Some miscellaneous ponderings...

So here are my latest ponderings and conclusions…

Losing the Jakester has brought up some questions when it comes to truths that I believe or thought I believed or do believe, but it looks different than what I thought. =)

Interestingly enough, what brought up one of my ponderings, was a Jehovah’s witness who knocked on my door and presented me with a little pamphlet with several questions and answers. One addressed the question of where God is when bad things happen. She used a hypothetical example of a baby dying and people saying that it was God’s will and maybe he just needed another angel. (Ironic, I know!) She proceeded to tell me that something like that is not God’s will. I just smiled and nodded, but the wheels started turning. I guess I started just really thinking about the difference among God’s plan, God’s will and God’s omniscience. Then, like the next day, I was talking with a friend who experienced the loss of a good friend in Afghanistan a few years ago. When she was describing the events leading up to his death, it seemed evident that it wasn’t just random chance that he was killed. After much discussion, we came up with some conclusions.

These were things I was thinking about maybe a month or so ago. Then I was talking with another friend and she mentioned things happening for a reason, which is something I typically tend to say or think too, “everything happens for a reason.” However, that doesn’t quite sound right if you think about there being a “reason” for your baby dying. I mean, mostly because that sounds like God made it happen. It turns out there is a big difference between “caused” and “allowed.”

So here's my new philosophy:

Now, I don’t for a second think that God killed this man in Afghanistan or planned for Jacob to be born in such a way that couldn’t sustain life. I do believe that God wants the best for His people and wants them to be whole and healthy and happy. I believe that He is sad when we hurt. So were those things supposed to happen? God could have healed, he could have intervened, but for whatever reason, he didn’t. Since he knew that these things would happen, he worked them out to fall into place with other future (and past?) things. So, I guess these tragic incidents are in the plan, but I don’t think they were planned…if that makes any sense whatsoever. It’s kind of like Judas betraying Jesus. God didn’t plan for him to or cause him to betray him, but since he knew that he would, he orchestrated things beforehand to work out that way. (This all makes more sense in my head than when I try to explain it.) So to recap, God could've healed Jacob, but didn't. For whatever reason, Jacob was made the way he was and God allowed that. Having known that this would happen all along, God orchestrated other events that he knew would also happen to make all of this craziness fit together somehow. So there will be good things that come out of it, but God didn't like need Jacob to die to work other things out (for a "reason").

So this leads me into my next pondering…prayer. Another friend (who also lost her baby this summer, which is how we became friends) and I were talking the other night. We were discussing prayer and wondering if there is really any point to it. Now, throughout the pregnancy with Jacob I read lots of scripture dealing with prayer. So I do believe that God wants us to pray and to present our requests to Him and to even be persistent. So I do continue to pray, yet I can’t help but wonder if it really matters b/c whatever is going to happen is going to happen regardless if I pray about it or don’t pray about it, right? I.e.: a mother, a father, a family, a church family, a community, strangers pray their hearts out for a good prognosis, for a miracle…to no avail. Now I know that God can’t just answer every prayer with a yes. I know that all of those prayers brought all of those people in closer communion with God. I felt the power of those prayers as God lavished His peace on us. However, those prayers did not change the outcome of what was to happen. So in writing this and processing it more as I write, I guess I am seeing that prayer is maybe not so much about the end result, but about the relationship and the meeting with God. And I guess another question is presented, which is, can/do/have prayers ever “changed God’s mind?” I think there are a couple examples in the Bible of God acting (or not acting) based on the pleas of his people, but for the most part it just seems like it’s already all mapped out, so brings me to the original question: What’s the point? …which I already answered earlier..b/c God wants us to and it brings us in closer communion with Him. I could drive myself crazy!!! Despite my lack of a clear cut answer, I will obey and I will continue to pray, don’t worry. =) I just thought I’d share some randomness that I’ve been thinking about lately.
…And we are doing just fine. Still miss the boy, still sad from time to time, but doing well…

2 months later, a month late

I wrote this about a month ago and never actually got around to posting it. I just re-read all of this and its interesting b/c before I wrote it, I kept thinking about these things over and over. After I finally wrote it all down, it was out of my head. It’s also interesting how feelings/emotions continue to change as time keeps going by. I thought that maybe I’d just give up on the blog, but then I read this article about grieving parents and really identified with much of it. So I guess I’m grieving normally and in a healthy way. I also realized that other people don’t understand what it’s like (who haven’t lost someone, specifically a baby) and may want to know. The other thing I realized was that there are also probably other people grieving a similar type of loss and having similar feelings, but don’t know that their feelings are similar and normal and ok. So, I post a month late. . .

