Baby Jonathan Edwards

Happy 2nd Birthday Jonathan

2009-11-04T07:51:00.003-06:00

We miss you Jonathan and think of you all the time. The LORD in time surely heals. Our family is growing in the LORD in maturity and healing from the loss of Jonathan. We are increasing in emotional and spiritual health trusting in the LORD for his goodness. Having been blessed with another son, we miss Jonathan in a different way than before. When we hold Adam and spend time with him, we have a feeling of what it is like to have a son and cherish in a sweet way what it would have been like to nurture Jonathan. God has flourished our family, but there is still that feeling of someone missing that can never be replaced. We look forward to being reunited with you Jonathan in our glorified bodies with the LORD. Until then, we await and yearn to be with Jesus and our son as the Scriptures say:

Romans 8:23
And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies.

Jonathan is a Big Brother

2009-05-25T08:20:00.008-05:00

The Lord graciously gave us another baby boy.

Adam Drew Edwards

Born May 7, 2009 at 8:48pm

8 lbs and 11 oz and 21 - 1/2" long.

Praise the Lord for His wonderful gift! His lovingkindness is everlasting!

Happy Birthday, Jonathan!

2008-11-04T06:27:00.002-06:00

Today, Jonathan has been in the Lord's arms for 1 year. Talking about time spent with the Lord seems irrelevant as He surpasses all measures of time and space, but that's all we earthly creatures have to go by.

Wow, we've come a long way in 12 months, praise God! My thoughts these days are spent more on thinking of Jonathan in his perfect state and perfectly cared for in Heaven. Lately, I've been thinking how gracious it was for Jonathan not to have to experience the pain he would have in this world, and I am thankful for that now. So, although we miss him every day and the wounds aren't completely healed (never will be), today we celebrate his life. His soul still lives, so today he is 1...not, he would've been 1...he is 1 year old.

Jonathan will be a big brother in early May! We are praising God and so thankful that He has blessed us with a healthy pregnancy. His timing is always perfect, and I can say that carrying life in my womb is really helping me cope during this difficult time of year. Lord willing, we will hold another precious blessing in our arms come spring.

Feeling good...for the most part :)

2008-09-05T05:38:00.002-05:00

I just want everyone to know that we're doing well. Life has been so busy, there hasn't been much time to blog. But for all of you who are far from us, please know that God is really healing our hearts and mending our family.

"God is good. His steadfast love endures forever, and his faithfulness to all generations."
Psalm 100:5

A Timy Glimpse of What He's Doing

2008-07-24T06:08:00.002-05:00

God has really been showing me my fears. Sure, they're all the normal fears most people have, but I never acknowledged they were there before. I'm afraid of something happening to the girls, but most of all I'm afraid of losing my own health and ultimately death. Birthing Jonathan as a stillborn baby forced me to, literally, come face to face with death.

All of the anxiety filled days and panic attacks have had an underlying theme. When I look deeper and really listen to why I'm feeling anxious or what started the panic attack, it is always thoughts of losing my health, which always lead to death. I had to ask myself why I was so afraid of dying. I'm a believer and I know the promises God has for me, for everlasting life in Heaven, and on the New Earth with Christ as king. As I really searched my heart, I noticed that the fear of death had always been present, but I was great at suppressing it. So, as I had to really start dealing with anxiety, the fear of death was brought to the forefront as the cause of it all.

"Ok, so why?" I kept asking myself. God revealed to me that even though I say I believe all of His Word, apparently I don't. There is unbelief in my heart. I can't see or come close to imagining the "afterlife" for eternity, and that freaks me out! So once again this points to my lack of trusting God. It seems like everything in life always gets back to the question, "Do you really trust God?" And, like all people, no I don't completely trust God....but He's working on me.

For the past couple weeks, I've been confessing my unbelief and asking God to show me how to overcome it. And He gave me the answer, which I had all the time, but this time I listened. Last Saturday afternoon, while I was putting laundry away, I was singing Holy, Holy, Holy, and the words just struck me as never before. I need to be focusing on our Holy God and knowing Him more fully. Too often the focus has been on myself, and that brings no comfort. The same day, I just happened to open to Psalm 78, which is a wonderful recount of how many time God delivered Israel in spite of their grumbling and constant idol worshipping. I thought to myself, "Man! That's our God right there, my God, my Deliverer...how could I ever doubt him?"

So, praise God for my anxiety and panic attacks! I'm serious, even though I hate going through them, I'm thankful for them because of how God's using them to conform me and sanctify me. He is our faithful God whose steadfast love endures forever!

Thanks

2008-07-09T10:13:00.002-05:00

Thank you all for your prayers for Charles Robert. Thankfully, he hasn't had to have the delicate heart surgery yet, but he will need it in the next few weeks. Please continue to pray for the doctors and for his family.

Thank you all for your lovely comments and encouragement. They penetrate my soul in an uplifting way. Praying for all of you too!

Happy 4th to America and to Jonathan!

2008-07-05T07:15:00.003-05:00

Happy Independence Day to America, and Happy 8 month Birthday to Jonathan! I can't believe it's been that long. This time last year, we were awaiting the results of my amniocentesis. How much easier that was! Sure, we were filled with angst, not knowing what to expect, but we still had hope that little Jonathan might live (on earth). Now, that the Lord has unfolded Jonathan's destiny, life is so different. No longer can I live on the surface or wear the masks our society so loves to put on. Fear, which often comes in the form of anxiety, sometimes grips me. Thoughts of my girls' lives being in danger, or dreams of us losing our girls enter my mind regularly. It's not that I really believe that will happen, but it's realizing that it could happen. Anything could happen. I am helpless and have absolutely no control in this world. If the Lord ordained it to come to pass, it will. The Lord's will be done on earth and in Heaven. Yes, it's harder for me to pray that prayer, knowing that His sovereign will can sometimes be so extremely difficult to accept.

Immersing myself in the Word, and prayer are the only ways to combat the fear. Last night, I laid down and thought I was ready to sleep, except I just felt nervous and uncomfortable and scared. I had to just talk to God and tell Him how I was feeling, confessed some things, and asked for His strength. I came to the conclusion that I had barely opened my bible in 2 days and I had on no armour to fight off the fear and anxiety.

That being said, isn't it ridiculous that I still wish I could go about my day, staying busy with the kids and household work, and running errands, all the while being oblivious to these things God is so overtly trying to teach me? That's my sin nature and my tendency to stuff things instead of dealing with them, I suppose. It's also because going through these life lessons and grieving is hard work and painfully tolling.

To all the T18 mommies, I am praying for you, in all the various stages you're going through. I have a prayer request to pass on. My dear friend's sister just had her first baby, who was expected to be healthy. Little Charles Robert (2 days old) was rushed into heart surgery yesterday morning. Please pray for this family and for Charles Robert. Thank You!

Comfort and Counsel for the Griever

2008-04-14T09:42:00.021-05:00

The following post is from my (Jared) notes from a class I took with Dr. Ed Welch (http://www.ccef.org/) the author of a best selling Christian book "When People Are Big and God is Small." He is a Christian Counselor with a lot of study in Psychology, Theology, and the Bible. He has written books "Depression," "Blame It on the Brain," "Addictions: A Banquet in the Grave", his most recent book "Running Scared: Fear, Worry & the God of Rest", and many other books and articles in the Journal of Biblical Counseling (http://ccef.org/jbc_intro.asp). His ministry and CCEF is known for what is called Biblical Counseling. I find their resources to be the best we have on counseling and shepherding. (This is just me personally). They are passionate and adamant about the fact that the Scriptures has something to say about every human struggle. That includes obscure experiences with terminology in secular psychiatry such as OCD, ADD, Bi-Polar, Anorexia, Bulimia, etc. They show that the Scriptures speak to all of the issues that under gird these experiences with complex secular psychiatry and medical terms.

