Wednesday, January 27, 2010
Had Matthew lived, he would have had some serious issues.
I have not really had the courage or the strength to really broach *just* what happened to Matthew and what was said about him and what was done. I have not had the courage to research vasa previa more. I have not had the courage to even try and understand any of it any more because frankly--it doesn't change anything and it just makes my heart hurt.
So, after listening on Sunday, that night, we did our Hanging on to Hope devotional. This was week 8 and Nancy (Guthrie--if you have a hurt heart, she's been there and writes about it beautifully--this book has spoken to us so much in 8 weeks) focused on --wait for it -- DEATH.
Yep, after hearing that death is a deliverance and healing from the horrors of this world, that night we read about something that tied right in with that.
After, I asked John some questions I haven't been brave enough to ask. I asked him if Matthew really lost a lot of blood. (Yes.) I asked him if Matthew was without oxygen for a significant amount of time. (Yes.) I asked him if Matthew would have had serious, serious issues had he lived. (Yes.) I asked him if the doctors had told him that if he survived, Matthew would not have had an easy life. (Yes.) I asked him if he really and truly believed that knowing all of this, did he feel Matthew was better off in Heaven. (Yes.)
Oh friends....please, please, please do not think that John thinking that means that he was not prepared to go to the ends of the earth to ensure that Matthew's life would have been the best life it could have been if he survived. He WAS! I WAS! He told me the NICU doctor from Georgetown had told him Matthew was very sick and was facing some serious issues and he meditated on that the whole drive up there. In his head, he thought about what that meant and how we would deal with it. And deal with it we WOULD!
But...would Matthew ever say my name? Maybe not. Would he ever even walk? Maybe not. Would he have been able to eat or would he have needed tubal feedings? Who knows? Would his life had been the life it would have been 10 minutes before he was born and the vessel hadn't broken? No. Not anywhere near it.
We see little boys and girls with disabilities all over the place and look at each other and say, "We'd take that in A HEARTBEAT."
And we would.
But, in continuing to think of the many, many, many prayers offered for my precious little boy--prayers for him to be ok--I have to really be honest and ask if I think those prayers were answered and he's ok.
I'm not sure I can answer that right now. In my heart, as a mother, I absolutely would not want my son to suffer even one second. In my heart, as a mother, the thought of my son being cradled by Jesus Himself is what I'd want.
But in my heart, as a mother, with unknown possibilities swirling around what could have been, I still ache for him to be right here with me.
Sunday, January 24, 2010
So, I'm going to be very transparent here. I have been mulling over the purpose of prayer for several weeks. A dear friend and I talked about it and she had such a good statement: Without communication, there is no relationship. So, at the very least, prayer is necessary for a relationship with God.
I also know the Bible tells us to pray. Jesus prayed. He told us HOW to pray. So, obviously, we are to pray.
BUT...here's my struggle. What is it that I am to pray for? If I believe as I claim, that there is a plan for each and every life and God knows it from the beginning to end, what is my prayer for? Is it going to change the way something happens? How could it, if the 'plan' is the 'plan' regardless of my prayer for something different. Moreover, if we are asking God to intercede and heal people, on what basis are we asking that? And even more pressing, on what basis does He decide to do that? Why does He pick one baby to save and not mine? Were our prayers not good enough? Had we prayed harder, or more people had prayed, would that have changed anything? I can't believe that it would--because if it did, that means that enough fervent prayer could have saved Matthew and that just doesn't sit right with me. Especially in light of the fact that I know people around the world were praying.
So...when we ask people to pray and heal someone--if it happens, we claim miracle. If it doesn't, we claim what? God said, "No," to that prayer? Maybe...but then that makes one start asking questions that I have thus far not: "Why NOT?" "Why NO to my son?" And again, I go back to my belief that God is not up in Heaven plucking babies for a plan. Nor do I believe He needed another angel--He's GOD for Pete's sake! He needs NOTHING from us. Nor do I think He created Matthew, saw what a beautiful little boy he was and said, "Hmm...should have kept that one. Taking him back."
As I said, I am clearly, CLEARLY struggling with prayer. I have been hard-pressed to offer any to God out loud. I'm relying on the prayers John offers for our food and our days. I'm relying on the prayers of our many friends and family. I'm relying on the Holy Spirit to offer my prayers for me because I am just having a hard time doing it myself.
But today...the service today did not really give me the "Aha! THAT's what I was looking for!" with reference to my understanding the purposes of prayer and what we are to petition God for, but it DID bring to light something else. Though I sat and cried and cried as he spoke, I know what he said was for me.
We have been discussing the various names of God. Two weeks ago, we discussed God as I AM--our All and All. Last week, he preached on Jehovah-Jireh--God as our Provider.
Today was Jehovah-Rophe--God as our Healer. I knew it would be hard to sit through, as things are still so raw. My pastor talked about how God takes away our bitterness as our Healer. He used the story of Moses taking Israel out of Egypt--they got through the Red Sea only to find the water on the other side was bitter. He delivered them...and made the bitter water sweet. Then, as many Southern Baptist preachers do (and possibly one reason I love being a Baptist because the sermons are so nice and grammatically geometric!), he made his second alliterative point:
God heals through deliverance...My pastor said something like this: "We ask if God still heals? Does He still heal? How can we say he does when we pray and people aren't healed? Is He still healing? Yes, He is.
