Moving along

I am so thankful that finally the week before Christmas, life is slowing down a bit. We have been busy the past six weeks with Thanksgiving (yummy!), classes to maintain my teaching certificate, practices and performances of Christmas concerts and dramas, and birthday parties! Thank you to Beppe for the fabulous "Under Construction" cake! I can't believe that Aaron is 3! When I look at him now I notice that this face is getting thinner and has lost pretty much all of his baby face. He's my big boy now.

There is still a sense of loss during this time as someone is definitely missing.

"God has a plan for my life!"

Has anyone has felt that God speaks to us through our children? Today we were going to the zoo and Aaron is in the back seat singing at the top of his lungs, "God has a plan for my life!" over and over again for about 10 minutes! Alright, God, I hear you!

The second half of October has flown by. Craig and I celebrated 5 years of marriage, while Aaron spent some quality time with Pake and Beppe for the weekend. Everybody wins!

Aaron went in for a visit with eye doctor as we monitor his exotropism. The doctor was happy to say that it looked better! He couldn't see it at all when Aaron was focusing on something close, and he saw it just a little bit when focused far. Keep praying!

We are trucking right along with our adoption paperwork. It is kind of a 2 steps forward, one step back kind of process, as I find out that things were done incorrectly and need to be done again. *deep breath*

Many Halloween activities happened this past week, and none was more excited than Mickey Mouse who seemed to join us for each one of them! If you tried to refer to Mickey as Aaron, he wouldn't respond to that name, but would quickly remind you that he was Mickey.

I have so much for which to be thankful!

The Race in On!

Well we are now neck deep in paperwork as we pursue an adoption of a child from China! It doesn't give me much time to get excited yet, but that time will come during the waiting period. I am so thankful that Aaron is still taking a good nap because that has become my time of focused attention each day to the paper chase. It is definitely a marathon!

Aaron is doing well. I'm getting the feeling that we might be ready to start potty training. We've been "practicing" and so one day I asked him when he was going to put ALL his pee pees in the potty and he told me when he turns 3 on December 6th. Alright, buddy, I'm holding you to that!

My mind has been starting also to get some ideas going for Christmas, so the other day....

Me: Aaron what present should we get for Daddy?

Aaron: (long serious pause) A backhoe!

Hmm.....I wonder what Aaron wants for Christmas?

Puzzles

One of Aaron's passions is puzzles. He loves them and will even do them upside down so you can't see the picture. I'm thinking that we have a little engineer on our hands here.

Our meeting on Friday went really well. We feel very comfortable with America World Adoptions and also have several friends who have used them and love them. The next big step is to choose the country from which we will be adopting. Looking at just the travel requirements that each country mandates, we have narrowed it down to Ethiopia or China. The other countries require us to be out of the country for longer than we can do. Please pray that the Lord would make it clear to both Craig's heart and mine what direction He would have us pursue.

Practice

Ummm....so evidently we need to practice a little more with the use of the utensils, but it was Chef Boyardee spaghetti!

Craig and I are very excited as tomorrow we take our first official step toward a dream that God placed in both of our hearts before we were even married. We will be meeting with an adoption agency! It is such a big decision that we want to be able to sit down with a representative to better determine what might be a good fit for our family. Please keep us in your prayers as we start this new journey!

Hearing Jesus Speak

I recently read something that really resonated with me as I think about Zachary's life. This excerpt is from "Hearing Jesus Speak into Your Sorrow" by Nancy Guthrie.

What we really are in search of is not an explanation but sense of meaning. We want to know that there is some meaning and purpose in our losses-that they are not random or worthless. We want to see the ways God is using our loss for good.

1. 
   

1. Looking back at Zach’s life, I need to know that there was a purpose in his life. I need to know that he made a difference. I am coming to realize that I cannot sit here hoping that Zach impacted someone else’s life. I can only control me. So what am I going to do with the lessons the Lord taught me through Zach’s life? I pray as Moses did, Lord give permanence to the work of my hands.

Prayers

Lord, help me to be faithful to pray for others, as others have faithfully prayed for us. Lord, help me want to want to pray. It's ugly to even admit that so often I have "better things to do". You know that "To Do" list is always waiting. Anything and everything grabs (rips) my attention away from spending time in communication with you. Forgive me, Lord, and help, please.

