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In the last month Lincoln has had

13 blood draws

1 x-ray

2 brain surgery’s

6 MRIs, 3 of which were sedated

2 CT scans

1 Blood transfusion

2 ear cleanings

5 specialty doctors

countless whispers of “I’m sorry.”

He just turned 16 months.

 

This month has been hard. “it to shall pass” they all say.

Referring to my other kids- “all kids are relentless” My sweet Ruthie has had continued nightmares of me leaving. They both asked me if dad could start staying with Lincoln in the hospital. Ruthie had a play date and in the first time in her life she was punching a little girl, my Ruthie doesn’t punch, other than play time with big brother.

I know other kids have it worse, I know I did as a child. But this is affecting them.

I can go on to say that I’m jealous that your kid just only rolled their ankle at soccer practice and oh my goodness they need an x-ray. But that is a big deal to you, it effects you.

Just like my childhood was very different then the way my 3 live, but this is big to them, especially when your 6-year-old with his hands shaking looks at you and asks if his baby brother gets to go be with Jesus.

I have been dealing with what they call  PTSD or Secondary Trauma. Its been 2 nights since the last nightmare. The one that keeps sticking, Lincoln was on the operating table in the middle of a large ice skating rink, all I could hear was his cry and all I could see was the blood. As I tried my hardest, I just couldn’t get to him, I had no skates and I was just trying to run on fresh ice, I slipped and slipped and I was beaten and bruised by the ice. I was never able to reach him.

“I’m fine”  “my feelings are day by day.” ” We will get by” ” no really, we don’t need anything” “were all good here, thanks for asking.”

These has become my standard answers.

Because reality is, I don’t think I’ve been “fine” for some time now. I mean really, how could you expect me to.

How can I be fine when in a single moment I’m sitting next to Lincolns hospital crib. again. watching another vein botched because of skin..

How can I be fine as I wait for yet another MRI to give me an answer to whether or not he needs another surgery.

How can I be fine when we still don’t know answers to why my sons immune system is so compromised, its been recommended I don’t even take him to the grocery store.

How can I be fine when I have to take him once a week to get his blood drawn, and wait on edge for results to whether we need to administer another shot to keep his white count normal.

How can I be fine when I miss my older two dearly, and I can’t find the words to explain to them why this is all happening.

How can I be fine when at any moment his shunt can malfunction. An estimated 50% of shunts in the pediatric population fail within two years of placement and repeated neurosurgical operations are often required.

How can I be fine when I can’t take my kids back to Colorado for the summer because im having a hard time trusting that Lincoln can handle it and wont become ill.

How can I be fine when I have to witness a child come off of pain meds that his little body has become so dependent on? I’ve watched an adult have withdrawal symptoms and this by far is 10x worse.

I am fine.

As my heart breaks, it’s also mending. I have a God that loves me deeply.

As this is all so painful, I’m fine.

The fear, the exhaustion, the always questionable – Is this baby? or is this ichthyosis, shunt malfunction, or is he getting an infection? God brings us through it. I don’t know how but he does.

God has shown me this life can be beautiful. I mean look at where he placed us. My backyard is a forest.

Every milestone is celebrated, nothing gets unlooked. I have this new sense of joy and exuberance. Every time Lincoln smuggles into my neck and looks up at me with his blue eyes, that moment is the only one that matters. Every time Zion asks me to play a board game, I stop what I’m doing and play that with him, because there is going to be a time when he has other things to do. Every time Ruthie wants to snuggle, I will lift her close to my heart and run her hair through my fingers. This experience has taught me that anything can happen.

There was a day that I really thought Lincoln was going to die.

Whatever we may have to go through now is less than nothing compared with the magnificent future God has planned for us. Romans 8:18

What is coming will make sense of what is happening. Let God finish his work. Let the composer complete his symphony. The forecast is simple. Good days. Bad days. But God is in all days. He is the Lord of the famine and the feast, and he uses both to accomplish his will.

I just thought I’d share with you what I have been feeling. There is no way that I can possibly be fine. And yet, I am.

It is good that one should hope and wait quietly for the salvation of the Lord. In my distress, I said, “God cannot see me!” But you heard my prayer when I cried out to you for help. “In this world you will have trouble. But take heart! I have overcome the world.” I waited patiently for the Lord. He turned to me and heard my cry. Be joyful because you have hope. Be patient when trouble comes, and pray at all times. We must not become tired of doing good. We will receive our harvest of eternal life at the right time if we do not give up.

Lamentations 3:26 | Psalm 31:22 | John 16:33 | Psalm 40:1 |Romans 12|12 Galatians 6:9

 

Adam, that man. God I love him.

He has cried at diagnosis’, been to doctor appointments, paced and paced while we waited for Lincolns surgeries to be over. He has held me while I’ve fought back fears, he’s so incredibly selfless. He listens to every medical terminology I bring up. He worked sun up to sun down getting lincolns special tub installed. He loves our children, he loves our children, he loves our children. He carries the burden of so much. Thank you for doing life with me.

 

I want to thank you all for the messages of prayers. You have no idea how much they have meant to us, we recieved them at all the right times. Thank you for the mail and the gifts, we feel very loved.

Thank you for donating. My goodness, Thank you! Adam had to take short term family disibilty off of work. I wont go into details but he has not recieved his normal amount of pay since he took the disibilty. Because of your generous donations you have helped supplement the loss he has taken from his paycheck. You all have gone above and beyond our Goal. Its amazing, truely amazing how God takes care of us. I will attach the link if you feel compelled to donate, it will take some time to get back to his normal pay and our normal living, he goes back to work tomorrow. https://www.gofundme.com/lovinglincoln

 

 

 

 

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