Days 11 & 12 - PATIENCE
I sit in this PICU room, my new home. Stay here long enough and you'll watch everyone else leave except for you. Their babies all got better. And I am still here.
For awhile we were in game plan mode... just get him to pass his breathing tests and then we'll get him off the vent and then we can go back to treating cancer! But more time passes, and each day I get up, shower, put on clean pajama pants with a hooded sweatshirt, get coffee, and then meet with his team of experts to hear the latest. And for the last several days it's been the same news every day.
'His numbers aren't quite what we need them to be.'
'We're almost there.'
'He's just not ready yet.'
I no longer go into those meetings with hope. I hate them before they've even begun.
We couldn't ask for a better group of experts at his side. I've been amazed at how often his doctors come by to check on him, and shocked at how often they come just to check on us. They've answered millions of questions. They've listened to our thoughts and concerns. Over and over and over again. And they've hugged us when we've cried. Many have cried with us. And they've all said 'We want him better every bit as much as you do! And we're getting there... just not quite yet.'
I have never been one to be patient. If you know me this will probably make you chuckle, as not only am I not patient, I'm HORRIBLY impatient. I see something I think needs to happen, and like my Dad says, "once you get it in your head, NOTHING will stand in your way.'
So you can understand that this is a rare form of torture for me. The persistent beeping that's permanently burned my eardrums, the constant revolving door of specialists, the inability to differentiate day from night from day... all of it starts to mess with your brain. I have no idea what day today is. Only that it's the 12th day that we've been checked into the hospital. It feels like a lifetime has happened in these last 12 days.
And now I sit, over in the corner of his room, under 5 blankets and on top of 4 pillows that smell like hospital. Next to me on the windowsill I've lined up my necessities and the beautiful gifts we've been sent into a perfectly straight, OCD line. The one spot I can control.
The thoughts that dance through my numb brain torment me. They whisper that this will be my new life and that I will never leave. Or even worse, that I'll leave... alone.
I'm convinced that there's nothing more painful than watching your child suffer. It's a special sort of hell that leaves you feeling like the most worthless thing in the world. Because as much as you want to take the pain away and make it all better, ultimately you can do absolutely nothing. And you're left feeling absolutely helpless.
I sing to him. I read him stories. I try to kiss and hold him as best I can on that high crib. I try to be strong and positive when I talk to him. I wonder if I'm talking to much, or too little. I cry as I lay my face next to his and just keep saying 'I'm so sorry my baby. I'm so sorry.' But ultimately I keep coming to the same resolution... he will let us know when he's ready. Until then, I'll be in the corner pumping.
Comments (13)
Praying for you.
Beri and Brian, streaming prayers....prayers of hope, prayers for strength, prayers for patience, prayers for health, prayers for all of your family. jgd
Oh sweet, sweet Mama. My mother's heart hurts for you! My daughter was in the hospital for a week as a newborn with life threatening pneumonia. She is now 14, but I clearly remember each agonizing moment. What you are enduring is so much harder. I am crying out to the Lord for you and your precious one...Becky Jank
Oh sweet, sweet Mama. My mother's heart hurts for you! My daughter was in the hospital for a week as a newborn with life threatening pneumonia. She is now 14, but I clearly remember each agonizing moment. What you are enduring is so much harder. I am crying out to the Lord for you and your precious one...Becky Jank
Oh sweet, sweet Mama. My mother's heart hurts for you! My daughter was in the hospital for a week as a newborn with life threatening pneumonia. She is now 14, but I clearly remember each agonizing moment. What you are enduring is so much harder. I am crying out to the Lord for you and your precious one...Becky Jank
Oh sweet, sweet Mama. My mother's heart hurts for you! My daughter was in the hospital for a week as a newborn with life threatening pneumonia. She is now 14, but I clearly remember each agonizing moment. What you are enduring is so much harder. I am crying out to the Lord for you and your precious one...Becky Jank
Beri, it's been years since we have seen each other, but when I saw Mia's post on fb about Redden, I immediately started following your story and praying for y'all as well. Here's a verse of encouragement: You will keep in perfect peace those whose minds are steadfast, because they trust in you. Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal. (Isaiah 26:3-4 NIV) And as a fellow nursing mama...pump on!! Liquid gold is the best...and YOU are doing soo much for him.
Precious Beri, Waiting is the hardest thing for someone who thrives on doing. 'Be still and know that I am God...' 'Abide in me...' I'll be praying these words over you. With love, Alison
Darling girl, I'm so sorry you're suffering through this - at the same time, I'm not. It means Redden was born into so much love - he won't have to go through this or anything alone. I'm sure it feels like yours is breaking, but you do have enough heart to hold you both up right now. In the moments when you feel like it's too much, take one of those four pillows and scream into it - beat the feathers out of it - and let Redden see. He knows you're fighting there right along with him. I'm sure from your perspective that doesn't feel like much, but it's everything. Truly good people don't know they're good. They just are. They think everyone would do the kind thing to help a stranger. It's not always true. They think that everyone would jump to help a friend. Not always true either. Truly good people think all parents would be heartbroken and 100% focused on their baby's recovery - not their own discomfort, annoyance, pain, and anger. You are truly good - as is every member of your family I've ever had the pleasure to know. And your little man is lucky to have that kind of army behind him.
You have such a beautiful and big heart. Redden knows your love and heart, because you're his mama. Sending you love and abundant prayers for healing for each of you. Let us know what you really need in addition to prayers, because we are here to support you.
Oh Beri! I would just love to come there and hug you and Brian in comfort understanding, but I live in NC. My heart is breaking as I was where you were a little over a year ago. My son was in a near fatal accident and I felt exactly as you do. He was in trauma ICU for 10 days and we were helpless. The only thing I can do for you is to continue to pray God's strength and peace on you. Just continue to trust in God. That was all we could do and he answered our prayers. God's got this. He has you and little Redden in the palm of His hand. Phil 4:6-7.
"I will never leave you or forsake you" (Joshua 1:5; Hebrews 13:5; Deut. 31:8; etc.). A promise given over 75 times in Scripture -- A promise to wake up to each morning, reflect on each hour and find rest in throughout the night. Sunshine, the feelings you express are so overpowering: Living and breathing based on the sounds of monitors; watching "like a hawk" those providing care; searching constantly for what we see as positive signs; reaching out to others for comfort and compassion; feeling the nearness of those who care. As one of your updates states -- you would never wish this situation on an enemy. I am so thankful for your heart and I so understand just what that means. I will never leave or forsake you. HE CARES so much for you that HE ................. (insert need here). The road we find ourselves on is a challenging one. We feel confused, desperate, isolated, persecuted and even abandoned IF we forget HIS promise. As difficult as it is, remember that you are not on this road alone. Never forget that HE is there to be cried out to; HE is there to strengthen you in your weakness; HE knows our every need and is there to supply -- we have but to open the door. HIS love and caring is reflected all around you Ber. Look beside you to see a husband who can't leave your side. Look at Lucille (Brian's Mom) who has given up "self" to ensure your needs are met. Look at siblings who continue to "fall in" all around. Look at friends who fill up your email with prayers and sincere requests of "how can we help" and keep your phones busy with texts of encouragement and support -- those who drive all day to spend just a few minutes with you to relay their love and caring. HIS love and caring cannot be taught -- it is lived. Love and caring comes from the heart, and for hearts reflecting HIS love and caring I am so thankful. We will walk out of this facility Ber -- and we will do so carrying a healed and renewed Hoss. In the meantime we are thankful for HIS promises and how that fruit is shown through those surrounding us. "I will never leave you or forsake you." Dad