Prayer for Aaron

I sometimes struggle with the idea of fairness. I mean, Aaron is supposed to be my child that doesn't need to go to the doctor. Well, Aaron has been having some eye issues since this winter. His eyes will wander outward. We have been doing some eye exercises with him as recommended by his ophthalmologist, and so far this issue is not affecting his vision. We just had an appointment today, and the doctor was encouraged that it hasn't gotten any worse. But his experience tells us that it will be getting worse, even possibly losing vision in one eye completely! Please pray! I feel a motherly despair, except for the Hope that I need to remember. Lord, I feel you are my only hope to rescue Aaron's eye sight.

Confused

Would you think less of me if I told you that I don't cry as much as I think I should? I am confused about my own emotions. God seems to have wired me to be one who likes to be inside-the-box, a rule follower. So when my emotions don't do what I (and everyone else) think they should, I don't like it.

It is hard even to figure out what to blog about. All my other posts would springboard off my daily activities with Zachary...

Before Craig and I started having kids, our family plan was to have a couple of kids biologically and then some through adoption. At this point the plan to adopt has not changed, so every now and then I will go online and do some adoption research in order to start narrowing down the big topic that is adoption. It is very weird to think that my future son or daughter may already have taken their first breath. (Keep them safe, O Lord!)

Praise the Lord that He saw fit to adopt me into His family! Through the Bible, I know that Heaven is a free gift, and there is nothing I can do to earn or deserve it. Just like any children that the Lord may bring into our family through adoption, there is nothing that they can do to make their "chances" any better. God chose me, and for that I will be forever grateful.

Brave

I feel that over the past year that the Lord has strongly pulled (ripped) me out of my comfort zone. I was called upon to do things because they needed to be done, and they had to be done by me. That's not being brave, that's survival. Now that I am finding my way in this new normal I don't want to settle back into my own little safe circle again. I want to be brave when the Lord calls me to step up because I choose to, not because I have to. I want to serve/love others as I have been served/loved. I can be such a chicken and talk myself out of just about anything that I don't want to do. But it's not about me, it is about Him. Help me be brave!

You can

I can't believe that it's been 2 1/2 weeks since Zach went from my arms into Jesus' s.

For some reason in my life I've always thought that those big life moments (getting married, becoming a mom, losing my child) would somehow foundationally change me in some way. As if I will become a new person. But each time as I look back after each of these events have happened I realize I am the same person. There was no lightening bolt of wisdom that has been infused into me. I still struggle with those day to day issues.

As so many of you are praying for us during this time, I want you to know that your prayers are being answered. God has blessed me with so much faith and with His peace that passes all understanding. Of course, I miss Zach but there is no despair. I want to hold him again, but I know who is holding him better than I ever could. I know that Zach is better now than he has ever been.

I have been thinking about my ultimate goals for my children. If I were to rank them from most important to least...

1. Spend forever with the One who loves him with a perfect love.

2. To do whatever it takes to accomplish #1.

3. Everything else.

It is hard for me to be too sad knowing that Zach has already achieved my ultimate goal for him. For what does it profit a man to gain the whole world and forfeit his soul? (Mark 8:36) To God be the glory for Zach' life because if God's doesn't get the glory than I can make no sense of all of this.

What about you? Do you know for certain that if you were to die today that you would be spending forever with the One who loves you with a perfect love? You can.

That's the Way it is Supposed to Work!

Dear Zachary,

It’s been ten days since your spirit (soul) went to be in the Lord’s presence, and Mommy and Daddy sure grieve the loss of having you here with us. I’m sure it’s wonderful to be in the Lord’s presence, though! I suppose that is the understatement of the day. Since your passing, we have been reflecting on how much joy and hope, and how many blessings God has poured out to many through your life.

Zach, Mommy and Daddy believe this was the purpose of your life; that the joy, hope, and blessings people experienced through your life would point people to God as the ultimate source of joy, hope, satisfaction, and life. Sometimes it takes these earthly trials, hardships, and sufferings to see this as this causes us to turn to God for help. We see how faithful He is, and God in his mysterious and wise providence certainly works things for our good if we follow Him obediently through love. What a hope to remember, Zachary! The good is that we start trusting Him all the more as a source of strength, hope, and security.

