Hewitt and Titus Update

Sorry for the delay on this. Things have been crazy around here. Even more so than usual, if you can imagine that.

Once again I am feeling thankful for God's hand on our search for a neurologist back in 2008-2009. He was a comfort to me in the hospital with Titus, assured me that what he was dealing with was common and really put my mind at ease. He is funny, caring and brilliant. I am so thankful for him! If you are in Seattle area and you need a pediatric neurologist, I HIGHLY (yeah, I shouted that) recommend Dr. Marcio Sotero.

Titus: The EEG showed that Titus is not having seizures. The neurologist explained to me that they're tics and the only reason we even did the EEG was because of Hewitt's history. I am so thankful to have seizures ruled out. It's a huge relief and has cleared a lot of space out of my brain not having to wonder and worry. He did tell me to watch for OCD and ADD, as those tend to be issues that typically arise in children with tics. He shared some great information with me about how common it is for boys to have tics and that for a lot of them it goes away on it's own and never needs medical intervention. I'm so thankful to be able to move forward on this.

Hewitt: Well, he continues to have some seizures. They are almost always absence seizures but I do notice them and this does concern me. I still thinking I am seeing an occasional myoclonic seizure in his hands as well. We have a 24-48 hour EEG scheduled for him in June. The dilemma we are facing now is that he is as high as he can go on the medicine he takes for absence seizures. He doesn't tolerate it at a higher dose. So, if he is having as many seizures as I think he is, we will need a new plan. Right now, we are talking about a diet change for him that would include higher fats, low carb, no sugar. This would be a hard change for him, but I think we could do it and we might just do it for everyone if we do. I don't know, we'll see. We might end up being in the hospital for 48 hours this time. We are hoping to catch these episodes he has at night, so they might keep us in 2 nights instead of one. We won't know until we are there though.

Hewitt came and visited Titus on the second day in the hospital and I caught this great pic of the two of them. I love it so much. We had just ordered Titus' lunch and Hewitt and Titus were exchanging stories about hospital food as I took this pic. It was pretty sweet!

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May Newsletter Article

Here we are, at the end of the year, and I had great intentions of writing you an inspirational end of the year article. As I sit here staring at this screen, all I can think about is my friend, Kari Bennett, who was sent home this week from the hospital with hospice to live out her last days at home. She goes home to loving parents who have stepped up to help with the needs that come with fighting cancer. She goes home to a devoted loving husband. She goes home to her 3 kids. All I can see when I close my eyes is here rosy cheeks and her beautiful red hair. I can hear her laugh…a laugh that carries across the room, the kind that makes you want to join her conversation. She was so full of joy.
So, I sit here, not ready to see a lesson in all of this yet, I have barely begun to grieve. But, I can’t help but wonder what God has been wanting to teach me these last few years. I can’t help but feel like He is trying to get my attention. These last few years have been stricken with loss and after living most of my life without much experience with death I feel like I’ve been plunged straight into the fire of it all. I look at this situation, knowing that God is just. That His version of love is one that I will never comprehend. That my finite mind will never be able to grasp that this is His perfect way of loving Kari and her family. This is where faith kicks in right? It’s been a lesson He’s been teaching me a lot lately. He’s teaching me to hold things loosely. He’s teaching me to be prepared. He’s showing me that in His perfect plan, He will make things right. That He will be glorified through all of the pain. That His glory is what’s best for all of us. I can’t lie – sometimes I don’t understand and a lot of times my view is clouded by my American upbringing that tells me I have a right to life and prosperity. When really, life and prosperity has long been incorrectly defined by our culture. And, although I’ve learned it hard, and lately I’ve learned it often, that I have to lay things on the altar and let Him decide what to do with it. If given the choice, I never would’ve put Hewitt on that altar when he got sick. But, as long as I clung to Hewitt, the longer I lacked peace, the longer I was in pain, the longer I felt angry. As soon as I hiked that mountain and laid him on that altar, God released me from many of those feelings. Of course it still hurt to watch my child suffer…He didn’t turn me into a robot. But, I was at peace in my soul again. I wouldn’t have chosen to say goodbye to my Grandpa, to watch him die in a depressing nursing home…not knowing where his soul would reside. I sure hope I see him in heaven, but I sincerely don’t know. I wouldn’t have chosen to sit by and watch my friend Troy’s kids learn that he suddenly died of a heart attack on his run at lunch that day. I wouldn’t have ever wanted that to happen. My heart aches as I watch my baby hit his milestones with ease as several friends suffer through infant loss, and special needs children that they never even saw coming. I never would’ve chosen for my sweet husband to have to find his own mother dead on the floor. I ache for him, for the hole it leaves, for the trauma of that experience, for him living the rest of his years motherless. The fact is, we don’t choose these things. We never know what tomorrow brings.
I’m learning that I need to be prepared. So, how do I prepare for pain? I have to know why I believe in God. I must know the character of God. I have to trust that in all of the turmoil of life, God never changes. He is always the same and all of his promises ring true, despite what our circumstances look like day to day. I think one of the most impactful and encouraging things that God has used through a lot of these hard times is scripture I’ve memorized and songs that uplift my soul and point me back to Him. When I am strung out on grief, shaking my fists at Him, living in despair, when hope is out of sight, and I can’t even muster the energy to read; the simple truths of who God is the thing that pulls me out of the darkness. Here are some of those truths that I cling to:
God’s independence or self-existence. He’s not dependent on anything outside Himself. He is life in himself. (John 5:26)
God gives life and breath to everything. (Acts 17:25)
God’s immutability expresses his changelessness. He remains forever the same true God. (Hebrews 13:8)
God’s eternal. He is timeless and everlasting. He has no beginning or end; He does not undergo growth, development, or maturation. (Deuteronomy 33:27, 1 Timothy 1:17, Revelation 22:13, Isaiah 57:15, Psalm 102:27)
God is omnipresent. God fills heaven and earth. (Jeremiah 23:23.24, Psalm 139)
God is omniscience. God knows everything. (1 John 3:20, Psalm 139:4, Psalm 94:11)
God is good. (Psalm 145:9, Mark 10:18, Luke 18:19, Jeremiah 33:11, Matthew 5:45, Luke 6:27-36)
God is love. (John 3:35, 17:24, Exodus 34:6,7, John 3:16)
God is holy. (Acts 3:14, Hebrews 7:26, Psalms 78:41, 89:18, 99:3,9; 11:9, Isaiah 12:6, Jeremiah 51:5)
God is omnipotent. He is without bounds or limit in ability. (Revelation 4:8, Hebrews 1:3, Genesis 18:14, Jeremiah 32:27, Matthew 19:26, Luke 1:37, Hebrews 6:18, 2 Timothy 2:13)
God is sovereign. He is king over all creation and He rules the destiny of human beings and nations. (Matthew 28:18, Ephesians 1:11, 1 Timothy 6:15)
My hope comes from the promises of God. It comes from the truth of His Word. It lives because of the gift of His Son. He tells me “For I know the plans that I have for you, plans for welfare and not for calamity to give you a future and a hope.” Jeremiah 29:11
I know over the next few weeks and months to come, I will need to cling to these truths. What I seem to be learning so slowly is that I need to cling to them and proclaim when I’m up on the mountain top, not just down in the valley. Kari lived with this confident and infectious joy. She lived with beautiful devotion to Christ and to her family. She loved her kids and the unique ways God gifted them and believed in them fiercely. I am inspired by her life and by her dedication. She unashamedly claimed Christ as her first love. I’m thankful to have been able to call her friend. I look forward to seeing her beautiful face again in heaven.