He heals: 1) through doctors;
He heals: 2) through deliverance of circumstance
He heals: 3) and this one is the one no one wants to hear or talk about, but is nonetheless precious healing, He heals through death."
That's right. He delivers us from the horrors of this world through death.
Now, trust me...sitting there this morning, listening to that, I thought, "DEATH is better than my arms??? DEATH is better than Matthew's mother???"
And if I am really true, and believe what I say, it is.
In death, Matthew is whole. He is not hurting. He does not cry. He is literally at the feet of Jesus. And though it may not be better to us, it is certainly better in God's eyes.
My pastor is right. No one, including me, feels comfortable saying that death better than life on this earth.--But like I said, if we REALLY believe what we claim, then as uncomfortable as we are, it's truth nonetheless--what can be better than the feet of Jesus?
SO--the point of this all is that in my struggle for the purpose of my prayer to God...my heartfelt and deepest prayer to God that my little boy would be ok...my prayer was answered and it wasn't "No." It was death. Death on this earth. The loss of him in my arms. The ache I will feel for the rest of my natural life.
It's my arrogance and desperation as a human and a mother that tries to cloud Heaven being better than my arms. It's my rebellion in wanting what I WANT. And yes, I know it's because I am human that I am this way and I feel that I am totally justified in the feelings. Well, maybe not justified in the truest sense, but certainly justified as a human feeling them.
My beliefs are being challenged on a constant basis. Hourly I make decisions to trust what I know has to be true. This morning was hard, and did challenge my beliefs...but in my pastor being honest and approaching something that we as humans who love life don't want to hear--he helped answer a question that has been raging in my mind for days and days.
That rare, tiny piece of clarity seems to be so far from me so much of the time. I am grateful for it today.
For the record: I HAVE learned that in prayer, I need to be far, far more specific.
Saturday, January 23, 2010
Sixteen minutes from now would be Matthew's two-month birthday. It feels like it was just hours ago.
I have so many, many things going on in my head...as always. I admit that even though yesterday was such a roller coaster day, overall, I ended it being hopeful.
Today, I got up, got out...saw some of my sweet children of years past (and always in my heart) and ran errands. I found myself thinking, "Maybe I am turning a corner."
Then I found myself feeling TREMENDOUS guilt and apprehension about even making that statement. I remember Dr. Polko telling me a few days after Matthew died that I *would* laugh and feel happy again and it was OK. I shouldn't beat myself up for it and it was nothing I should feel guilty about.
When she said that, I remember thinking, "Of course I won't feel guilty. Of course we are not meant to be miserable every day of our lives. Me smiling or laughing doesn't mean I love or miss Matthew any less."
Easy to say when I didn't feel even close to smiling or laughing. In fact, during the days after Matthew died and after his funeral, I was SO, SO, SO grateful for the dear family we had around us because we LAUGHED! We told stories, we remembered the funny things about our family, and we LAUGHED. I didn't feel the least bit guilty then because we *needed* to have levity and laughter in such a horrible and dark time. I know had we not, we may well have just fallen into a deep hole and not come out.
I think, also, I felt more permission to laugh--people were PURPOSELY trying to cheer me up because they were so worried about me and I, ever the eager-beaver-people-pleaser wanted to oblige to make them feel better too.
Now, though...two months later, I can't believe that I actually *do* feel guilty. Though I know two months have passed, as I said, it still feels like hours ago to me. The pain still feels that raw. And yet, yesterday after the doctor appointment, I found myself almost a little bouncy. Of course, that bounce was stopped dead in its tracks when we got to the cemetery, but...there was bounce before. The guilt in that comes from how easily I bounced at the prospect of being pregnant again. Though I KNOW that joy has nothing to do with my missing Matthew, today, it seems almost disrespectful. How can I be so desperately pained and bouncy at the same time?Here is where I can see the validity in Dr. Polko telling me NOT to be guilty about being happy again. Well--having happy moments, I guess is more what I have been experiencing. She was right though. I would and I do.
How in THE WORLD can I even contemplate happy when I don't have my son with me? How does one even reconcile that concept? Here's where the enemy gets you--"You can't love him *that* much if you are already able to laugh." "So what? He's so disposable that another possible pregnancy fixes it?" "Told you...after a bit it will feel like he was never here at all..." And it goes on...
So, I wrestle with that.
Ever since Matthew died, I have been sleeping even more poorly than before. Duh. However, I've found that when I wake up through the night, as I constantly do, things pop in and stick in my head, over and over, and over and over. At first, the song for his slide show, Visitor From Heaven by Twila Paris was what I would hear every time I woke up, or even had a blank thought in the shower or car or anywhere else. Once that faded, When We All Get To Heaven was the constant repetitive song. It is Well With My Soul lasted several days and Above All was another one. It's not just songs, either. When John and I went to Philadelphia two weeks ago, throughout the night, every time I woke up as I tossed, I heard in my head, "PRAY!" "PRAY!" "PRAY!" It was strong and it was fervent, over and over.