Well, here we are, two months later. I don’t know if losing a baby ever “gets better.” I think it just gets different.

I guess after two months now, it seems a bit less surreal. I think it has sunken in more that I really had another baby and he really died, even though it is still strange b/c it was such a brief moment in time. At first I would be really sad whenever I would think about the day we had to say goodbye to Jacob and just how sad all of that was in and of itself. Now it’s more like I just randomly get sad for no specific reason. I could be fine one minute and then the next just feel sad. Weird…

I also realized that even though I know (I think) Jacob is in a perfectly great place, there is still this mama part of me that wants to make sure he’s taken care of. Like sometimes when I pray, I ask God if he’ll hold and rock Jacob for me. And even though I know that he isn’t really at the cemetery and it’s just his body, I feel like if we left Muncie that we’d be leaving him behind. I know that is kind of silly, but I’m just telling you what goes through this mind of mine. =)

There is also this anxiety when it comes to being in public or attending some event. I haven’t let this keep me from doing things, but sometimes right before I arrive somewhere, all of a sudden I realize that someone might ask how my summer was or how many kids I have or maybe remembered seeing me pregnant. I don’t want to just drop a bomb on someone and be Debbie Downer, but I also don’t want to not acknowledge Jacob’s life. So sometimes it’s hard to know how to answer those questions.

Sometimes I’m just so over being sad. I know it’s okay to be sad and I can’t help being sad and it’s perfectly understandable as to why I would be sad, but I just get sick of it sometimes. I also feel like I’m now known as “the girl whose baby died.” This could all just be my perception, but I want to still be able to be viewed as a normal person whom it just so happens lost a baby. I think that people aren’t sure what to say. Should they bring it up or should they not? Will it make me sad? If you are one of those people, I completely understand and I would probably be the same way. I am actually really bad at ever having anything “good” to say when it comes to comforting someone. I’m always at a loss for words and frankly just don’t know what I could say. Some people are just naturals at that. If you are not a natural, like me, here is some insight as to how I feel about such encounters: 1. It most likely won’t make me sad if you bring up Jacob or ask how I’m doing. I actually don’t mind answering questions and doing so even helps me process how I am actually feeling out loud. 2. I like to be able to reference Jacob or talk about him just like I would any other kid of mine without it being like he is a taboo subject. 3. Not that our time together always needs to revolve around this topic, but not acknowledging it ever makes me wonder if the person felt it would just be too awkward or were worried about my reaction or if he/she just didn’t care enough to ask.

We officially decided on a grave marker. It will be much nicer having a marker with his name and not just a little patch of newish sod. It should be installed before fall is over.

If you’re interested in the medical stuff, read on, if not, you can skip this. =)

I called this week to ask about the autopsy results. We basically didn’t get a whole lot of new information. There were some “puzzling” things, as the doctor put it. The most common reason for hydrocephalus is a narrowing or blockage in the aqueduct b/w the 3rd and 4th brain ventricles and is what we all presumed was the reason for Jacob’s because he didn’t have any signs that come with the other reasons for hydro . However, the autopsy showed that the aqueduct wasn’t too narrow or blocked. So we just don’t know what the cause was, which is weird. Another puzzling thing was that he had iron deposits in his liver. The Dr. said he’d never seen this in a baby and was usually only seen in people with anemia that have had lots of blood transfusions and get an overload of iron. Also, his brainstem was fully formed, but the doctor thought that all of the pressure from the fluid probably caused it to not function properly which would mean it didn’t tell the lungs to do the breathing movements in utero which led to the lungs being small/underdeveloped. They’re still going to look into it a little more and run it past some genetic counselors and see if there was some “global” condition he had that all of his anomalies were linked to. Since there are so many unknowns, we still don’t really know if it is genetic and what the chances of having another baby with similar issues. And to be honest, in my mind, I don’t really think about that too much b/c: A.) We’ll just trust God and B.) I think that the chance is totally worth taking if we did have another healthy baby. We were anxious to hear the autopsy results, somewhat out of curiosity and somewhat for future kids. I guess we’ll just have to settle for maybe never knowing and that’s okay. (Since then another genetic counselor called and said they still couldn’t come up with anything.)

Wow, so that was a lot of info and a LOT of different topics. Maybe I should post more frequently so there won’t be information overload!!!! I guess we just weren’t sure whether to keep this blog going or not. . .

