warriors marching with you.
I do not know you or your family. My cousin posted your article & asked for prayers. My family will be praying. We will pray for your special angels to surround your family & for God’s grace & peace to carry you on your journey. You are loved!!
Bekah & Danny,
You’ll be in our family’s prayers. Praying for light to shine through the darkness.
Bekah and family,
I’m praying for you all, may you feel God’s strong arms upholding Titus and all of you.
When you no longer have the strength to hold your shields, we will hold them on your behalf. When you no longer can stand, we stand in the gap for you. When the words to pray are all gone, we pray them for you. Side by sided we walk with you, we cover you, we fight for you. Us, and many, many others. There is an army who is with you.
Sending my prayers. Love Judy Bloomquist
Praying for your family during this difficult time. Titus is blessed to have such amazing parents. May God hold you, comfort you and provide you strength.
Bekah & Danny,
When one member of God’s family hurts we all hurt. I’m just glad that you have God in your lives, because without Him what would you have to cling to? We love you guys and are praying for God to give you all of the strength you need. 💔💦
I’m praying for your son. Pray that God would heal him because he can. Matt 21:22 says “and if whatever you ask in prayer, you will receive, if you have faith.” My four year old needed two root canals and before his appointment, I had been praying for God to heal his teeth. The dentist got into the tooth and said “this (decay) wasn’t as extensive as I thought it was” and that was after two different dentists looked at X-rays and said he needed root canals and crowns. He got a simple filling. God can heal. I am praying with faith that your son will be healed.
A fellow sister in Christ,
Kristin
Danny and Bekah…God is bottling up your tears and they do not go unseen…your broken hearts are not ignored…your grief is matched by God’s own grief…
Peace and Love…
deb 🙂
My heart is breaking for you all & for Titus. I consider my time spent with you the last few weeks a privilege because of the time I was able to spend with this precious li’l pumpkin. I don’t know how or why, but God will see us through. I love, love, love you my sweet daughter. xoxoxo
Bekah, ever since your text the other night explaining Titus’ illness, I cried until I thought I couldn’t cry anymore, I was wrong of course. You know in my heart I love Titus like he’s my own. This has set me back and it breaks my heart as to what you and Danny are going through. It is inconceivable! I will say this though, Titus’ illness doesn’t change the way I feel about him…he’s still my little bushel and a peck and will always be….at least in my heart. Titus is still Titus…maybe not how I expected him to be but he is still Titus, the little man that I love. You know I pray for you all continually…even though I don’t know what to ask for anymore, but I will continue to pray. Some time soon I would love to come out and visit you all, but I’m afraid I would not be helpful right now. I do ask God to give you and Danny a true peace that passes all understanding and a strength to enjoy every minute. (I love, love, love seeing all the pictures and videos.) Grammy Pammy
My heart is breaking for all of you. I am lifting you up in prayer constantly.
Bek
You are so strong
You and Danny are so faithful
Stay strong
We are praying
We are hear for you
I can’t see because of the tears as I read your blog.
Bekah I am praying that you and Danny are filled with God’s love and peace as you walk this journey. That He fills you with His continued grace and blessings. My heart aches for you as a mom. You are in my prayers for taking one moment at a time. You are loved! Ann
It is at times like this that all we can do is love, pray, and say, “I believe, help my unbelief!” May our God sustain you with His comfort, strength, and hope just as He has promised! And remember, God’s very reputation depends on keeping those promises so hang onto them with everything you have!
God does give hope and strength when we are most down
We love you and we are praying for your family. Love Stacey and Brad
Bekah and Danny, My heart aches for you. When my daughter had triplets way too early, we lost 2 of them in a week and the 3rd was clinging to life by a thread, a wise man gave us this advice: When you have reached the end of your rope tie a knot and hang on until Jesus rescues you. Hang on and wait on the Lord He will rescue you. Love you all and pray for a miracle.
We are so sorry to hear this news. As parents we can feel a part of the pain you and Danny are going through. Your whole family is in our thoughts and prayers, especially you. May God show you a sliver of light in this seemingly dark time. We love you tons!!!
My tears are flowing with yours. Titus has given all who know him so much joy, and will continue to give that joy until our Lord takes him home. I love that little man, and I only wish I could have that same joy that he constantly presents to the world.
I am praying for healing hearts! Love you all!
You and your family are in my prayers.