Last night was another night where I had the same, constant and repetitive words going through my head. Great is Thy Faithfulness...over and over, Great is Thy faithfulness...morning by morning, new mercies I see. All I have needed, Thy Hand has provided...Great is Thy faithfulness, Lord, unto me...
And so they have continued throughout the day.
The worst thing (and every day, I find a new one) I am now encountering is that as the time passes, my feelings of connection to Matthew sort of change. They don't disappear, but change. Even though he would be two months old today, in my head, he is still my wiggle-worm, in utero monkey. He's still that precious, soft-skinned little angel I stroked in his isolette, the little angel I hardly got to see or touch. I don't really have a concept of him at two months, and that breaks my heart. And as time goes on, I fear this won't get any better. It hurts too much to imagine what he would be like at certain stages, yet...to keep him as I remember him seems so small to me. I don't know how to describe it.
I know. I'm rambling. I warned of that at the beginning.
How I'd love to know how my life with Matthew would be different if he'd survived. I know how it is now...and it brings me such heartache.
Oh, how I love my precious baby boy.
Friday, January 22, 2010
As we drove to our 'follow-up' (How exactly *is* a follow-up appointment supposed to go when the discussion is about your beautiful but dead baby son and how to get a baby brother or sister for him????? You've got me...) appointment at Shady Grove with Dr. Kipersztock, I made my FB status, "Lori Ennis is biting my nails (not really...yuck) all the way to Annapolis. The above verse was a welcome and comforting comment.
Especially in light of the fact that I walked in there with my HUGE binder, full of pre-printed calendars, insurance forms, former IVF protocol info and talking points. I am, if nothing else, a Girl Scout at heart and always prepared. (Or is that Boy Scouts? Perhaps not so entrenched in Girl Scout doctrine as I thought?)
In addition to all of that (and more), I had about 3 trillion and nine different scenarios and 'game plans' that I figured we would discuss and choose one to enact. Oh...when will I learn to STOP planning 18 different possible situations and just wait and see what is laid out before me???
Dr. Kipersztock was wonderful. So compassionate. So cognizant of the valuable and beautiful little life Matthew was. So visibly choked up when he saw pictures of my precious son. Simply wonderful. After telling me again how very rare vasa previa was, and how shocked and saddened everyone was, he suggested our next steps. I waited with bated breath--which one of my carefully thought out, dated and anticipated plans would he choose?
None. In fact, he threw me a loop. He suggested, rather, highly recommended that we transfer the frozen embryo we had from Matthew's batch. That's right--transfer Matthew's twin. Of course, with a frozen transfer, specifically one using only one embryo, the pregnancy rate is not as high as a fresh cycle. HOWEVER, the embryo is a beautiful (of course it is--I think it has been well established that John and I make gorgeous babies), very high grade embryo. In fact, after Matthew was transferred, his little embryo twin (Sam-I-Am, for Cindy!) grew a few days more before being frozen and therefore is actually a stronger embryo now than Matthew was when transferred.
Dr. K said it would be faster--we're talking a transfer in the middle of February. He said it would be easier--some of the shots not so much, but the frequency will be less and the trips to Annapolis at the crack of dawn every day for monitoring won't be required, not to mention it's (theoretically) less stress on me emotionally. He said it is a younger, super looking embryo than I may have now, a year later. But most importantly, it's Matthew's twin. What a special, special bond that little embryo has with my Matthew. I have to admit, as I sat there crying, my heart leaped just a little bit. No child of mine will ever replace my first born. How could he or she? Not any more than Matthew could replace him or her....yet, there's something so precious to me to know that the little embryo waiting for us shared the same intimacy with Matthew as God formed them.
SO...that's what we are doing. We did some work-ups today and thankfully, my body seems to be working in full-form and is doing all the girl stuff it should. (As I have become aware of a little larger readership these days, I shall be a tad bit less descriptive than I may have been in the past when I thought only 4 people may be reading it!) In the next few days, I will start the initial medicine and get ready for a transfer somewhere right around the time John has to go to Minnesota for two weeks (isn't it ALWAYS that way?). Then, we should know whether it's a successful pregnancy by the end of February or so. I am so hopeful...yet cautiously realistic as well. Dr. K acknowledged that my next pregnancy--whenever it happens--will be a LONG one and I will worry every day. (Ya think?) But friends, worry or not, as I was from the second I heard, "You're pregnant!" with Matthew--I will be thankful to God and know that all is in His hands.
In other news:
Blue Cross/Blue Shield STINKS! I specifically am keeping this insurance since we live in Maryland and Maryland mandates infertility coverage. Knowing we have possible fresh cycles ahead of us (though I hope not!), I was glad that at least this time, the medicines (a HEFTY fee) would be covered. Well, guess what? They WOULD be...if I was enrolled in their IVF program. As my IVF procedures are being covered under the shared risk program we have with Shady Grove (and for which a TON of money was plunked down), BC/BS doesn't cover the medicines for those cycles. WHAT????? If I was claiming the IVF procedures through BC/BS, they WOULD cover the medicines--but since I am saving them A TON of money by not having to pay for the procedures since we've already paid for them--they repay the favor by not covering the medicine. INSANE. So...basically, if this frozen cycle is not successful and we have to do a fresh cycle in March, we'll probably suspend the shared risk part, and use our insurance benefits instead. This will cost BC/BS about $15K...but it will save us potentially $7500. Since they are being unreasonable, I find this a fair trade.