Now I Lay Me Down To Sleep

When we were in the NICU there were a few huge photos of some babies on the wall in the hallway. Each picture frame had a sort of collage of the baby when it was in the NICU and then another image of the child at an older age with a little bit of their story and what they overcame. Well, Miami Valley is expanding their NICU and doing this big renovation. They want to put up something for Now I Lay Me Down To Sleep and asked if they could put pictures of Jacob on the wall. Brandy, the photographer who took the photos of Jacob, called a couple of weeks ago and told us what MVH wanted to do and asked for our permission to use the photos there. Of course we'd be honored to have his photos on display. She also mentioned that whenever she has been back at MVH the doctors and nurses will mention Jacob and how he/we touched them. So that’s always nice to hear. =)

I had sent a couple of little wallet sized photos in a couple of the thank yous to the doctors and nurses. I know that they have photographers come in, but I don't know that they actually ever get to see the photos that are taken. So, I'm really glad that they'll have something up about NILMDTS now since it's such a great organization. We're soooo thankful to have those memories of Jacob captured and now hopefully more parents in our situation will be blessed in that way also.

One month later. . .

It’s already been a whole month since we lost little Jacob. It all still seems a bit surreal. We were walking through the cemetery a couple of weeks ago looking at grave markers. Who would’ve ever thought young parents like us would be walking through a cemetery picking out a grave marker for our child at age 28? Based on all of the graves, apparently it happens way more than we realized. It’s strange to me how life just goes on. I often feel like I don’t know what to do with my life now. It isn’t so much because I’m just too upset or distraught to function. It’s more of the fact that for the past nine months I had been envisioning and planning what my new life would be like with two kids, getting two kids ready, taking care of a newborn and a toddler, etc. Now I have to re-route, I guess.

I’m surprised by how much I miss someone so much that I really never even got the chance to know. I barely got to hold Jacob, but I miss holding him and miss his sweet face. I’m so thankful for the photos that were taken that I have to remember him. I often wish he were here and I had the chance to raise my second son and that we were going to get his one month photos taken. I am also reminded, however, that I really don’t even know what the quality of his life would’ve been like if he would’ve made it. I wonder if it would be more difficult to have him here with me but not get to communicate and interact with him than for him to not be here at all. This gives me perspective and helps me understand our merciful God a little more. I am comforted by the fact that God has Jacob with Him where he is now whole instead of him possibly living on this earth bound by a brain and body that didn’t function properly. I was checking on the hydrocephalus chat board the other day and there was a mom who had posted about her son throwing up (indicating a shunt malfunction) and having to take him to the hospital right away. His ventricle had collapsed and he had to have an external shunt temporarily and the possibly two more shunts placed. Even though I miss Jacob, reading about that made me thankful that I don’t have to go through all of that panic and worry and that my baby doesn’t have to go through all of the pain and surgery (even though I would’ve done it in heart beat if I had the chance). It’s such a strange phase to be in. One of longing for what I can’t have, yet accepting that I don’t have it (him) because I know this is how it’s supposed to be.

I guess the point of this blog entry is to give a little insight on how I’m doing. For the most part, I really am doing pretty well. I’m generally in good spirits and enjoying this new life although a piece seems to be always missing. I have a beautiful, sweet little boy that I’m grateful for and a wonderful, caring, fun husband. Water leaks out of my eyes way more that it ever has and I sleep on a wet pillow a few nights a week. Other than that, things are pretty “normal.”

This weekend my sisters-in-law came to town and planned a special day of pampering. Lunch at Tea in the Country, facials, manicures, girl talk. . . It was a nice relaxing day. We then had dinner and cake for Scott’s 29th birthday! It was great to have them here and to help me not think about the fact that Jacob would’ve been one month old. Everyone has been so sweet and thoughtful in the different ways they have encouraged us and gone out of their way to make us feel special and loved. We are ever so grateful.

Eulogy & Poem

...Here's a eulogy written by my brother Steve and read by him at the cemetery. Below that is a poem written by my sister, J'Nelle.