I said all that to say that I am appalled at mainline evangelicalism's view of grief. My experience in the last six months to a year, with the understanding I am beginning to learn now, I feel that very few people have a correct biblical, theological, and practical understanding of grief. I have talked to many in the church which includes those who claim to be scholarly and biblical. I feel that evangelicalism needs to beefen up on their theology of grief so they may walk alongside these people who are suffering and understand their pain. I am not about to say that I understand, and have all the right answers, but only a few individuals have been able to explain this biblically and describe our experience. The ones who understand are usually among those who have gone through this experience themselves, or who counsel those who have experienced traumatic losses on a regular or daily basis. I feel that we as lay people, and I am speaking to myself as well, should make an effort to make more room for people in our lives so that it is not just the professionals and expert counselors who can counsel people biblically on grief.

These are not exact quotes, but notes I took on my laptop from the Human Personality class, and my conversation with Dr. Ed Welch few weeks ago, and my own conclusions drawn from premises spoken. Also, this is not all there is to say on the matter.

He is speaking in the context of a case study in Yalom's book "Love's Executioner", the chapter on Penny who lost her 9 year old child to Leukemia.

The magnitude of difference between the grieving the husband/father experiences from the wife/mother is so great that people get divorced when there is a loss of a child. This is what happens in the secular and even the professing Christian world. This should tell us something about the nature of the grieving mother and the effort that needs to be given by the husband to understand. If extreme effort needs to be taken by the husband to understand the grief sufferings of his own wife, how much more the griever's comforters!

She feels as if she is frozen in the time museum of the moment of the trauma she experienced of her loss. Looking outside the windows, everything outside the museum presses on and continues in normality in every way, except for the life of the griever. As much as she tries to presume her normal activities, her life will never be the same.

How may we help her? Grief and sorrow is a pivotal place in ministry and you can blow it easily. First, you may not be welcome. Approach her in a gentle manner and do not jump in her lap (figuratively speaking - pouncing next to her in a vibrant, energetic manner). Remember she gets overstimulated easily. This applies to church and public places. Ask before you come by or enter her home. Her abode is her space and she feels this her only base of safety in a world that is overstimulating and not understanding. This is the place she retreats to for shelter from the world and to be alone. It is a place of comfort and healing.

Walking along side her in this trauma of her loss takes a long time. Do not try to rush her along in this experience. Have her pick out one Psalm that represents the cry of her heart. Have her own that one Psalm. She does not need exposure to the breadth of Scriptures. Truth must be positioned appropriately and in small doses. One verse at a time, meditate on it, and own it.

Ask have you talked to God about this? You don't want this time of sorrow become a dark place that cannot be touched by the gospel. Gently lead her from looking down and in the horizontal, vertically to the God who created this personal universe. Calling out to God in this personal universe is essential. Have her pray herself. If she cannot, walk along side her, read the Psalms to her, and let her listen to you as you pray for her in this time that she begins to look heavenward. Do not rush her, grief is part of the process of healing. Grief is not our enemy, death is. God is grieving with her. See John 11 on how Jesus wept and was deeply moved. Even an omnipotent God is moved and angry by the phenomena of death. Read the Psalms to get an understanding of her grief and anger.

Asking her to search her heart for idolatry, rebuking her for her anger, calling her to obedience is not to be emphasized or to be a main theme to help her in the grieving process. Beware lest you kick her when she is down. She is experiencing traumatic suffering. The Holy Spirit will take care of conviction. Anger at God is never right since he is perfect, good, and holy in his sovereignty and providence. But anger at God and questioning his purposes is a real phenomena that is expressed in the Bible. I believe the way David deals with his anger and questioning God is right and biblical. That is because he is not in rebellion but he is Godward in his orientation and it ends in praise. God was walking him through the process in his love, patience, longsuffering, and gentleness. We should learn from God when dealing with the griever. God left those Psalms in his inspired, inerrant, infallible word for a reason. (See also Jeremiah questioning God in his purposes in Lamentations). Comforters are sometimes quick to rebuke the griever for this real experience. She is dealing with the real cries of her heart in this fallen world full of death.

Panic and anxiety attacks in the midst of grief are not uncommon. The body is going through the grieving process as well as the soul or spirit. We are embodied souls. The soul or spirit is intimately connected with the body. The body is communicating that you have been through trauma. Trying to resume your activities as if nothing has happened, your body will speak a language which could be panic attack. There are seismic reverberations in the physiological that the body experiences from the past physical and emotional trauma. You have been in close contact with death and you begin to consider your own death. It is fearsom to depart from this world which is all you have known in your five senses. The thought of your bodies returning back to the dust and your spirit to the Lord who gave is a fearsome experience (Ecclesiastes). Panic or anxiety attacks are a way our body responds to our fear, grief, and anger towards death.

Lastly, and again this is not all there is to say on the subject. A multivolume work can be written on grief. I would like to speak to the expectations placed on a griever. The funeral is not the closure or ending of the grieving process but only the beginning. It is amazing that people actually believe this. A realistic time frame of grieving is not a month, 6 months, or even a full year. If the grieving process for this type of trauma is dealt with in a healthy and biblical way, receiving good counsel and comfort, a more realistic time frame can be more like 2-4 years. Also we need to realize that we never completely get over the loss until we reunited in heaven with the Lord and the loved one. I say this knowing that everyone grieves differently, and the aspects, faces, stages of grief are different in each person's experience. It varies from person to person and experience to experience.

Be patient when walking along side the grieving person. It may take several months or a year before the griever resumes her responsibilities in the church. Bible studies or even one Bible study may be too much to handle. See what was said above about the position and dosage of truth. The griever may be stuck one verse at a time for a while. The breadth of Scriptures at this time may be too overwhelming and overstimulating. Grieving is hard work. She can handle only a little at a time.

Resuming her serving responsibilities is to be evaluated and determined at her pace not yours. Also, being around newborn babies or talking about babies may not be the best thing for her at this time. Be sensitive to that also.

There is so much more to say. I plan on sending something out soon on corporate worship for the griever. But these concepts are all that was discussed in class and my conversation with Dr. Welch. Some were direct concepts spoken, some were my own conclusions, and practical out workings of these concepts.

Practically speaking what can comforters, friends, family, brothers and sisters in Christ do? Sometimes asking the question "what can I do" is not helpful. You can always ask but many times the griever does not know what she needs. Since grieving is hard work, removing some of her responsibilities is always helpful. Show up with a meal. If you are worried about invading her space, place the meal on the doorstep, ring the doorbell, wave and leave. If you do not want to invade her with a phone call, send her an e-mail. Ask to come pick up the kids for a few hours so she can be alone. Do grocery shopping for her. Being in a crowded, loud, lit up, public place can be overstimulating and trigger panic and anxiety. Pick up her money and grocery list at the door. Other things such as yardwork, washing the car, and misc. errands, can be helpful. It is amazing how taking care of practical things can help her spiritually through the process. Remember that grief is emotional, spiritual, and bodily. We are embodied souls connected to both realms. You are helping her tremendously - emotionally and spiritually, just by giving her help with chores of life that seem minute compared to magnitude of aid she needs to overcome her loss.

Now I said all that not that we personally need these things. I am speaking to grievers in general so that we, even us, will know what to do to minister to those who experience a loss in the future. This is not really a cry for help on our end, but a cry for a change in our thinking. Let us look at Scripture and deal with this sensitive area of grief in a biblical manner.

P.S. Don't be afraid now to comment on our blog :) with the wonderful comforting and encouraging words that you already posted. They have been very encouraging. This is not directed at any individual, but our view of grief in evangelicalism in general.

Breakdown, Breakthrough

2008-04-04T15:12:00.002-05:00

Yesterday I had a panic attack that led straight into a necessary emotional purging. I took the girls to the gym and as soon as I got up to the busy and very loud exercise floor I started to feel the anxiety. Thinking I could fight it off or keep it at bay like I have done so many times, I sat down to stretch a little. After 10 mins, I was able to get on the bike for a couple of mins, but it started creeping up so fast I had to get out of there. Only by the grace of God was I able to get the girls out of the child care center before I lost it. As we were walking out of the door, a sob would squeak out here and there, but I would just pray, "Dear God, please don't let me lose it here, because I don't know anybody and my girls are with me!". I felt a release coming. There was no way I could make it home, so I drove about 1 block to my church. I knew 3 of my closest friends were there having a book study, which I dropped out of a couple weeks ago. As soon as the girls were safely deposited into the nursery and I was safe with my 3 Christian sisters in a room, it all came undone. I sobbed and sobbed and it felt like it would never stop. The weeping was so intense I started hyperventilating and it continued on like that for about an hour. They read Scripture and prayed over me. The Lord would calm me for minutes, then it would all start again.

