Zachary Paul, “When do you want to see Jesus?”

Zach, “When do you want to see Jesus?” Do you remember, Zachary when Mommy asked you that question during your recent hospital stay? In asking this question and ruminating about your physical health status, it became clear that palliative care should be your treatment goal. Since admitting you to Northwest Ohio Hospice, Mommy and Daddy are pleased with all the wonderful services they are providing, and we thank God for them.

Zachary, Daddy and Mommy do not know how long we will have you. We may have you for some time, or we may have you for a shorter time. Let’s not be overly anxious about these details, but let’s live one day at a time casting all of our anxieties on Him. We praise God emphatically for His faithfulness and need to be quick to give ourselves entirely to Him, for His care for us is perfect. In these days of trial, we ask others to pray that we live not according to our own desires in life, but according to the will of God and for His glory.

Zachary Paul, Daddy and Mommy are grateful to God to have you as a gift, and you are indeed a blessing to all. Daddy’s desire is that you to know this word “gift” well. See the forest through the trees, my dear son as the promises coming your way through Jesus Christ are far greater than any gifts conceivable to mankind and will surely overcome the limitations you have now. Zach, your union with Jesus is secure and this means you will spend all of eternity with Him in perfect fellowship. Let me clarify Zach. There is coming a day when your body will be raised, fully redeemed and made whole. In your perfect body, you will enjoy God in perfect fellowship forever, and ever, and ever!

Daddy quite often meditates on these truths for comfort because Daddy sometimes feels daunted by your medical diagnosis. But for as severe as your smooth brain, for as threatening as the arachnoid cyst near your brainstem, and as numerous as your heart defects, so much greater is the power of God who will overcome. Daddy finds joy when he thinks about the promises of a redeemed body for eternal and perfect fellowship with God. But, what can a father say about such gifts for his son, the greatest gifts and promises imaginable? Daddy breaks down from time to time, overwhelmed by the blessings. Zachary, do not think for a minute that Daddy is in despair. These tears are tears of joy rooted in the Gospel and the hope that the Good News brings. What a hope to remember for sure!

Zach, let’s be quick to reach out and take hold of God and trust Him for everything and live for Him completely, for He has reached out and taken hold of us. God is working in us to will and to act according to His good purpose. In faith and by His power, Daddy and Mommy seek to continuously aim to live our lives that might bring honor and glory to His Name. We take responsibility for this, and it is certainly not easy. Let’s do this taking one day at a time, and ask others to help us through prayer.

Love,

Daddy

Adjusting

Remembering our time in the hospital with Zach in December, I think of God gently nudging me again toward letting go.

Once the doctors were confident that Zach had adjusted well to his new anti-seizure medicine, they moved us from the PICU to the regular floor. We were hoping to go home soon. (It is odd to say but I actually preferred the ICU to the regular floor. When Craig and I would leave for the night, in the ICU we knew that Zach was being checked on very regularly, while on the regular floor we felt more like we were abandoning him. There was nothing wrong with his care, it is just that he didn't need to be checked on as regularly. Of course, though, as his mom, I would have preferred more attention given to him.)

Sitting with Zachary at the hospital gave Craig and I a lot of time to think and talk. Going into this hospital stay, Craig was definitely ready to just give Zach comfort care measures, while I was not yet ready to give up on the idea of corrective surgeries for some of his issues.

One morning, we were visited by a neuro-surgeon. I remember thinking, "This can't be good...there is no reason why this doc should be visiting us." He sat us down. He proceeded to show us the brain MRI that had been done and a growing cyst located in the part of Zach's brain that actually works well. He then started to rattle off all the intervention options..."God are you kidding me! Something more!"

We went back to Zach's room just to think and allow things to sink in. Craig went for a walk, and I stayed with Zach. "Oh my, so many things...God, I feel like I'm in a sick version of Choose your Own Adventure. I mean, any of Zach's issues could kill him, and I feel like it's my job to pick which one will finally send him to heaven." In despair, I remember asking Zach,

"When do you want to go see Jesus?"

Just saying it out loud brought me to tears and an emotional realization that Zach's life is not mine to hold on to. God is asking for him sooner rather than later, and I knew that I had been in denial about the seriousness of his MDS diagnosis. I could rattle off facts to you, but I hadn't emotionally let it sink in. I knew in my heart that I no longer wanted to put Zach through any heart or brain surgery. I didn't want to be in a hospital anymore. I just wanted to go home and have my family together. I'm still scared of my emotions.