Daddy recalls the pain of Good Friday (April 2^nd) 2010 when we received news that there would be significant health challenges in your life. Mommy and Daddy were very tearful, hurting, and anxious, but with hope in God, we did not give up on you. It was God who carried us, putting so many loving people in our lives to help with your care, to care for Mommy and Daddy, and to care for Aaron.

God’s command to love your neighbor as yourself took on many different forms, and this command was followed in many different ways by so many different people.

It’s insightful to remember the specifics and to see God’s blessings through loving hands:

Loving people helped in your care (baths, feedings, medications (oral, injectables, aerosols), skin care, cuddle time, diaper changes, etc.)

Loving people helped Mommy and Daddy (e.g. errands, meals, babysitting)

Loving people helped take care of Aaron (e.g. babysitting, meals, reading books)

Also, you remember all the cards, letters, prayers, and words of encouragement we received, right Zachary and how wonderful are caring and encouraging words on a dark day?!

Daddy concludes that is it most important to trust God, treasure God, hope in God, and live for Him. This is so hard, and Daddy is still learning how to do this. He will work things for our good, but we need to trust Him! We should not despair when we go through life’s trials and hardships, as God will see us through. He is so incredibly faithful. He is the good shepherd.

I think of how tremendously blessed we were to have so many loving people in our lives and still now. People were quick to recognize we needed help and propped us up in so many ways, too numerous to count. Words cannot express how grateful Daddy and Mommy are to experience so much love from so many loving people rushing to our side to help during our days of trial. I guess that is the way God intended it to work, and what a testimony! Mommy and Daddy have learned that we need to be quick to love others in similar ways as people go through their own trials. We aim to give God glory for helping take care of others through love for God has certainly taken care of us!

Love,

Daddy

A Hope to Remember

Please join us as we celebrate Zachary's life and the hope that is in Jesus.

Friends may call at the Reeb Funeral Home 5712 N. Main St. Sylvania, OH, Thursday June 9^th from 4 – 8 PM.

The Funeral Ceremony will be conducted at Westgate Chapel Friday at 11 AM.

Home

Zach is now in the peaceful arms of Jesus as of 4:24 PM, Sunday, June 5th.

...most likely within the week...

Blessed Immensely

Dear Zachary,

God has blessed Stephanie and I immensely by giving you to us as our son. Our time with you now is very short, and Daddy and Mommy are feeling the waves of melancholy come our way. We are now grieving and preparing for impending loss. Zachary, know with highest certainty that we will battle against any feelings of despair. Far be it from despair is the Good News that is the Gospel which means that you will be with Jesus soon. Zach, you will be with God forever, and ever, and ever, and it will be so great and so wonderful for you to experience this fellowship with Him that we won't focus much on what this life here did not give you, but sing praises of joy to God for what is coming your way through Jesus. Enjoy sweet fellowship and worship with Him, our precious little boy, and one day we'll meet up together. Daddy and Mommy are looking forward to that day, whenever that day shall come.

Love,

Daddy

Apologize

I first want to start by apologizing. I've realized about myself that I have a hard time giving someone bad news when I'm speaking with them face to face. I am so bad at this that I have lead people to believe that Zach is doing better than what he is. I think that part of the reason that I do this is because I'm afraid that if they knew the truth they might regret ever asking.

So here is to being truthful...yesterday (Wednesday) was hard. It started out "normal" for us. On Tuesday our doctor was worried that Zach might be silently aspirating so she had us slow down his feeds to 100 ml/hr. (7 oz bottle would take more than 2 hours to eat) But on Wednesday about 1 hr into his breakfast, I heard him aspirating. (liquid going into the lungs) I immediately stop his breakfast, called hospice at 9 AM, and waited for them to come. Poor Zach was just so uncomfortable. I knew this was bad. It took some phone tag between the on-call nurse and our nurse but she finally arrived at 11:30. She helped me to make sure his ng tube was placed correctly ( I was way too rattled to do it on my own.) Then she began to remove the air in his stomach that she had put there to place the ng. What she found instead was half of the breakfast that Zach had been given 2.5 hours earlier. Not good. Zach's digestive system is starting to shut down. His stomach had been so full that it had begun to overflow into his lungs. As soon as the nurse removed the contents from his stomach he was completely relaxed. It was decided yesterday to move Zach onto pedialyte only. Even on pedialyte it is still taking Zach about 4 hours to absorb 3 ozs.