It felt like it did when I was stuck during Jonathan's labor. When I was on my side/back squinting up at Debra trying to figure out when I was contracting and when I wasn't since the Pitocin felt like one big cramp. I was hyperventilating and in a fog just trying to make sense of what my body had to do. I practically relived it yesterday..all except for the contractions. And God carried me through it just like He did on Nov 4th. That's the other thing I realized during the panic attack...that it was April 3rd and he would be just about 5 months old. There's something about the weekly/monthly cycle that my body is so in tune with. If I have forgotten that it's a Sat or Sun, or the 3rd or 4th, my body always reminds me, usually by way of anxiety.

I was so weak, my friend had to help me to the bathroom. All I could do was lay on the table, cry, and shiver. It's amazing how all my strength just disappeared. Jared came from work and took me home and the girls went with Debra for the day. Jared and I spent the day talking, reading the Bible, and praying, and generally trying to make sense of this anxiety I've been dealing with.

I made a much needed confession to God, repenting from the running I've been doing. Up until now, any time I've felt the Spirit lead me to read or pray I have done absolutely everything in my power to resist trying and to intead, harden myself. After 5 months of that, it finally boiled over into my "nervous breakdown". At least I am "getting right" with God again, although it's very slow. Yesterday, the only relief I could find was in the Word and prayer. Why oh why have I been running? Yes, I've been mad, but more is that I've been intentionally turning my back to the direction God has been pointing. I was Jonah. Even in my rebellion, I am Christ's daughter and He has continued to pursue me because I am His. My strength has definitely failed me and it has made me realize my dependence. Today I'm shaky and I'm sure I'll continue to have anxiety as I have been through an emotional, psychological, and physical trauma. But now, instead of turning to the phone, tv, computer, or chore, I'm turning to God, my Father.
Thank you for your prayers.

Psalm 38 - so much how I feel

"O Lord, rebuke me not in Your wrath,
And chasten me not in Your burning anger.
For Your arrows have sunk keep into me,
And Your hand has pressed down on me.
There is no soundness in my flesh because of Your indignation;
There is no health in my bones because of my sin.
For my iniquities are gone over my head;
As a heavy burden they weigh too much for me.
My wounds grow foul and fester
Because of my folly.
I am bent over and greatly bowed down;
I go mourning all day long.
For my loins are filled with burning,
And there is no soundness in my flesh.
I am benumbed and badly crushed;
I groan because of the agitation of my heart.

Lord, all my desire is before You;
And my sighing is not hidden from You.
My heart throbs, my strength fails me;
And the light of my eyes, even that has gone from me.
My loved ones and my friends stand aloof from my plague;
And my kindsmen stand afar off.
Those who seek my life lay snares for me;
And those who seek to injure me have threatened destruction,
And they devise treachery all day long.

But I, like a deaf man, do not hear;
And I am like a mute man who does not open his mouth.
Yes, I am like a man who does not hear,
And in whose mouth are no arguments.
For I hope in You, O Lord;
You will answer, O Lord my God.
For I said, 'May they not rejoice over me,
Who, when my foot slips, would magnify themselves against me.'
For I am ready to fall,
And my sorrow is continually before me.
For I confess my iniquity;
I am full of anxiety because of my sin.
But my enemies are vigorous and strong,
And many are those who hate me wrongfully.
And those who repay evil for good,
They oppose me, because I follow what is good.
Do not forsake me, O Lord;
O my God, do not be far from me!
Make haste to help me,
O Lord, my salvation!"

My Thoughts....Unedited

2008-03-27T13:28:00.003-05:00

I'm tired and I'm defeated. How long will I continue on this path? It's because of my own choices that I'm stuck here. If I could be someone else right now, I would.

Just reading back these words is eerie because it doesn't even sound like me..the me I've known for 28 years, but now I'm so much different. As my thoughts flow out on this page, it's also evident that I'm entirely self consumed, which is another great reason to wallow in my pity....not what I need. I just want this to be over, but it never will be.

It's so hard to pray. Any prayer I can muster up is out of pure frustration or anger. Sometimes it's impossible to say anything nice to God, my God who has redeemed me with His son's blood, who He gave willingly, for me. How can I be so ungrateful? How much more sin can be revealed within me? I know the answer is much more, but it's hard to handle...knowing how ugly I've been inside.

It's been almost 5 months. Is it getting any better? I can't tell on days like today. Please pray for me.

How I Really Feel...

2008-02-01T14:08:00.000-06:00

Part of the reason it's so hard to post on this blog is because I keep thinking I will get over this hump, or soon become unstuck, but that's not happening. I want to be able to write some inspirational, uplifting story about how I have been delivered from my anger and disappointment, but that's not my story. It's ok to feel mad and bitter, and I'm not going to hide it because it's real. When I was still pregnant, reading other mom's blogs got me through the day and were extremely helpful in giving me an idea of what it would be like when Jonathan was gone. So, it has become important to me to get some of my feelings out there, yes for prayer requests, but also for anyone who is about to embark on this journey.

To begin, I KNOW that God is sovereign and will use this for His glory. He is making something of me through all of this, and I will be more sanctified, closer to Jesus because my baby boy died. That's what I know. How I feel is COMPLETELY different. I am mad and bitter. It's hard to pray, to simply talk to God takes a lot of effort. For several weeks, my anger consumed me and I felt worthless as a wife and mother. Although the bitterness and disappointment are still there, the anger is subsiding, but I can only see the progress when I look back. In the midst of the week, when I have more bad days than good, there doesn't seem to be any progress and I don't feel like I'm getting any better...but I am, it's just very slow.

God is really revealing my sinful heart, as I find it difficult to rejoice with friends when they receive blessings. About 15 of my friends are pregnant or have newborns, so I can't get away from babies. I love the babies, it's just the reminder of what I'm missing that makes it hard to hold them. Sometimes I feel like saying, "Ok God, enough already. I'm ready for the cloud to lift. Couldn't you make it a little easier on me now?" And in actuality, I do say that to Him. He understands me and knows my heart much better than I do. It's taken me practically 3 months to be able to blog again because I can't figure out what in the world I'm feeling. It's hard to be honest with myself in general. Being angry, bitter, and disappointed is getting really old now and I'm ready to move to something else. Figuring out how to do that is another thing.

The Labor

2008-01-21T17:38:00.000-06:00

I've finally decided where to start with getting this all down.....Jonathan's birth. I'm one of those women who totally gets into the labor experience. Avery was my first completely natural birth in a birthing center. I used to day dream about my labor with her for months after she was born. It sounds weird to some people, but it's so very important to me how my child comes into this world. Maybe it's because I'm a visceral person, learner, and I enjoy feeling things, even painful things. That must be why I like getting tattoos and piercings. Delivering Jonathan naturally was the beginning of the healing process for me. The Lord's hand was gracefully in the entirety of the labor, and for that I'm thankful. He allowed me to have the birth I desired, just not exactly what I expected.