The Ball Dropped...

Well, one of my biggest concerns with Zachary happened today, but the Lord took care of us even in this.

I took Zach to our pediatrician for a well check, and during the examination Zach had his first seizure. My fear before today was having Zach at home on my own when that first seizure happened. The Lord was so good to me and allowed Zach to be in the hands of a doctor when it happened!

Zach is at the Toledo Peds ICU. Our doctor decided to admit him because of Zach's so many other issues. An EEG and MRI will be done, so tomorrow will be full of waiting.

We are so thankful that Craig's mom, and my parents were able to take Aaron on such short notice, and all that Aaron knows is that he gets to hang out with some of his favorite people!

Please pray for wisdom for everyone involved in Zach's care.

God is good!

In 3 days, Zach has put on 13 ounces with the NG tube and the higher calorie formula! Our goal was that at a minimum he would gain an ounce a day! Praise the Lord!

Hard to hear...

Zach only gained 2 ounces in the past 6 days. That is less than 1/3 of what he is supposed to gain. The nurse tried to prepare me for the likelihood that an NG tube (feeding tube that goes through the nose into the stomach) will need to be placed. I think sometimes I try to pretend that Zach is "normal". This definitely shatters that. Right now feedings are taking about an hour each time. This is hard on me and Aaron, who unfortunately is watching way more TV than I would like. With the tube in place, feeding time would be cut down considerably. Zach will also be getting the calories that he so desperately needs. Even knowing all this, it is still hard...

Another gift of a Son!

No, we are not pregnant! But coming into this season, I am reminded about another baby that was given to the world. Because of His coming, He will swallow up death forever. This first baby has given hope to my baby. Thank you, Jesus!

Not much has happened in the past few months regarding Zach's care and condition. I have actually felt like a normal mom and all the worries, frustrations, and joys that it brings.

On November 10th we met with the neurologist. No tests were ordered. Essentially his job for Zachary is to help manage the seizures when he begins to have them. We have seen no sign of them yet, and we know that God could choose to intervene. We leave it all in God's hands.

Zachary has been having weekly weight checks for a while now. I have had the privilege of exclusively nursing him for the first 4 months of his life. On the 22nd of November, our meeting with the cardiologist changed that. Zach had slowed down and was gaining less than half the recommended amount for his age. He was still around 10 lbs (depending on what scale you use.) We needed to start supplementing with formula. Easier said then done with a baby who had no interest in changing to a bottle nipple! I was also upset about having to give it up earlier than I'd wanted. It was a hard week and a half but he finally transitioned. I didn't want my baby going hungry, especially because of his weight gain issue. I am still able to pump breastmilk and then add some powdered formula to it to beef up the calories. Again we trust God with Zachary's feeding needs, as they will continually be an issue in his life. We have another weight check today and we are hoping for at least 11 lbs!

The Greatest Hymn of All Time

Dear Zachary,

In the world today, Zach it is easy to despair considering all the calamities, strife, corruption, war, and sickness. Although we see this wax and wane through history, we know that God is in complete control on the macro and micro level.

We understand the scope of His sovereignty, Zach when we read through Psalm 46. God's authority is above all, and we need to stay focused on Him as our source of refuge and strength. Sometimes Daddy despairs in light of what is going on in the world. Sometimes Daddy despairs with challenges we face in life like with your health.

Reminders of hope are good Zach, and we look to the scriptures to stand firm in truths. Daddy appreciates the powerful effects when these truths are put to song like Psalm 46 in the hymn, "A Mighty Fortress is Our God." A song has a way of sticking with you for a time, and when Daddy sings this one in his heart, it's not an idle message that passes away like the wind. Daddy's emotions meet the truths in the words and brings an everlasting smile to his face. God will ensure our security no matter what we face in life.

Daddy does not have much of a singing voice, Zach and when he tries to sing Martin Luther's hymn, it sounds more of a raucous bellow. There will be a time, Zach when we will sing together in triumph. Yes, there will be many songs sung in praise about the victories of our almighty God and His ultimate authority. It is hard to imagine many much greater than Luther's "A Mighty Fortress is Our God" that we sing today. We emphatically sing and give praise to His Name, for His sovereignty, power, and strength. He ensures our security, Zach and we'll be praising His name in song forever.

http://www.youtube.com/watch?v=-Y-_TsRjm5Y&feature=related

Love,

Daddy