Craig and I suspect that before the end of June, Zach will be ushered into heaven.

We have been trying to prepare Aaron for this. I would say that yesterday was the first time that he understood that Zach is "broken".

So Good!

It was fabulous being able to spend time with my Grandma and Aunt Donna for a few days. It was such a blessing for them to be able to come out from British Columbia to meet Zach and play with Aaron. And what is more important than cuddle time?!

Some slips downhill

For the past few weeks, Zach's breathing has become more labored. We are not sure what is causing the breathing difficulties, perhaps cardiac issues. He will inhale, hold his breath for a few seconds, and then exhale. It is/was quite scary to watch because during those pauses you are afraid that he might not exhale again.

He was clearly not comfortable so we have increased his Morphine and Valium hoping that it might help him relax while breathing. He is also now on oxygen most of the time. Let me tell you that those oxygen converters are loud and put out a lot of heat! At night we can't keep it in his room because his room becomes like a sauna, so we run tubing from the main floor up to his room.

I have to continually remind myself that his comfort is more important than my feelings. At this point for Zachary his breathing is most relaxed when he is somewhat sedated. Another step in this long good-bye.

Aaron (our 2 1/2 year old) is doing so well. I have been wondering when is the right time to tell him that Zachary is a very sick boy. He has no clue right now that Zach is different than other babies. Don't all babies eat with a feeding bag and have medication administered every 2 hours? I want to prepare him for the roller coaster that he is going to be riding. As a mom I am more concerned with how Aaron will and is processing all that will be happening than I am about myself. I want to be able to save both my boys from suffering, but I can't.

Long term or short term

The planner in me of late has been struggling with the big question mark that is Zachary's life. I feel that I have to prepare myself emotionally for Zachary being with us for a very short time, but the reality is that we really have no idea how long he could be here. It could be weeks or years.

I guess I'm just not sure how to proceed with my life. I hate to say it but I feel like I am in a holding pattern.

We had a wonderful day as my grandma and aunt are in town from the west coast of Canada! Unfortunately Zach had another spell of infantile spasms today, and we haven't seen any in weeks. Very disappointing. I can't write a lot today as I am working on getting packed for a trip out to Bethlehem, Pennsylvania to visit my brother! I hope everyone's weather is as gorgeous as our is today!

Sleepy boy

Had some rough days this week. Zach has been screaming, crying whenever he was awake, so we started him on scheduled Morphine and Diaspam. After playing with the dosing and fighting with constipation, we now have a boy that can be awake and not be in pain. We are not sure what is causing it,whether it was some of his other meds or one of his several issues. During this time, we are reminded again of how short our time with Zachary will be.

He is sleeping peacefully next to me now. As we live in the sad expectation of his passing one day, my mind wanders to what our pastor shared in church about living in joyful expectation of Christ's return. Let me tell you, in my position, wanting Christ to return is all selfish. I get excited just considering going to our heavenly home with Zachary, rather than having him beat me there. I mean, parents are suppose to out live their children, but I guess even Eve had to experience the pain of losing a child.

Everyday activities

This week has nothing really new to report. Aaron brought home from church a lovely cold that he promptly shared with each of us, except Zach thankfully.

Zach is still having sporadic seizures throughout the day. They are quite small and many of them seem to happen when he gets startled. We are not sure if we will ever be able to get complete control of all his seizures. My mind sometimes wanders to what physical ailment might finally takes him from us. Thank goodness that it is in God's hands.

Zach's list of nicknames has been growing about as fast as he has. If you haven't had a chance to see Zach lately you are missing out on our "little" portly pork chop. If the Lord blesses us with Zach until Halloween, we have already decided that Zach will be Sir Topham Hatt from Thomas the Tank Engine series. (For those of you creative people out there...help!)

Thank you again for your prayers. I know that I have no idea the full impact that they are having, but I know my faith has been strengthen during these times.