Sometimes, I just live in the labor/delivery room #3 at the Denton Presby Hospital. It was the most difficult birth I've experienced so far. Finally, after 12 hours of several doses of Cytotek, trying for a spontaneous birth, we started the pitocin drip. I was contracting within an hour. For the longest time, I just stayed lying down on my side in the bed, which is totally opposite of how I normally labor. Maybe that's because I walked about 6 miles earlier in the day, hoping to get some contractions going. By the time we started the pitocin, I needed a nap. There were several times when I got so scared I thought I was going to puke. Reading Scripture got me through those moments. With the lights dimmed, Jared holding me, and Delilah and Debra reading Scripture, God held me in His enormous hands and comforted me. Finally, as the contractions were building, I knew I needed to change positions, so I went from lying to kneeling over the head of the bed. The labor was so slow. I kept waiting for my body to take over, like it did with Avery, but I had to work for this baby to come. My uterus was contracting, but I felt like not much progress was being made. There just wasn't that connection between my body and my mind that I had in the past. Something would tell me I should move, change positions, etc, but I just stayed put, right where I was....kneeling over the head of the bed, taking the contractions one by one. The pitocin was starting to get to me and I wondered how long it would be before I felt the urge to push. I was praying most of the time and trying to give into the pain. The photographer who was going to take pictures of Jonathan was there and my doctor was in the room a lot, checking me, so I knew they were expecting a baby soon. I kept waiting for my body to give me the sign and urge to push, but it wasn't going to happen. I was stuck. At the time, I didn't know I was stalling until my dear friend and doula said, "It's hard to let him come and let him go." It occurred to me then, that Jonathan wasn't going to walk out, similar to how Avery did. Jonathan was dead. Of course there was no overwhelming urge to push, because in this case the baby wasn't helping. By now I had been in labor for 4 hours and I was tired of the contractions. My doctor said he could feel his head, but that I was going to have to push...to really push. He was so small that there was no force behind him, and he was lifeless, so he wasn't innately turning or adjusting the way live babies do in the birth canal. I vividly remember the moments before I pushed him out. My squinting eyes were almost closed as I tried to determine when I was supposed to push and what muscles to use in order to do that. By that time the pitocin had me contracting so much, I couldn't tell when I was or wasn't. It just felt like one huge contraction that didn't let up. The time that elapsed could have been 5 minutes or 30 minutes, I couldn't tell you. I began talking myself into birthing him, and that was the only thing that got me ready. "I'm ready for him to come...I don't want to do this anymore...I want him to come now," and so it went. Never in life have I had to actively and physically give up something so precious. My son who, for 8 months, was with me, took his sustenance from me, and grew inside of me, wasn't mine after all. Once he was born, that was it...it was over. And as painful as labor is, I endured it longer than I needed to because I didn't want to stop being one with him. I knew he was in Heaven already, that his soul had passed from the sweet little body I delivered. But giving birth to his body was proof that he'd never be on this earth with us, his earthly family. The finality was too much for me.

Once he was delivered, I got to see how beautiful God made him. He looked like Avery a lot, with some T18 characteristics. I never want to let go of that mental picture, but I know it will eventually get fuzzy and fade. We have pictures, and they're gorgeous, but they don't do him justice...it's only a picture. We dressed him, took clay imprints of his hands and feet, and held him, kissed him, examined him. Some of the grandparents were there and got to hold him, as well as our friends who walked through those dark hours with us. The best part was watching the girls hold him. They loved him and were so proud of their baby brother. Bringing them to the hospital to see him was the best decision Jared and I made regarding the entire birth. It was only about 1 hour before I was ready to say goodbye. The deterioration set in fast. As they were getting the wheelchair for me to leave the hospital, I told the nurse to take him to the nursery. I wanted to remember him the way he looked right after he was born, and that is how I remember him. Then we went home, just the way we came....with no baby.

Getting through it

2008-01-19T22:10:00.000-06:00

Just wanted all who were still checking this website to know that we're walking through the grief. I've tried numerous times to make a post, but find it too overwhelming. Since Jonathan's birth, Jared has been making the posts, since it's been too emotionally cumbersome for me. I hope I will be able to make a post soon, getting some thoughts out that I'd like to share with you all. Keep checking. We love you all and feel your prayers.

Tristan Hostetter

2007-12-03T22:16:00.000-06:00

Pray for Tristan Hostetter. He was scheduled for a C-section today. Pray for his health as he faces to survive on his own outside his mother's womb. Pray that God's presence would be with them as they hold their baby boy.

You can see updates here:
http://tristanasher.blogspot.com/

Poppy Joy

2007-12-02T08:02:00.000-06:00

Pray for Poppy Joy. She was born yesterday. She is the daughter of Nathan and Angie Luce and was diagnosed with T18 around the same time as Jonathan.

You can see updates here.
http://poppyjoy.blogspot.com/

Jonathan Edwards Quote on Grief (2 September 1741)

2007-11-11T10:54:00.000-06:00

It is natural for persons that are bereaved of any that are dear to them, and for all under deep sorrow, to seek some that they may declare and lay open their griefs to, that they have good reason to think will pity them, and have a fellow feeling with them of their distress. The heart that is full of grief wants vent, and desires to pour out its complaint; but it seeks a compassionate friend to pour it out before.

Christ is such an one, above all others. He of old, before his incarnation, manifested himself full of compassion towards his people; for that is Jesus that is spoken of: Isaiah 63:9: "In all their affliction he was afflicted; and the angel of his presence saved them; in his love and in his pity he redeemed them; and he bare them, and carried them all the days of old." And when he was upon earth in his state of humiliation, he was most wonderful instance of a tender, pitiful, compassionate Spirit, that ever appeared in the world. How often are we told of his having compassion on one and another! So Matthew 15:32: "Then Jesus called his disciples, and said unto them, 'have compassion on the multitude."

He was one that wept with those that wept: and indeed it was mere pity that brought him into the world, and induced him not only to shed tears but to shed his blood: he poured out is blood as water on the earth, out of compassion to the poor, miserable children of men. And when do we ever read of any one person coming to him when on the earth, with a heavy heart, or under any kind of sorrow or distress for pity or help, but what met with a kind and compassionate reception?

And he has the same compassion now he is ascended into glory: there is still the same encouragement for bereaved ones to go and spread their sorrows before him.

Afflicted persons love to speak of their sorrows to them that have had experience of affliction, and know what sorrow is: but there is no one earth or in heaven that ever had so much experience of sorrow as Christ: therefore he knows how to pity the sorrowful, and especially may we be confident that he is ready to pity those that are bereaved.

-Jonathan Edwards
The Sorrows of the Bereaved Spread Before Jesus
2 September 1741

Our Only Comfort in Life and Death

2007-11-08T08:48:00.000-06:00

What is your only comfort in life and in death?

That I am not my own but belong — body and soul, in life and in death — to my faithful Savior Jesus Christ. He has fully paid for all my sins with His precious blood, and has set me free from the tyranny of the devil. He also watches over me in such a way that not a hair can fall from my head without the will of my Father in heaven: in fact, all things must work together for my salvation. Because I belong to Him, Christ, by His Holy Spirit, assures me of eternal life and makes me wholeheartedly willing and ready from now on to live for Him.

Heidelberg Catechism Q/A 1

Jonathan Child of the Covenant

2007-11-07T08:22:00.000-06:00

Dear Jonathan,

These promises are to you my son, my only son. They do not rest in anything you have done or have not done (Rom 9:11). But they rest on the Lord alone, His unshakeable promises, demonstrated by Christ’s work of redemption on the cross, and His resurrection. He has the ability in His sovereign omnipotent power to carry these promises out and no one can hinder Him. He is faithful and good to be true to His word.

Jonathan this promise was given even before Abraham to Adam (Gen 1-3 w/ Gen 9 echo) and Noah (Gen 9) but is reaffirmed and clearly stated in the Abrahamic covenant:

Genesis 17:7

“I will establish my covenant between me and you and your offspring after you throughout their generations for an everlasting covenant, to be God to you and to your offspring after you.”

This promise to be a God to us and our children is later affirmed also to Moses (Dt 4:9-10; Dt 6:1-10) and David (2 Sam 7:11-16; Ps 132:11-12). But most importantly consumated in Jesus Christ in the New Covenant:

Acts 2:38-39

Peter said to them, “Repent and be baptized every one of you in the name of Jesus Christ for the forgiveness of your sins, and you will receive the gift of the Holy Spirit. For the promise is for you and for your children and for all who are far off, everyone whom the Lord our God calls to himself.”

While Luke 18 uses the word “infants” and is also stated in Matthew 19, Mark has the fullest explanation where Jesus scoops the children in his arms, lays hands on them and blesses them.

Mark 10:14-16

Jesus said, “Let the children come to me; do not prevent them, for the kingdom of God belongs to such as these. In truth I tell you, whoever does not receive the kingdom of God like a child shall never enter it.” And he scooped them up in his arms, laid his hands on them, and blessed them.

Now looking back from this particular verse to the OT, we see this reality expressed in David's grief in the death of his son,

2 Sam 12:22-23

22 He said, "While the child was still alive, I fasted and wept, for I said, 'Who knows whether the LORD will be gracious to me, that the child may live?' 23 But now he is dead. Why should I fast? Can I bring him back again? I shall go to him, but he will not return to me."

