Change of plans

Craig and I went into our appointment with the pediatric surgeon so convinced that a g-tube was what we wanted and it would be the solution to all our feeding woes with Zachary. (One can dream.) After the appointment we came out realizing that nothing is that wonderful and everything has its pros and cons. We have decided to stick with the ng tube for now. It really is working well and it doesn't involve making a hole in his abdomen.

I do love coming out from a meeting, looking at Craig, and realizing that we are both on the exact same page. It is so reassuring. Craig has been such a gift as we go through this journey together.

Excited to go to the hospital!

The only procedure that we have decided to have Zach go through is having a g-tube put in. There are several reasons that we are doing this, but as a mom, the reason that I am most excited about is to be able to look at his face without tubes and tape! We have an appointment with a pediatric surgeon this Wednesday afternoon to discuss the g-tube placement.

Feeding Zach has definitely been more challenging than Aaron. With Aaron, I nursed, so my body would just produce what Aaron needed. Zachary is unable to suck and swallow like he needs to, and ng tubes were never meant to be a long-term solution. The tape either tears his face up or won't stick...so frustrating!

It is hard as a mother to place an ng tube when clearly Zach does not like or understand it, but I do it because it is what he needs. What does God see when we are hurting? Does God see us in the same way? Does it hurt Him when we hurt? Lord, help me trust that your perspective is perfect. Help me say with Hagar, "You are a God who sees and looks after me." (Genesis 16:13)

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.