Rollar coaster

When I look back at last week's post, I can get so frustrated. We have had to increase Zach's medication again this week. We were noticing very small spasm activity and with this type of seizure, it has to be completely eradicated. Also Zach has become very fussy (crying/screaming); it's another side effect of the IM med he's on. And when it happens throughout the night...ugh! So we have started him again on Valium, but this time with a little Morphine. Bye-bye to my smiley baby, for now.

Tomorrow Craig and I will be visiting the cemetery.

Thinking back a year ago, Good Friday, we found out that our precious baby would have some serious challenges in this life. We thought, at that time, that we would be having a special needs baby. Instead, the Lord has chosen to bless us with a terminal baby. For some odd reason, typing that word terminal made me think of an airport. Zach is not here to stay. He's on his way to heaven and God has allowed him for a time to have a layover here with us.

Praise to the One who conquered death. Remember Him this Easter season.

Let the Praises Ring!

For the past month I had noticed sadly that Zach wasn't smiling at all anymore. I know that the sadness I felt over this was grieving the potential that he might never smile again.

Thank you, Lord, my happy baby is back! The new seizure med is finally working after one increase in the dose; we haven't noticed any seizures since Saturday. The Valium is out of his system, and he is so chatty and interactive. A few weeks ago, he didn't even have the energy to suck on his pacifier. It is amazing the difference in just a few short days.

We went to the cardiologist on Friday, and for some reason I was expecting him to be upset with us over this medication. Instead, he began to chuckle to himself and then made reference to God having a hand in Zach's cocktail of daily medications. He then explained to us that one of the side effects of the Acthar medication is high blood pressure. Zach's heart actually works MORE efficiently with a higher blood pressure! And Zach's skin has been a challenge for us to maintain as he has had pretty severe eczema, but now his skin would be the envy of people the world over. It is so beautiful! (We have been warned, though, that severe acne is probably going to be coming. We'll enjoy his gorgeous skin as long as we get it!) When a doctor has to give credit to God, I can do nothing but "Let the Praises Ring!" (This has been one of Aaron's favorite songs recently, and he will randomly yell out these words. I'm sure as I reminder to me!)

Prayer

Craig and I ask for prayer as we visit a funeral home this Friday afternoon. I really hope that I like this one because I don't want to do this more than once.

Family Fun

It was so much fun to have my Auntie Ann come into town from British Columbia for a long weekend. She pampered all of us with some very relaxing foot massages, and of course we couldn't leave anybody out!

Tunnel with no light yet

The seizures continue...Zach has been diagnosed with infantile spasms. These are seizures that don't respond to regular seizure meds, so he is currently taking a drug called Acthar. It is definitely not a "clean" drug. It has many not-so-good side effects, but according to the doctor Zach will hopefully only need to be on the medication for a short term. The goal is that this med would quickly eliminate the spasms and the EEG pattern that is connected with it.

Because of Zach's heart condition, our neurologist is choosing to start with a low dose and work his way up. So far we had not seen a whole lot of changes in the seizure activity. We have been on the medication for a week now. Oh, and did I mention that it is an intramuscular injection administered daily by Yours Truly? It really is amazing what a parent can learn to do for their child.

Out of Control

What a change a week can make! Poor Zach, we first noticed Monday morning that he has been experiencing several clusters of micro-seizures. They come in waves of about 10-15 at a time, and he has an episode about every 3-6 hours. It has been a long couple of days. We were hoping that just an adjustment in his medication due to his weight gain would solve the problem. He is still having them today, though. Hospice is going to be sending oxygen over to the house, and he most likely will have his levels drawn to see how much of the medication is in his system. Thank you so much for all of your prayers during this time.

Stirring up trouble

Zach is doing so well right now. I feel that we are in a really good rhythm. Right now he is such an easy baby. We actually had a "problem" a few weeks ago that he was gaining too much weight, after months of trying to get him to gain. It was easily fixed with lowering his daily caloric intake. (If it were only so easy to lower my own daily caloric intake!) His skin is doing so much better from the eczema, and his hair is growing in bleach blond! Got to love the Scandinavian blood!