So Jonathan, this is our comfort and hope. It rests in God alone. In this we rejoice that you are with the Lord and we will see you soon. Jonathan, you are no longer suffering in the condition rendered to you from the Fall, but are now in the Fathers hands. You rest in the Good Shepherd’s arms as you are His little lamb.

John 10:11, 27–30

I am the good shepherd. The good shepherd lays down his life for the sheep. My sheep hear my voice, and I know them, and they follow me. I give them eternal life, and they will never perish, and no one will snatch them out of my hand. My Father, who has given them to me, is greater than all, and no one is able to snatch them out of the Father’s hand. I and the Father are one.”

Light shining out of Darkness

2007-11-06T13:30:00.000-06:00

God moves in a mysterious way
His wonders to perform;
He plants his footsteps in the sea,
And rides upon the storm.

Deep in unfathomable mines
Of never failing skill,
He treasures up his bright designs
And works his sovereign will.

Ye fearful saints, fresh courage take,
The clouds ye so much dread
Are big with mercy, and shall break
In blessings on your head.

Judge not the lord by feeble sense,
But trust him for his grace;
behind a frowning providence
He hides a smiling face.

His purpose will ripen fast,
Unfolding every hour;
the bud may have bitter taste,
But sweet will be the flower.

Blind unbelief is sure to err,
And scan his work in vain:
God is his own interpreter,
And He will make it plain.

William Cowper
(1731-1800)

------------------------

Dear Jared,

You two have been given a great burden and I pray the Lord will help you greatly to know that he knows the ways he takes, even when his footsteps are planted in the sea and it is so hard to discern their direction.

Sinclair B Ferguson

Funeral Service & Flowers

2007-11-05T16:19:00.000-06:00

The funeral service is Saturday, 10am, November 10th,

Christ Presbyterian
3410 Peter's Colony Rd
Flower Mound, Texas 75022

The graveside service will be immediately following at

Roselawn Memorial Cemetery
3801 Roselawn Drive
Denton, TX.

For those would like to send flowers for Saturday's service please call:

Lewisville Florist
972-436-4502

(Any florist will be fine. We just wanted to make it convenient)

Or you can deal with the funeral home directly

Mulkey-Mason
940-382-6622

Jonathan born 12:47am Sun Nov 4th

2007-11-04T07:15:00.000-06:00

Jonathan was born at 12:47am at 3 lbs and 16 in long. We went home around 2am (after setting the clocks back). We had a wonderful time of visitation of close family members and took many pictures. Mother is doing great physically. No tears or complications. We are seeking the next several days to get some good rest and repair physically, emotionally, and mentally. We will keep you posted how we are as we are able. Thank you so much for your prayers. God's presence and comfort was intimately present through the service and care of His people. His grace was immense through this time of grief. He is so good and has sustained us through this as He has promised. I know there is much more to come, but we praise Him and trust Him because He is faithful.

Jonathan Goes Home to Be With The Lord

2007-11-03T18:58:00.001-05:00

When we arrived at the hospital this morning, he did not have a heartbeat. We have not had the baby yet as we have labored with Sidatech (sp?) all day and have received few contractions. We are now doing a little Pitocin (sp?) to see where that takes us. Please pray that Jonathan comes soon and we can hold our precious son who is now with the Lord. Thank you for your prayers. We are doing well after a good cry and prayer. We will keep you all updated.

In Christian Love,
Jared and Kristin Edwards

Tribulation Produces Endurance-Character-Hope

2007-11-02T12:15:00.000-05:00

We are cashing this promise in:

1 Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. 2 Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. 3 More than that, we rejoice in our tribulations, knowing that tribulation produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

Romans 5:1-5

We Have Decided....

2007-11-01T03:23:00.000-05:00

Jared and I have decided to be induced on Saturday. Hopefully, the induction is successful. It will be more difficult to get my body to go into labor, being that Jonathan is small and my body isn't ready yet. Most of my anxiety right now is about the labor process itself. I enjoy the natural birth experience and would like to at least have that with Jonathan, the way I planned it, however when induction is in the mix, you don't always get the results you want. We'll just pray that God is merciful and we'll keep all of our options open as this is not a normal pregnancy.

Jonathan may be born with a heartbeat, but it's most likely that he will not have a heartbeat at birth. Since we anticipate this, we're firming up funeral arrangements so that we won't have to deal with making plans in the middle of our grief. We're tentatively planning a funeral service and burial service for Saturday, November 10. If, by the grace of God, Jonathan is still with us at that time, then Glory be to Him!

We appreciate your prayers. The end is in sight which is relieving, and mournful at the same time. The Good Lord is carrying us through.

Please Pray

2007-10-31T13:07:00.000-05:00

We are at 35 - 1/2 weeks right now. The baby's movement slowed down. Beginning last Thursday he did not move for 3 days. There has been little to no movement the last couple of days. At the checkup today, Jonathan's heartbeat is down to 100 beats per minute. It is suppose to be 140-160. Normal can be in the 120-160 range. He has not grown since our last sonogram. He is measuring 29 weeks.

We do not know what to do. Our options are either wait or induce. The doctor told us not to expect the heartrate to increase. Please pray for wisdom and clarity on what God would have us to do. It is possible that we will have a stillborn condition soon. If we induce, are we sure the baby's chances to live is better outside utero?

Met with the Neonatologist

2007-10-14T14:57:00.001-05:00

Yesterday, Jared and I got to meet a neonatologist that will care for Jonathan, as well as tour the NICU at the hospital where we'll be delivering. I feel more prepared now that I've seen exactly where we'll be and connected with the doctor, who Jared and I like very much.

We were able to ask him some questions as far as abnormalities we might encounter and their treatment. Since this doctor specializes in neonatal care, Trisomy 18 is something he sees on a somewhat regular basis, so we were able to get some answers as to what "normal" might look like. There are many stories and cases I've read about, that differ quite a bit, so I've been left wondering what's most likely to happen to Jonathan. The doctor told us that from the cases of Trisomy 18 he's dealt with, the babies will usually die within one week, and he mentioned 2-3 days being the norm. He's had a few babies who live for a few months. He also said, they're usually born between weeks 35-36, but occasionally a baby will go full term. Once in a while the baby will be able to nibble, but most require a feeding tube, and they'll teach us how to use one in the event we get to take Jonathan home with us. He assured us that Jonathan will be able to stay with us in the room unless he's having extreme difficulty breathing, in which case we would send him straight to the NICU.

Hearing these facts from the neonatologist has given me some peace, as far as what to expect. Before, I didn't know if I should expect minutes with my son or weeks. Obviously, only God knows, but I am grateful for the consultation we had. Just thought I'd pass it on to keep everyone informed.

Anxiety Sets In

2007-10-13T03:38:00.000-05:00

As I enter the 8th month of pregnancy, the anxiety is beginning to set in. All of the bodily signs that the pregnancy is in its last stages is a constant reminder that Jonathan’s birthday will be here within weeks…and it’s that much closer to all being over. One night last week, after having a lot of practice contractions, (which is completely normal for me at this stage in the pregnancy), I had a full fledged panic attack. I’ve heard people describe a panic attack feeling like a heart attack, and does it ever! Once I was able to realize it was from anxiety, Jared prayed for me and my heart slowed down. But, for a couple minutes it felt like I might drop over dead. That’s an experience I never want to have again, and now, I sure can sympathize and relate to others who deal with these attacks. It made me realize that I was obsessing over what would happen if I go into early labor. My constant thoughts of “what if this”, and “what if that”, were like the white noise you don’t notice until there’s a power outage. My brain finally couldn’t take it anymore, and in the middle of sleeping, I shot up with my heart about to beat out of my chest. This was a lesson for me to stop trying to control what I cannot, or at least that’s how I’m looking at it.

It’s funny how you “know” God is in control of everything. He holds the planets in their orbits, commands the tides of the sea, and orchestrates each cell of my body to sustain life in me every second. There’s a huge difference between knowing that and letting go, or mentally giving yourself into His hands. There are so many unknowns in my life right now, so many different ways it could go, and I have to just sit back, trust God, and see what He’s ordained since the earth was formed. I’m a planner and love to have contingency plans for every situation. Jared and I have done all the research we can and have made basic plans for Jonathan. The rest is a waiting game. Since we found out about Jonathan’s diagnosis, I’ve been so grateful to know, so that there wouldn’t be the shock value to deal with when he’s born. Now, I’m dealing with the mental gymnastics involved in knowing what’s coming and living each day out without laboring over the “what ifs”.