And the cemetery....there is absolutely nothing I can say about picking the marker that will forever tell the world what you want them to know about your precious son. It's a horrible, gut-wrenching thing to have to do, and I pray to GOD I never, ever, EVER have to do it again. It was almost surreal. His marker will have our special verse: 1 Samuel 1:27 "For this child I have prayed" and underneath his name will be "Gift of God". It will also have a helicopter with little clouds, as his daddy found it fitting that he got flight time in his short little life.
Friends--every day I say, "Surely...surely THIS will be the hardest thing we do in this whole process. Surely nothing is worse than...."
Every day, I am amazed at how very, very wrong I am. My heart just breaks a teeny bit more every day.
And last...I think I *may* write a book. I'm mulling it over. I have something I want to write about and I even have a title. I just have to think about how to go about it. I'd say I was planning it...but then again...we all know how my planning process goes.
Wednesday, January 20, 2010
We have an appointment on Friday to pick his marker out. Funny...I figured I'd be at the pediatrician's for his 2 month shots.
Tuesday, January 19, 2010
Perhaps that definition is why I have been having such a tough few days. Or week and few days. Heck, let's be honest, 7 weeks and 3 days.
- Who I thought I'd be was a tired but jubilant new mother.
- Who I thought I'd be was a woman who falls in love with her husband more and more every day as I watch him continue to be so darned cute as a new daddy.
- Who I thought I'd be was a woman finally able to have the conversations about pregnancy, labor and delivery with other moms at play dates, while we watched our little miracles coo and grow.
- Who I thought I'd be was a woman who finally, finally was able to claim there was nothing more in the world I could ask for: A wonderful husband, beautiful baby, amazing family and friends and lovely creature comforts.
I could go on and on with the various ways I thought I could describe myself.
I am tired...but because I do not sleep and grieving is exhausting.
I am a mother...but jubilant would be the last word I'd use.
I do fall in love with John more and more every day...because I am amazed at his strength and in awe of the depths of love he had for my son. Yes, I know Matthew is John's son too, but knowing how much my husband loved our little boy...and how broken-hearted he is that Matthew died...truly, I cannot imagine my life without John.
I can have those conversations with other mothers...but not at play dates and not without making the other mothers somewhat uncomfortable because we all know how tragically my story ends...and seriously, what does one say? We all know there are NO words for this. None.
And while I still have a wonderful husband, amazing family and friends, lovely creature comforts and had a BEAUTIFUL baby, oh....there's SO much I would ask for...namely my beautiful little Matthew--living, breathing and growing as I have the honor of raising him.
So, essentially....I am a mother without my baby. Try learning how to be that. It's not easy, I promise. It's heart-wrenching and makes you feel as if you have been slammed against a brick wall--over and over--and can't catch your breath. It's constantly reliving the events that led to the delivery...remembering that even right up to the VERY second John called and told me Matthew was going to die, I was JOKING. I was my typical self--crack a joke and try to be a good patient so no one is put out....because I KNEW Matthew was going to be ok.
It's reading blog after blog after blog about the heartache of so many mothers who also have had their babies die--and realizing that the flip side of knowing I am not alone is that the tragedy of losing your baby is SO much more common than we realize.
It's questioning every single thing you've so EASILY believed in because up until now, those beliefs have never TRULY been challenged...and now that I am challenged to BELIEVE what I say, it's not as easy some may think.
It's wondering what in the world I do now. What is a mother without her baby?
That's who I am. A mother without her baby.
Sunday, January 17, 2010
Most of the time, they are probably right. I then say, "No, no...it's fine, I'm just having a hard day."
Good night! EVERY day is a hard day. EVERY minute is a hard minute. Not a second of my day goes by without me somehow being consumed with Matthew--He's not here. He was here. Where is he? How is he? When will I see him? What will he be like? What would he have been like? How is this my life?????????
Making tea, I ask those questions. Sitting at my computer reading others' stories or researching information, I ask those questions. In the shower, I ask those questions. In the car, I ask those questions. Watching television, I ask those questions. Standing in Lowe's, I ask those questions. Sitting in church, I ask those questions. My every thought somehow, someway always revolves around Matthew. So, every day is hard.
This was a tough week, though, and I'm not sure why. By tough, I mean even MORE difficult than the weeks before. Maybe it's reality settling in? It's definitely a lot of anxiety about what I am to do and where I am to go from here. Maybe it's the fact that it has already been over 7 weeks for everyone, but to me, it seems like it was a few hours ago. Literally. Maybe it's the realization that it's been 7 weeks and it STILL hurts like it was a few hours ago. Maybe it's the fear that it will hurt like this for a lot longer still...shopping didn't help, nor did going back for my post-partum checkup. Maybe it's all of that. Probably so.