Hope

Hope Ellen Anderson June 17, 1952- March 19, 2013

If you haven't already heard, March 19th, my mother in law, Hope Anderson, suddenly passed away in her home. Hope had many medical issues, the most glaring was a blood clot that ran the length of one of her legs. She didn't get much relief from this clot and it caused her a lot of pain and a lot of frustration. They believe that clot was most likely the cause of her death. That part of it broke off and went to one of her lungs. We will never know for sure what happened, but we do know she is no longer suffering.

The last two weeks have held a mix of emotions. As some of you might know, my mother in law and I did more toe-to-toe than we did eye-to-eye. Losing her so quickly made the reality of our relationship cut sharp. Although the things we disagreed on were things that I felt were necessary for protection of my own family, it doesn't change the fact that our relationship wasn't the best and that is just hard for me to swallow some days. Death, although simple and permanent, leaves a wake of complicated emotions and grief. Not being able to say goodbye might be one of the hardest things. Not being able to reassure her that despite the years of toe-to-toe I still saw her heart-to-heart. I still longed to see her whole, to see her well, to see her happy again. My heart broke to see her in pain, to see her let go...that all of my disagreement was with the hope that it would shine light to where she was hurting and that light would bring her some relief from her pain. I don't think she was ever able to see it that way while living and it hurts to think she thought I just didn't love her. I know that it doesn't matter now. She is free of pain, free of suffering and for that, I am so thankful. I am relieved for her to be able to leave her broken body behind. I hope as the years pass the hurtful parts of our relationship will fade and these memories will be what shines:

I will remember these things about Hope.

She adored her boys and loved them furiously. She protected them from harm and clung to them for love and hope. She came from a hard upbringing and fought her way out. I wish I could have seen this young Hope - the fighter, the lover, the one who lived full of life and joy.

This woman, she loved Jesus. She adored Jesus. She didn't do Christianity perfectly, but who does? Who ever could? She talked about Jesus, she dreamed of joining Jesus in heaven and she shared that dream with all who would listen. She looked upon this world as a temporary dwelling and in her departure I would like to think she was glad to say goodbye. Excited to run into the arms of her Savior. The only peaceful, perfect protection her heart has ever really known. Goodbye to the pain, goodbye to the heartbreak of lovers lost, goodbye to a broken body that let her down, goodbye to a world full of hate and sin and all that is anti-Jesus. She longed for beauty and redemption.

Nanny, her grandchildren called her. Nanny, was their grandmother that brought them little gifts. Nanny, was their grandmother that loved her little dog. Nanny, loved things that were pretty. She loved flowers and color and all God's living creatures. She found pretties and surrounded herself with them. A gesture of worship to the one who created all of the beautiful things, I think.

This woman, she prayed. She prayed for all things she knew that were hurting. She lifted her family, her friends, her hurts, her struggle, her lost love, strangers as friends, she lifted them all the same...she lifted them to the One she believed could heal and trusted He knew what to do with it all. Her faith was like that of a child.

She was beautiful, she loved, she was full of faith and worship and these are the things I will remember.





All of the family together. She would have LOVED this.

Hewitt & Titus

We had to reschedule the boys' appointments for the 15th & 16th. I will update after that. Titus continues to have the movement and I'm anxious to get hear what our neurologist thinks.