The truth is that I’m scared of myself. I’m scared of how I’m going to react when he dies. No, I’m not omniscient and don’t know for sure when he’ll go to be with Jesus, but I know the statistics of Trisomy 18, and it looks dreadful. The closest thing to a funeral I’ve ever attended was my grandfather’s memorial service. He lived in Florida my whole life, I’d see him once a year, and he had congestive heart failure, so it wasn’t a shock when he died. It was sad, but mostly I was sad for my grandmother and my mom. But watching your own baby die…how does a person handle that? Will I be in shock, of no use to the girls? Will I freak out and break all the dishes? Will I want to drown my grief in liquor? I’m scared of grief because I don’t know it.

All of these thoughts are what has been adding to the anxiety that’s been underlying this entire time. So, I’m left to only trust in God. Dependence, humility, and reliance on Christ have been, and continue to be my prayer.

Below is a letter from Samuel Rutherford. He wrote it to a widow in the church, and the my friend read it at the baby shower. It’s comforting to me.

“It is then best for us, in the obedience of faith, and in a holy submission, to give that to God which the law of His almighty and just power will have of us. Therefore, Madam, your Lord willeth you, in all states of life, to say, ‘Thy will be done on earth, as it is in heaven:’ and herein shall ye have comfort, that He, who seeth perfectly through all your evils, and knoweth the frame and constitution of your nature, and what is most healthful for your soul, holdeth every cup of affliction to your head, with His own gracious hand. Never believe that your tender-hearted Saviour, who knoweth the strength of your stomach, will mix that cup with one drachm-weight of poison. Drink then with the patience of the saints, and the God of patience bless your physic.”
Samuel Rutherford, Letter III

And a poem another friend of mine gave to me, that helped her when she lost her husband:

He Maketh No Mistake
“My Father’s way may twist and turn
My heart may throb and ache;
But in my soul I’m glad to know
He maketh no mistake.

My cherished plans may go astray,
My hopes may fade away;
But still I’ll trust my Lord to lead
For He doth know the way.

Though night be dark and it may seem
That day will never break;
I’ll pin my faith, my all, on Him
He maketh no mistake.

There’s so much now I cannot see,
My eyesight’s far too dim;
But come what may, I’ll simply trust,
And leave it all to Him.

For by and by the mist will lift,
And plain it all He’ll make;
Through all the way, though dark to me
He made not one mistake.”

We’re still receiving cards, gifts, and encouraging letters from so many people. Thank you, all! It is so uplifting to feel the support of the saints. I often wish I could write back every time we receive a note or card in the mail, and I never can. Maybe because it’s too painful, or because we’re moving next week and I’ve been running around like crazy. Haha. But, thank you to all!

The Beautiful Gift of Comfort

2007-10-06T20:41:00.000-05:00

I want to thank all of my friends for the absolutely beautiful baby shower you had for me this past week. Until a close friend mentioned the idea, I hadn’t given a shower any thought whatsoever. It was entirely beautiful, from the flowers and candles to the food, singing, and fellowship, it was the best baby shower I’ve ever been to.

It’s easy to see how God has blessed Jared and I with so many Christian brothers and sisters who are willing to go through this trial with us. He’s even placed special women in my life, who have walked a very similar path and who are able to comfort me and counsel me in very specific ways. God’s mercy is seen as He comforts us even now, before Jonathan’s birth.

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too. If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer.”
II Cor. 1:3-6

We’ll never be able to know all the reasons God chose Jonathan to have Trisomy 18, and we’ll never be able to see all the ways He’ll work it for His glory. One concept that’s given me comfort recently is realizing that God has given this to me to draw me nearer to Him. God gave Jonathan to Jared and me to understand Christ better. Since this pregnancy, I have been able to look at the cross in a completely different light. I’m a little bit closer to understanding the suffering that took place there. That suffering, the wrath of God that Christ endured, pales in comparison to my suffering. But that doesn’t mean God doesn’t weep for me any less. Jesus, of all people understands death and is the only One fully equipped to comfort me through it. So my family and friends will be there to lean on, to cry on, and to help with our responsibilities, and that is a tremendous blessing. And much more, our Father who gave His Son, Christ who knows suffering and death and has CONQUERED IT, and the Spirit who reveals the Son, will be the ultimate comfort throughout all of this.

Glory be to God and many thanks as He continues to carry us through these anxious weeks before Jonathan’s arrival. May He have mercy on us as dark days are ahead when it won’t be as easy to remember that His plan is best. I’m anticipating the feeling of the “bottom dropping out from under me” and I’m afraid of how I’m going to respond. Your prayers are very much desired.

Our Most Recent Sonogram

2007-09-13T13:29:00.000-05:00

Thank you to all who are sending gifts, cards, and offering up prayers on our behalf. God is sustaining us through it all and teaching me a lot about suffering. As Christians, we're all called to suffer, and however tall the order might be, it pales in comparison to what Christ's suffered. This whole thing keeps pointing me straight to the cross, reminding me of the blood shed for my transgressions, and knowing that Christ has experienced of the suffering I'm going through, but even more so.

We had a sonogram on Monday, and I was nervous, to say the least, going into it. It's very common for babies with T18 to stop growing around the 4th-5th month, so I was worried about what we might see. To all of our surprise, Jonathan's growth is topping the charts of a healthy baby in a normal pregnancy! It's estimated that he weighs 2lbs. 9oz. We even saw him open his hands a couple of times, which isn't common since most T18 babies' hands stay clenched in fists. We've had a lot of peace since Monday, just to know he's still growing. It makes it more believable that we might have a live birth and get to spend some time with him. I now have a goal for delivery of making it to 38 weeks. Since Deanna and Avery were both early, I decided that if I make it to 38 weeks with Jonathan, that would be very good! We'll pray to that end.

2007-09-02T04:57:00.000-05:00

This is just an update to let you all know that we're doing well. Jonathan has been more active than ever, which brings me such joy. Jared got to feel several strong kicks the other night, which was so special, since he hasn't been able to feel him too much until now. The dreaded hydramnios (which means too much amniotic fluid) has begun. My uterus is growing too quickly due to the abnormal accumulation of fluid, so I get very itchy and uncomfortable from time to time. It's nothing I can't deal with for now, although I do think about the next 3 months and it worries me a little bit. In a normal pregnancy, the uterus will grow approximately 1cm per week. Just this week, mine grew 2.5 cm! Yikes, that's a bit fast. Fortunately, this comes in spurts, so I won't be continuing at that pace....hopefully. :)

All of us are in good spirits and the Lord is diligent to uphold us in his grace. We thank you for your comments, emails, and prayers. May you all see Christ's love poured out in your lives, as we are seeing in the midst of our suffering.

2007-08-24T04:25:00.000-05:00

The last couple weeks have been difficult, as far as knowing how to feel. In one aspect, life goes on, Deanna and Avery depend on us, and all is seemingly normal. On the other hand, the baby I'm carrying is expected to die, so where does that leave me for the time being? How should I feel? Am I callous because I don't cry every day? Do I feel guilty because I'm not grieving yet?

Recently, a friend reminded me that there is no particular way in which to feel. Whatever I feel, is alright. And, it's good that I'm not grieving yet! There is no loss to grieve, praise God! Jonathan is here with us, with me intimately, moving, growing, living. He's such a fighter, having already beat the odds of Trisomy 18. It is a good place to be. I don't feel numb anymore, I feel grateful and glad that he is still here.

The Lord is softening my heart and constantly showing me I can trust in him, regardless of the circumstances. During the last couple weeks, I've purposely neglected my bible and prayer time, because I was sick of feeling, emotionally spent. The Word and prayer are powerful and convicting, so it's no wonder I was running. I've been guilty of not trusting fully in Him, and shutting down was easier than facing the truth. These are days to remember and hold on to, and I can now that I'm out of the fog I was in.

Thank you, Lord, for turning my heart toward you, renewing my spirit, demonstrating again your steadfast love and unchangeable spirit. Your grace is truly sufficient.