Someone said something to me this morning--she said, "There's something out there for you." This was in reference to the fact that I told her I just sort of felt aimless...I was saying purposeless, but that's not true. I have a purpose--I am a wife, a daughter and a friend. I am a grieving mother. I am a sister and an aunt. There's purpose in all of those roles, though I admit some are far more definitive than others.
But I am aimless. I don't know what I want to do or where I want to go. I know what I don't have, and I know I am heartbroken. Heartbreak hurts, and frankly, I hate hurting. I want a definitive aim. I want the anxiety gone. I want a focus. I want all of that and yet, I still want Matthew with me every second in my thoughts. I guess the bottom line is that Matthew was my focus and aim and now...well, now what?
Growing and moving on to me means I accept that what I spent the last 10 years planning for, and the last year growing and loving no longer is a valid option and that just overwhelms me. It means I accept Matthew is gone and while I knew my life was going to change the minute he was born, it has abruptly turned into a change with which I have no idea how to deal.
I just don't know....
Yes, it's been a very tough week.
Friday, January 15, 2010
I wanted to have this day come because if I get my OB's clearance, then that goes to Shady Grove next week for my appointment with Dr. Kipersztock.
I dreaded this day coming because I knew it meant I'd be in the same place that had so many memories--memories that now choke me up.
When I got there, as always, the staff was wonderful. They asked if I wanted to just go straight back to a room because Dr. Polko was running behind. They were considerate of how sitting in the waiting room may be. I decided to tough it out--after all, it's Matthew I miss, and he wasn't there. I DID miss seeing Matthew's picture on the boards, and teared up a bit over that, but went back to my cool new super phone and really didn't even realize an hour had passed. Thank God.
In the exam room, I pulled my hankie out, just hearing Dr. Polko's voice in the room next door. I looked in the magazine rack and saw a couple of magazines. And that's when I lost it...because there was also a child's Dr. Seuss book...yep, it was One Fish, Two Fish, Red Fish, Blue Fish.
My little Red Fish...I cried for him. Cried and cried and cried. I don't think I even cried for me, but for him...who he would have grown to be and what his life would have been like. I called Mom, and she cried too. What I wouldn't give to have my little Red Fish with me...
Dr. Polko was, as per expected, amazing. She cried with me, smiled for me and most importantly, loved on my picture of Matthew. I showed her how big his feet were and we laughed. I told her not seeing Matthew on the board broke my heart. Of course, I didn't think that they put pictures of babies who only lived a few hours up there. IMMEDIATELY, she said, "Honey, just give me a picture....he's one of our babies." Let me tell you how compassion truly makes the world a better place. I gave her my favorite picture of him, the one at the top of this blog where he looks like a perfect angel. She honestly made my day.
The exam was fine. She doesn't think the residual upper-abdomen pain is anything but abdominal muscles still strained and told me to still just be easy if need be when it hurt. Everything else was great, and I was given the clearance for all prior activities--Dyson, here I come! I told her we were going back to Shady Grove next week and would try for a brother or sister. She hugged me again and told me that she saw no reason for that not happening.
Then, she did something that made my heart swell and break at the same time. She gave me Matthew's baby spoon--a little silver spoon given to the moms who deliver there. Again, she said, "He's one of our babies," and we both cried.
Nothing takes the heartache away, but don't doubt friends that compassion surely helps soften it. I am very blessed with so much compassion from so many people.
Wednesday, January 13, 2010
That's what every day seems to be. A new version of the same hell I am in.
As if life is not awful right now...I have ONE pair of jeans that fits me. One. And wouldn't you know it? It's early maternity. Talk about rubbing salt in the wound. So the pair of jeans gets worn and washed, day in and day out.
When I went to Philadelphia with John yesterday for his business trip, I put my best foot forward and went looking for clothes.
I gained 47 pounds when I was pregnant. I only started at 97. Before you keep reading, please don't grumble about how I was teeny tiny in the first place and the size I am now still is amazing. I realize I was small before. I realize I have always been blessed with my size. I KNOW this and have always been grateful for it. But gaining half my body weight was a MAJOR deal for me. Major.
I've lost nearly 30 pounds already--and I really couldn't care less about how much left I have. I'd be fine if I stayed this weight the rest of my life. It's not the weight--it's the redistribution. And that is NOT something I can change--hips and ribs spread during pregnancy, and they change the body shape.
So when looking for clothes, I really didn't mind so much that I went from a 0 to a 6 (YES--I KNOW A SIX IS STILL SMALL....but think about the CHANGE for me)....after all, I just had a baby.
I just figured that when looking for things to fit the 'new' me, I'd have the baby with me. It would be worth it and I wouldn't care.
Nope. Empty dressing room and the only one crying was me.
When John and I went to grab lunch, there were babies/toddlers everywhere. Everywhere. And again, as I said, these are obviously not Matthew...but today, they were reminders that I didn't have my baby with me. I sat down with John to eat and thought I was going to throw up because I was so sickened. I couldn't swallow for the lump in my throat.
And my favorite? As if trying to find something to wear wasn't enough struggle, walking by Carter's and Gymboree and The Children's Place and Janie and Jack was torture. Just torture.