Eulogy for Jacob

Thirty-three hours. That’s about how long Jacob was with us. He never let out a sound, yet his presence had a profound impact on family, friends and strangers. Reflecting on the past week, I found myself amazed that a life that is measured not in years or months or even days, but in hours, could bring about so much emotion. Jacob brought out our love and our sorrow; our hope and our fear; our sympathy and our empathy. He brought out the prayer of those who would never see him and the compassion of those who were blessed to meet him. I saw the tears from friends and coworkers at the mere thought of losing this precious child. I saw the love of parents for their own children as they heard Jacob’s story. I read the words of encouragement sent to Scott and Kira as they dealt with this difficult circumstance. I saw people reaching to God to help them understand and cope. I realized that Jacob’s life brought about an outpouring of faith. The extent of Jacob’s impact, or rather God’s impact through Jacob, has been far reaching and powerful. As the news of Jacob’s condition spread, I witnessed the outpouring of words of faith in God’s reasoning; faith that God had big plans for this tiny little boy’s brief life on earth. As we reached for God’s guidance and for clarity in understanding His design, we prayed for His influence on the doctors and hospital staff as they cared for Jacob. Ultimately, we prayed for peace for Scott and Kira as they began the grieving process. We prayed that they would find a sense of comfort in their time of despair. Isaiah 49:13 tells us “…the Lord has comforted His people and will have compassion on His suffering ones.” God will comfort us in the sorrow and sense of loss that so overwhelms us in times of grief. Many of us sought the reason for all of this. How can this be right? How can God’s plan take this life away from such loving parents? In His compassion for His people, God seemed to present a glimmer of understanding after Jacob’s passing. The news that, in spite of his weak state, Jacob’s heart was strong. Strong enough, in fact, to be used to save the life of another parent’s child. Maybe this was the “why” that we all sought. Maybe it was only part of the story. Certainly, it was an answer that was needed to comfort Scott and Kira. Of course, this doesn’t erase the pain, but it reminds us that God’s plan is right and is often just too big for us to comprehend. I have taken from this the belief that we can all find a reason in Jacob’s story. For some, it has brought renewed faith. For others, it has brought appreciation for family and loved ones. Jacob’s life and how Scott and Kira have dealt with his death have drawn many to grow closer to God and, hopefully, inspired some to discover God’s love. For me, it has driven a stronger sense of purpose and a greater connection to God and family. It is my hope that everyone who has been touched by Jacob’s story will find the answer that they seek and use the experience positively. Let Jacob’s time with us be a catalyst for growth, understanding, compassion and faith. Let it drive us to care for those around us. Use it to help make a difference in this world. By trusting in God’s plan for Jacob’s life, we can honor his memory for more than mere hours. By finding strength in Jacob’s story, his memory can live for a lifetime.

Jacob’s Heart

God has a plan, and His will is right.
We hold these promises as true,
But oh how our souls become heavy
With just the thought of you.
We saw your precious nose and lips
And even held your tiny little hands,
Yet you were only ours for a time
In this world of ever-shifting sands.

While we waited to hear the outcome,
God held your heart so strong.
He knit you with precision,
For His plan was perfect all along.
Our precious baby Jacob
Into this world you came
To give amazing gifts to others.
God knows each and every name.

With heavy chests and sobs of sorrow,
We consider our great loss,
But our eyes are turned toward heaven,
Where we find peace in He who endured the cross.

Today was Jacob's funeral and it brought with it an important step in the closure process. We had been going back and forth on whether or not we wanted to see him in his current state (it was closed casket), but in the end, we just realized there could be regret either way so we might as well go for it. We did, and it was a healthy step for us. Seeing him like that was difficult and sad, but in a weird way it was good to see the lifelessness about him. ...just kind of confirming that he's no longer with us on earth.

There is much we could write about today, but we'll leave you with the words that we tried to speak to those at the service.

Thank you for being here and walking through this with us. When we think about losing Jacob, we are heart-broken over the hopes we had for his life… getting to see him grow up with Brody, seeing his personality develop, which one of us he would more closely resemble, and the kind of man he would one day become. We will always wish we could have had more time to know him, and we will always wonder, what if.

Yet, we are so thankful for the 33 hrs that we had. We are grateful that he held on through nine months of pregnancy so that we could meet him, even in his imperfect state. We are grateful that another child my have life through his donated heart valves.

We are grateful to have loving and caring family and friends at our side. You have given us overwhelming support, prayerful encouragement, and perspective. Often, it has been your acts of selfless compassion and sympathy that have brought us to
tears.

Yet, as amazing as this support has been and as grateful as we are for family, friends, even this church, we know that it would all fall short if we did not have an abiding faith in and relationship with Jesus Christ. It is the truth of His word that gives us hope. Even in our sin and shortcomings, our questions and our doubts, He remains steadfast in His grace, and it is the promise of eternity laid out in His Word that brings us great joy for Jacob. He has been set free from the long list of challenges that bound him on earth, and one day, we will join with him again and have all of the why’s of God’s sovereign plan unfold before our eyes.

Thank you being here to meet and say goodbye to Jacob.