Comfortably Numb

2007-08-18T02:45:00.000-05:00

I'm 25 weeks into this pregnancy now, and it's been about a month that we've known about Jonathan's condition. The newness and shock have worn off. We've been thinking about ways to remember him, tangible items we can have that will remind us of his time with us. We've been gathering keepsakes that we can later personalize with Jonathan's handprints/footprints, taking maternity photos so we can reminisce when he's gone, and saving any and all emails/notes received from family and friends. We've decided on a cemetery and funeral home for when it's time to put him in the ground. We're going through all the steps to prepare for his arrival and departure, and I'm completely numb.

It's not often that I cry anymore, and I'm not sure if that's good or bad. It's a comfortable place I'm in right now, and I'm content to stay here, although it doesn't seem to be a healthy place. Keeping up with two toddlers' daily routine is enough to distract me from the reality that is so hard to grasp. This pregnancy feels fine, as I can feel Jonathan moving, and nothing seems to be different. There are only moments when reality hits me, but that's not often. I feel like we're just waiting and there's nothing I can do. I'm tired of feeling anything at all....comfortably numb.

Update on Jonathan and Mommy

2007-08-03T20:43:00.000-05:00

Today, we saw our perinatologist in Ft. Worth for another sonogram. There haven't been any new developments, which is an answer to prayer! The cysts in Jonathan's neck look smaller and aren't expected to cause a problem...another reason for praise. His heart still looks normal, although we won't know for sure how strong it is until delivery.

The main concern now is polyhydraminos, which means too much amniotic fluid. Healthy babies swallow amniotic fluid, but Jonathan is not or cannot, so I'm already accumulating a lot of it. The doctor suspects that within the next month or so, it will become a significant accumulation. This means that I could become very uncomfortable, as my uterus can be stretched 3-4 times the amount it would be in a normal pregnancy. There is an option to drain the fluid, which would be similar to an amniocentesis, but the needle would need to stay inserted 30-60 minutes. We're going to try to avoid that. It will be a matter of how uncomfortable I get.

So, to add to our prayer requests:
1. My body would not accumulate too much amniotic fluid, and that I would be able to withstand any discomfort from the fluid that does accumulate.

2. Jonathan would be within the 10% of T18 babies that do not have heart defects.

We covet your prayers and are forever grateful for all of you!

Our Prayers

2007-07-30T08:15:00.000-05:00

We are blessed to have so many hopeful people praying for us. All of your prayers are precious! Many of you have asked exactly how to pray for our family, as far as what we need and to the extent of Jonathan’s condition.

The major things I’m asking God for are:
1. to have time with Jonathan. Many babies with T18 only live for moments, IF they make it through the birth. I’ve never had such an indescribable desire to hold my baby, because I always took it for granted.
2. We also need wisdom and guidance from the doctors as far as making decisions regarding Jonathan’s care once he is here…Lord willing. This would include praying for an uncomplicated natural birth, and having the presence of mind to make the best decisions for Jonathan once he’s “out”. :) Also, pray that Baby Jonathan would experience no suffering.
3. Obviously, we’re praying for His great comfort and glory through all of this, not only for us, but for our girls, and for our family. Please pray that this would be a testimony to others, that Christ might be seen through all of us.

Some have suggested that maybe the doctors have made a misdiagnosis, or relayed stories where babies are expected to be born with disabilities, but turn out fine. Let me assure all of you that there is no mistake about Jonathan’s diagnosis. I had an amniocentesis, which tested his DNA. The test is 99.99% accurate. Sure, it would be wonderful…a miracle, if the test was incorrect, but let’s be realistic. The miracle we could all be praying for, is that God would reveal himself to many people through this situation. That in itself encourages us tremendously.

Thank you for remembering us, praying as the Spirit leads you, as he is our Great Intercessor, presenting our prayers to the Father.

The Lord is My Comfort

2007-07-26T07:50:00.000-05:00

Life has been pretty normal around here, considering the news. It just doesn't seem real yet, because life goes on as usual. The girls and I have our daily routine, playing, chores, swimming, the gym. I know there's this huge loss coming, but I don't know what losing someone close feels like, so I can't even begin to prepare.

My friend from church reminds me that God's grace will be sufficient and that I'll be amazed by how He comforts me. I'm amazed at how "normal" I can carry on now, in the midst of such devastating circumstances. It's only because God is literally carrying me through all of this, which makes me think of that poem, "Footprints in the Sand"...how cliche. :)

There were a few nights/days this week when I experienced a great deal of anxiety. That was something new for me, and I pray it doesn't come back, as it was such a yucky feeling. The only thing that got me through it was going to the Psalms. Some verses that were a great help to me:

Psalm 40:11
As for you, O Lord, you will not restrain your mercy from me; your steadfast love and your faithfulness will ever preserve me!

Psalm 57:1-2
Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadows of your wings I will take refuge, till the storms of destruction pass by. I cry out to God Most High, to God who fulfills his purpose for me.

Psalm 127:2
It is in vain that you rise up early and go late to rest, eating the bread of anxious toil for he gives to his beloved sleep.

Psalm 59:9-10
O my strength, I will watch for you, for you, O God, are my fortress. My God in his steadfast love will meet me.

Psalm 77:13-14
Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples.

Missing out on sleep during the last couple weeks, has made me so thankful for it. I am especially thankful that I have slept straight through the last 3 nights in a row. He truly is a special comfort in our time of need.

Jonathan has been increasingly more active this week. Any mother gets excited to feel her baby move within her, no matter what diagnosis has been given him/her. What a gift to feel his movements, a constant reminder that he is still here with us. It is therapeutic, to say the least, knowing and feeling my body is nourishing him, producing life. What a wonderful mystery.

Psalm 139:13-15
For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.

And, it's largely due to the above verses that I'm not depressed and crushed as a result of Trisomy 18. God formed this baby perfectly, according to his will. The doctors say this genetic disorder was a "random act of nature", but it wasn't. God predestined Jonathan to have T18 from the beginning of time. And we are his blessed parents. Glory be to God.

Isaiah 25:1
Oh Lord, you are my God; I will exalt you, I will praise your name, for you have done wonderful things, plans formed of old, faithful and sure.

IRONY

2007-07-24T19:17:00.000-05:00

Even before I met my wife, I was determined to name my first son Jonathan after the 18th century New England theologian Jonathan Edwards.

For those who have not heard of him, I am going to make a shocking statement that you might sneer at, but he is arguably the greatest intellect in the history of America. Contact Yale University where he graduated from entering at the age of 13 years old or read his theological work of 17 volumes published by Yale University Press.

Moreover, Trisomy 18 called Edwards Syndrome discovered and named after John H. Edwards is found in 1 in 6000-8000 births.

I wonder what the odds are of a child named Jonathan Edwards before conception would be diagnosed with Trisomy 18/Edwards syndrome. What are the odds, and has this ever happened in the history of the world?

I don't believe in chance but everything that happens comes from the hand of God.

Isn't that something?

One in a Million

2007-07-23T20:22:00.000-05:00

Today I found two trisomy 18 cases that really intrigued me. One where a girl lived to be 17 and another to be 21.

This is probably one in a million cases.

Meet Elaine. She is 17 years old.
http://www.nightsol.net/cyclerun/pressrelease.html

Here is the other case at 21 years old.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=2596523&dopt=Abstract

Also, here is a really neat story of a girl in Hawaii named Kirsten. She is 6 years old with T18. She made it through congestive heart failure, pnemonia, sleep apnea, and a paralyzing stroke at 7 months.
http://starbulletin.com/96/03/25/news/story2.html

What A Blessing

2007-07-21T20:54:00.001-05:00

Today, the mother of the precious little boy Eliot in the video, Ginny Mooney, was gracious to contact us. I don't know how she got our e-mail address, either through a friend or a support group, but it sure was a blessing.

How great is it that those who went through this tragedy or another tragedy of losing a baby continue to minister to one another. Praise the Lord for working through His people. There is truly treasure in these clay vessels (2 Cor 4).