I SHOULD BE IN THOSE STORES.
I SHOULD HAVE MY SON WITH ME.
THIS SHOULD NOT BE MY LIFE.
And it's not. Instead, it's my own version of hell. Every day, though, it seems I find a new dimension to the same hell I've been in for the last 6 weeks.
That's all. It's just hell.
Monday, January 11, 2010
Walking With You is an outreach of Sufficient Grace Ministries. We are a group of mothers who have lost a baby or child, who gather together each month to share our stories, to encourage, and pray for one another as we walk this path together. Our hope is that you will be comforted when you join us here...and maybe that we can offer some grace for the journey as we look to the Lord for comfort and strength.
Today, came across the blog above...my heart just breaks at the many, many, MANY devastated mommies and daddies across this world missing their precious babies. I'm literally overwhelmed at how many blogs for these babies exist. It's just horrible...and really beautiful at the same time. This one, from the Sufficient Grace Ministries, had a really nice post today. A hard post--one that acknowledged that most days, getting out of bed and brushing one's teeth seems to be a major accomplishment when deep in the midst of grieving one's baby. (AMEN!) It challenged readers to give God praise, even in the middle of the this heartache.
My promise was to do just that...I was so grateful to God for Matthew, I couldn't EVER imagine a time I would be able to do nothing but praise Him for the miracle He gave me in Matthew. As I've said before, I never in a million years dreamed I'd be called to prove that.
Yet so many dear friends make it so easy for me! John and I have been wrapped in love and prayers from the second Matthew (Red Fish, I'm convinced!) WAS! His death has brought more people and love and prayers to us than I can believe. We are truly blessed with so much love and God's work in action. THAT is worth praising!
I had a doctor appointment today for some other complications--nothing major, hopefully, and more just the fun that comes with having an emergency c-section. BUT...the skill and expertise shown by the doctors and nurses and staff who worked on me from the day we went to the hospital to the day we left is truly worth praising. Because of them, I'm alive! I've healed pretty well and I was treated with such heartfelt compassion, I'm still in awe of it. THAT is worth praising!
John and I have been able to grieve together. We do our own separate thing, but we come together as needed and are forever bonded and deep in our love for each other and our little boy. THAT is worth praising.
We are hopeful for a sibling for Matthew. I doubt the road is going to be easy, but it is still worth taking. THAT is worth praising!
I received two different things that touched my heart today from two dear friends. The first, familiar Bible verses:
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls"
The neat thing about these verses? They are Matthew 11:28 and 29....My Matthew was born on 11/28 and died on 11/29. How very, very appropriate.
The next came with the attached message: "Jesus told me to send this to you."
Really, how great is our God? I am hurting and broken...yet He still sends me in so many different ways His compassion and His love.
Sunday, January 10, 2010
The thing is--as much as I admit I am wistful when I see happy families and expectant moms just glowing with all the promise of pregnancy--I am GLAD for you!!! Pregnancy was wonderful--even with all the aches and pains of it. I want you to enjoy every second of it!
Most importantly, know this...I am hurting because I miss Matthew. I am broken-hearted because I miss Matthew. And your baby, or any other child I may have is not Matthew. I know if Matthew had survived, I wouldn't blink an eye when I see you with your baby bump. I may think, "I remember that, but BOY am I glad it's over!" I'd probably put cute little "What does sleep feel like?" remarks as my Facebook statuses, and I surely would laugh and joke about how I was glad I was able to wear normal clothes again....and that's EXACTLY what mommies-to-be and new mommies SHOULD be talking about.
We should NOT be talking about the heartache we feel when we realize, 6 weeks after, that our babies never heard the lullaby that is played on the Labor & Delivery floor when a new baby is born--I realized two nights ago that Matthew never got his song...all involved were far too concerned with saving his life. For some reason, it is just breaking my heart into pieces that my boy never got his song. I don't know why this hurts me so much right now, but it does...and should NOT be what I'm thinking or feeling.
Yet it is. And those are the cards I've been dealt and with which I am dealing. It's Matthew I'm missing and your pregnancy doesn't replace Matthew and neither will any future pregnancy I may be blessed to have. Your pregnancy and new baby are joyful things for which I am honored to know about--and I don't ever, ever, ever want you to think otherwise. I'm nothing but joyful and excited for you, for motherhood is the absolute BEST THING EVER--I promise!
Saturday, January 9, 2010
Thinking about those events now certainly doesn't make it FEEL like it's been 6 weeks. The pain still stings like it just happened. I dare say that there will be days for the rest of my life that I will be able to remember this intensity. I realize they won't be as frequent as they are now, but they will exist and I dread them.
One thing losing my mom did for me was enable me to understand what true and seemingly senseless loss felt like. Cancer is HORRIBLE...and does not discriminate. While I knew she had cancer, being told she had died was a shock because she had been treated and we thought we had a little more time. When my mom died, I realized pain and grief I really did not know could exist--and though I was so heartbroken when my grandmother died a few years before my mom died, losing my mother was really the worst thing that had ever happened to me.