When we decided to enroll Zachary in the Hospice program, part of the services included a Bereavement counselor. When we first met Ms. C, we realized that amazingly enough, she attends the same church that we do! (We go to a large church.) Craig and I have been meeting with her since January about every third week. She has already become a friend in such a short time. (And now we see her at church all the time!) This past week she challenged us to begin planning Zachary's funeral. Besides the practicality of having our wishes written out and connections established with partnering facilities, it would begin to help Craig and I really face what is going to be coming our way. So with a deep breath and a large box of tissues we will begin meeting with funeral homes. Nobody should have to do this for their child, and yet I know that countless parents before me have walked this path. It is not them that is important to me, but who is walking with me. My Almighty Heavenly protector has not failed me yet, and I cling to Him.

Lord, help me not to forget all you've done, especially when things get easy. It is at those that it becomes so easy to forget.

It is not just Him with me during this time. He has also chosen to surround me with so many others. First of all, He has blessed me with a husband who is also clinging to our Savior. The past year has actually brought us closer together, which is a testament to God's faithfulness to us. Second, our parents have also come along side us, supporting us practically through loving on our kids. They are giving us parents a break, so that we can focus on each other now and then. Third, our friends Barb and Mindy are truly part of our family. They serve us as the Lord leads them. Fourthly, I want to thank Sally, Alona, Fred, and Alice. Finally, well, there are so many others that have given of themselves in big and small ways as they walk this path with us...short notes, fix-it jobs around the house, hugs, a painting (see above), prayers, a listening ear, diaper runs, meals, distracting Aaron so that I can actually write this blog! It almost seems silly to try to say thank you. I guess I must trust that God will one day show each and every one of you what your love has meant to us. Thank you.

Short list

I was working on Zach's baby book today and was thinking how small his list of "firsts" is going to be. And yet it also came to mind that he will be attaining one of the most important "firsts" first in this family - heaven!

Normal Mom

For the most part right now in my life I am trying to balance life just like any other mom. You know the time management piece of being a mom...how much time should I focus on my kids, on my To Do list? Am I giving the effort to my marriage like it deserves? Does God get a priority or leftovers? I'm pretty sure that this struggle will never go away this side of heaven.

I know I'm not the only one that feels that pull of priorities. I am also pretty sure that I'm not the only mom who is experiencing some guilt because she feels that she could do most of those things better than she is. *sigh*

Lord, guide my steps today.

A time to...

(I have no idea why this is posting in all capitals, and I have no idea how to change it...so frustrating!)

I have wondered why I'm not as sad as I think I should be. From the way that people interact with me, I feel that I should be in the depths of depair. But I'm not.

In fact, I'm enjoying my life right now. Part of me thinks I should feel wrong about feeling this way, but the Lord brought to mind Matthew 9:14-15, "Then the disciples of John came to him, saying, “Why do we and the Pharisees fast, but your disciples do not fast?” 15 And Jesus said to them, “Can the wedding guests mourn as long as the bridegroom is with them? The days will come when the bridegroom is taken away from them, and then they will fast."

It is a time of laughter and dancing in our home now as we enjoy Zach and all he brings to our family. I don't want to be sad now. In a way I feel that this wouldn't be fair to Zach to begin to mourn while he is still with us.

Of course, I have those moments (usually alone in bed) when I really let my mind go to what life might be like after he is gone, but that is definitely not the norm. I know that the weeping and mourning will come, but that time is not now. I don't want to miss any moment with Zach because I was wrapped up in my own emotions. Lord, help me treasure every moment.

Ecclesiastes chapter 3 in the Bible says,

"A time to weep, and a time to laugh;

a time to mourn, and a time to dance"

Little Smiles

It is so easy to forget that Zach is already 6 months of age. Developmentally, he is closer to 3 months of age. In the past I did not prefer the infant stage, but God is definitely changing my heart.

The past few weeks have shown us a change in Zach's ability to interact with us. This change has been a gift from God directly to my heart. We've noticed that he will now cry for attention! He knows when no one is paying attention to him. As soon as I turn to him, he will stop crying and begin this small but oh so powerful smile. Nothing is better! Just looking at this picture melts my heart every time!

Overwhelmed

I am just overwhelmed with all the support that we have been getting from near and far. So many people have volunteered to watch both boys, so that Craig and I can get out. Your love for us is definitely appreciated!

This past Saturday Zachary was 6 months old, so we decided to throw him a birthday party! And who doesn't like a party!

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.