Kristin,

My name is Ginny & a year ago today I gave birth to a sweet & amazing little boy named Eliot. He had trisomy 18. I hear that your Jonathan also has Trisomy 18. The past year of my life was the greatest because of Eliot, but also the most difficult. The joy & sorrow side by side is indescribable. Anyway, I just wanted to let you know that you are not alone & if there is anything that my husband & I can do, please let us know.

We will be praying for you & Jonathan.

Ginny Mooney

To see all about Eliot's story go to www.ninetynineballoons.com or you can see a little video we did about his life called "99 balloons" at www.ignitermedia.com

Words of Hope

2007-07-21T20:26:00.001-05:00

Below is an e-mail we received from a friend of the pastor of the church Kristin's parents attend called Hope Presbyterian Church. Hope is a PCA church in Shippensburg, PA.

This is a wonderful testimony of a Trisomy 18 case where the child is currently 9 years old!

I know this is probably a 0.05% case within Trisomy 18's, but we were 1 and 6000. Our doctor could not find anything else wrong with the baby except for the small cystic hygromas. I know those can get big, but they seemed like their size decreased from the previous sonogram. He also said our baby has a very strong heart which is rare with Trisomy 18 cases. Maybe he will live past his toddler years or into teenage years. There have been cases of children with T18 making it to teenage years, though very rare.

I just want to provide my child with the best care and see what miracles God will work through it, whether it is only a few hours, few months, or years.

May God be glorified.

Dear Chas and Kathy,

I just got the e-mail from David about your grandson Jonathan Edwards. David wrote that he has been diagnosed as Trisomy 18. I want you to know I have a nephew (Lesia's brother's son) who is Trisomy 18 and is currently 9 YEARS old. It has been a major challenge for the family with complicated nursing care and a lot of medical expenses, but my nephew is really a neat little guy.

Our family has seen, first hand, that Trisomy 18 does not have to be a death sentence. Part of the problem is the medical community does not want to treat the chronic problems -- we recall Lesia's brother and sister-in-law telling of times when they would take Mikey to the ER with resperatory problems and the doctors would ask why they wanted him treated! The doctors wanted him to die. His longevity is probably the result of his parents persevering in demanding proper care.

Mikey now interacts with us all and laughs and makes funny sounds. He knows who his parents and sisters are and you can tell that "the lights are on and someone is home." Yes, he is seriously delayed and probably will never come even close to any level of normalcy, but he is still God's child and a testimony of love.

If you want to talk more about all this I am sure my brother-in-law would be willing to talk to your daughter about all this -- maybe give her and her husband some advice on how to get through the difficulties with some sanity.

You are all in our prayers.

In Him,

David

Encouraging Words From Paul Washer

2007-07-21T14:33:00.000-05:00

Brother Jared,

I am very burdened for this great trial in your life, but I know that God is both sovereign and loving. He knows exactly what is necessary for you to be conformed to the image of His dear Son, and yet He DOES NOT look upon your unborn son as a mere instrument to change you. He looks upon your son as an object of His affection who will also stand on that great day and praise His Name. “For now we see in a mirror dimly, but then face to face; now I know in part, but then I will know fully just as I also have been fully known” - I Corinthians 13:12

Rachel wept for her children and refused to be comforted, but God told her to restrain from weeping because her children would return and there would be a hope for the future (Jeremiah 31:15-17). If your child does not make it to full term, there remains an unshakable hope for his future. Christ will lose nothing to sin and death but those who have willfully rejected Him.

Your brother,
Paul

Providence

2007-07-21T14:27:00.000-05:00

Dr. David McWilliams e-mailed us this week with the following comment:

"Hello Jared. This indeed is a hard providence. But, it is a providence. I hope that you both will find your comfort in your Redeemer's great attributes. Please take the time to read q/a 27, 28 Lord's Day 10 of the Heidelberg Catechism. Maybe type it out and print it so that you can read it often. And surely it would help Kristin at the time. The Lord bless you and keep you. David"

I have inserted Heidelburg Catechism questions here for our daily encouragement.

Question 27. What dost thou mean by the providence of God?

Answer: The almighty and everywhere present power of God; whereby, as it were by his hand, he upholds and governs heaven, earth, and all creatures; so that herbs and grass, rain and drought, fruitful and barren years, meat and drink, health and sickness, riches and poverty, yea, and all things come, not by chance, but by his fatherly hand.

Question 28. What advantage is it to us to know that God has created, and by his providence does still uphold all things?

Answer: That we may be patient in adversity; thankful in prosperity; and that in all things, which may hereafter befall us, we place our firm trust in our faithful God and Father, that nothing shall separate us from his love; since all creatures are so in his hand, that without his will they cannot so much as move.

Week 1

2007-07-21T14:17:00.000-05:00

Thank you everyone for your encouraging words. One of the biggest blessings of the week came from a video a friend sent us. It was such a testimony and a display of the glory of God in the midst of a trisomy 18 tragedy. I recommend you watch this video. We have had so much support from our family, church, and friends. Thank you so much and we will keep you updated.

For Video Click On the Red Link Below
http://www.ignitermedia.com/products/iv/singles/570/99-Balloons

First Announcement From Jared

2007-07-17T14:38:00.000-05:00

Many of you do not know, but we found out Monday night that our unborn son Jonathan Edwards has been diagnosed with Trisomy 18, otherwise known as, ironically, Edwards syndrome. You can "google" it, but basically it is a genetic disorder that is fatal. Most do not make it full term, and most of those die within a year. This has been a hard couple of days, but the Lord has given us peace in the midst of grief. We covet your prayers. You can specifically pray for peace, wisdom when making medical decisions, a healthy pregnancy, and a chance to be with our baby boy before he departs to be with the Lord.

First Announcement From Kristin

2007-07-17T14:36:00.000-05:00

Last night at 7pm, we got the results of the amniocentesis that was done two Fridays ago. As expected, our baby boy has Trisomy 18, (an error in the DNA) which is a lethal condition.It's a hard thing to attempt to prepare for your baby's death. All I know is that God is sovereign and purposeful. He will be glorified. Blessed be the name of the Lord. He is faithful, showing steadfastlove to his covenant people. Jonathan is a covenant child and we can be certain that he will be home with the Lord. He won't have to experience the suffering of this fallen world as we do. Still, it doesn't make the grief any easier. He was kicking so much this morning at 4am, that I couldn't go back to sleep. His heart is so strong, and he's growing according to the charts....so far. Only 50%of these babies make it to 9 months, and I just have a feeling that he's going to be one of those. I just want to hold him and know him for a little while. God has shown us grace in this by being able to know now, and have 4 months to prepare. A part of me just has to wonder what in the world He is doing through this, but I know I will never know the full extent of his glorious plan. Even so, Jonathan is a miracle, and I'm trying to be grateful for every minute he's in my womb, I don't even deserve that much. We desire your prayers to accept this, grow through this, and to rest in God's comfort. And we know that for those who love God all things work together for good for those who are called according to his purpose. Romans 8:28

Waiting Game

2007-07-09T22:44:00.000-05:00

Waiting is so hard, b/c I have all these emotions, but don't know which ones to have. The best case is that Jonathan's chromosomes are normal, but we still have the cysts to deal with. They could cause breathing problems if they enlarge, or could just be cosmetic if they stay the same. But, if his chromosomes are abnormal, we'll lose him and we don't know when. It's hard to stay in a sort of limbo for an entire week or more. I'm constantly reminded of God's sovereignty in all of this, and even though we don't know, He knows. He has already taken care of everything, no matter what the outcome.

Amnio Went Well

2007-07-07T08:09:00.000-05:00

Jared and I wanted to inform you all that the amniocentesis went very smoothly. I could feel the Lord's hand on me, as I was able to keep calm, and the baby was very cooperative during the test. We will have the results in 7-10 days, and we will keep you updated. Thank you all for your concern, your calls, emails, and especially your prayers. We feel very supported and loved.

Prayer Request Amniocentesis

2007-07-04T11:13:00.000-05:00

Dear Brothers and Sisters,

Jared and I have been told by our doctor, that our baby boy might have a genetic disorder that is fatal (Trisomy 18). We have scheduled anamniocentesis for this Friday at 11:30am. Until we know more, we aren't sharing this information with everyone, but we desire your prayers for peace and ultimately, a negative test result. Please support us through your prayers during this difficult and anxious time.