And it took a long, long time to feel like I'd make it through. Still, nearly 7 years later, I wonder if I will.
Which is what scares me tremendously. I know what I went through with my mom dying and I know how long it still is taking to feel like I can be at a 'good' place with losing her.
Losing my son...my precious baby boy dying only a few hours after he was born...this is so, so, so much worse than anything I've ever imagined could be. The thought of how long my heart will hurt is just so daunting, and frankly, though I know God says in all things to rejoice--I'm not there yet. I'm able to rejoice in the support and love we have been given. I'm able to rejoice for all the people who tell me their lives have been touched. I'm able to rejoice in the fact I have yet to be angry with God, or really angry period. But rejoice even though I don't get to hold Matthew or cuddle him or even kiss him and see his face? I'm not there yet.
Which brings me to the letter. I've always sort of joked that I would just LOVE it if God would send me a letter and just tell me what to do...tell me what path I should take, tell me which road to go, etc. My rhetoric answer is usually, "He did...the Bible," but in honesty, sometimes I wish the Bible was more clear to me.
So, imagine my interest in the mail I got yesterday. It seemed, at first, like some fund-raising thing, but I was at least caught by what was written in the return address part: "Dear Jesus, we pray that you will bless someone in this home, spiritually, physically and financially. St. Matthew 18:19" Bless Someone In This Home was highlighted in yellow, so that caught my attention, as did seeing the name Matthew.
It's not often I get a letter asking for us to be blessed and using a verse from Matthew.
I opened it, fully expecting to find it to be looking for money, but still...I read...
- "God has laid your address on my heart. I just feel someone connected with this address needs prayer for God's help. Could this be you?...There is so much for you to enjoy in life when you look to Jesus Christ as your total Answer. God put you on this earth for a reason. He wants to bless you...Remember, God loves you. I want to help you and pray for you."
STILL no request for money, in fact, several times the letter said DO NOT SEND MONEY. This mailing said the sole purpose was to help with problems we may be facing through prayer, and gave a postage-paid postcard to mail this group specific prayer requests we had.
At this point, even John started to read with me, because it was just that startling to us. He asked who it was from and I looked...all I could find was it came from an organization called St. MATTHEWS Churches.
Then I came to the next insert...a closed letter asking reminding us to send our prayer request card so we could be prayed for. I opened this letter and looked at what it said. It was prefaced as being a prayer that had been prayed for us (I know, I know...how many "USes" are there out there that may have gotten this exact letter? Who knows, but it spoke to us.) and it read:
- Dear Lord Jesus, We pray over this word for this dear one that these words of faith bless someone at this address...Most of your battles will be fought inside the head. This is why your thoughts must be focused on God's new future for you. Think ahead, not behind. God said, "Remember Ye not the former things, neither consider the things of old. Behold, I will do a new thing. (Isaiah 43:1)
- It then went on to say this is what God wanted me to know: "My Precious child, how I love you. I created you to experience and share my love. Do not allow the things that are happening in you life to come between us. Rather, understand that it is these things happening that should draw us closer together. All that is happening has a purpose. It is part of the teaching I am sending to allow you to be better prepared for even more which will come in this world, and for that which is inevitable in the coming world. My child, in the wisdom of my guidance, you will find the way out of darkness into marvelous light; out of unrest to rest; our of disorder to order. I have steadfastly said, "Fear Nothing Look ever to me and I will be your strength."..."Walk with me and Know I am the Lord and your faith in me is your strength."......I say unto you that all things you have feared are under my control. Rejoice and be glad for I will bring you to the forefront in all these matters. Know that I am your guide in all things and no perils can affront you....Know that I watch over you, for I am the Lord who loves you beyond human understanding and many things shall I do." (Only put that in red to differentiate...I REALIZE it is not literally what God said...please don't email me about it.)
- The letter then goes on to say that those who have prayed over this also want me to know..."You have not allowed the holy spirit to have complete acquisition to the problem...this has made you too vulnerable, far more than you can see, and it is only through the holy spirit guidance that you will in any way come out victorious.....you are at a place where it is critical that you decide whether you will go with the Creator or let your faith go otherwise. God has big plans for you and Satan will do all that he can to destroy these plans. You are at a critical crossroad in your life and every decision is important....
I realize (for those of you who have even continued reading) that this is obviously a pre-printed letter and probably mailed to thousands upon thousands. As I said, though, it spoke to me. As if God Himself was speaking directly to the questions I have been asking and the thoughts I have been having. And that it came from St. MATTHEWS churches, a group I have never heard of, and when going to their website found no money-grubbing...just lots of different ways to tell people that God loves them and there was hope in Jesus....well, that sort of spoke to me as well.
Like I said, I always ask God to just write me a letter. Who of us is to say He didn't use this group to get His letter to me?
Thursday, January 7, 2010
I DID go in this morning, though. In the last few weeks it's been hard to face reminders. While every picture I have is priceless to me, they are all also so hurtful. To look at all the pictures just makes me ache to have him. It stings, physically. So, I've sort of tried to avoid them. Not totally, but enough to keep me from going insane with missing what I wish I had.
Same for the nursery. Matthew's room. Just typing that gives me such a lump in my throat and my eyes instantly fill with tears. I've pretty much avoided the nursery because it is just agony to go in there and know what should have been but never will be. I feel like my head will explode, it hurts so much. On one hand, I wish that I had the guts to just pay someone to go and remove every trace of anything in there because it just hurts so much. On the other, I can't bear the thought of any of Matthew's things being disturbed or gone because it's all I have left.
In thinking about this, though, and still sort of grappling with well-meaning people telling me they are excited about us going back to Shady Grove this year, I realize that the very thing I don't want--people forgetting that Matthew was born and lived, is our first son and can't ever be replaced--is the very thing I indirectly am doing when I avoid his pictures or his room. In not forcing myself to face those things because they hurt so much, I essentially am trying to forget Matthew. It's not Matthew, of course, but rather, the pain and grief that comes with missing Matthew. And yes, I desperately, desperately, DESPERATELY wish I didn't have to deal with that pain and grief.
But remember my new favorite word? Bittersweet? Well, here's another one of those situations. In saving my heart from having to face reminders of all the hope and joy of Matthew, I am robbing myself of all the hope and joy that was Matthew. I simply can't do that. To love him is to love him, period, and I'm just being sort of selfish when I avoid things that make my heart hurt. I've said this before and I mean it: If I knew that it would all turn out this way, I'd still, in a SECOND, do it again and again and again for the sheer bliss I've been privileged and honored to experience. If I continue to avoid the things that hurt, I continue to avoid Matthew, and he's nothing but love and happiness. It's because I love him so deeply that the pain hurts so much, but the bottom line is that I can't have one without the other right now. As that is the case, I refuse to lose one second of loving and remembering him, as painful as it is.
So, I went into the nursery...not for long, but enough. Enough to sit in the chair I never got to rock him in and to look at his name wall that he never got to see. Enough to see the changing station I imagined him wiggling around in and to see the hundreds of books I've been collecting and buying for him. Enough to look out the window that he would have looked out of and enough to dream about all that could have and should have happened in that room.
And that was enough for today.
My sweet little monkey, how my heart aches for you today. Please know that it's only because I miss you and love you so much that these things break my heart. I'm so thankful for them, though, because they remind me of the miracle of you. I'm just trying to get to where they don't hurt so much.
Monday, January 4, 2010
John and I have always said that we are a family. Telling your spouse this when you spend 10 years trying to 'build' your family is sort of the way you comfort each other when you are struggling so hard to have what everyone else considers a family to be. I have always, and still do believe that, though--when John and I got married, we became a team and our own little family.
Things have changed. Not only are we a family, but we are a bigger family now--and he and I can add father and mother to our life resumes. Those titles do not change because Matthew only lived for a few hours and is no longer with us.
I have been reading tons of books--some great, some so-so...and I've been most put off by the books that try to group the death of my child under the umbrella description of "Pregnancy Loss" --which includes everything from failed fertilizations in an IVF process to ectopic pregnancies to miscarriages for all different reasons to stillbirths to death within hours after birth to death within days after birth to death within weeks after birth....you get the idea. It's almost like some of those books discount the fact that a baby is not a member of a family unless it's been alive for some set, predetermined time frame, and there's no disservice in grouping it all together as pregnancy loss.
Technically, Matthew's death would be considered neonatal because he died within 28 days of birth. His death would also fall in the perinatal mortality statistic grouping because he died within 22 weeks of gestation and 7 days after delivery. He's not considered a postneonatal death (after 28 days of birth but before one year) because apparently there's some big difference between the 27th and 28th day of life. Whatever.
My point is that to me, whatever the classification of death his would fall in, the bottom line is that I had a child and he died. I carried him for more than 40 weeks, I gave birth to him and he died. The fact that I am not able to hold him right now, nor did I spend more than 3 minutes at BEST with him does not change that. He was my child from conception, and our family is a family of 3. Period.
So, while I understand that so many, many people love us and are praying for us, I want to ask a favor. Please, please, please do not pray for us to "finally become a family," or to "have a child," or for us "to become parents," because ALL of that has already happened. We were a family; we had a child; we became parents. Upon learning that we will be going back to Shady Grove in the next several weeks, many have wished us the best and told us that they just know we will finally become a family. They tell us that they just know we were meant to be parents and they pray that this is the year that finally happens.
Friends, as I said...it's already happened. We just are a different family. Our child is no longer with us on earth, but he is our first-born child nonetheless. Having a second child will never replace Matthew nor would I ever want it to. Any child we have in the future is his brother or sister--our 2nd (or 3rd?) child.
I know people mean well when they say stuff like, "In God's time, you'll have your family," or they offer prayers for me to "Have the strength to wait patiently for God to give us a child," and I know that what they 'mean' is that in God's time, we'll have a family-where there is a living child we are raising, or that if we wait patiently, God will give us a child we actually will be able to parent a lifetime. And I know their heart's desire is to comfort us.
Please don't doubt this...God DID give us a wonderful and precious child. A wiggle-worm who liked to kick me, liked chocolate (especially cake and milkshakes), loved to hear his daddy read to him and slept like a baby at night...and he only made our family even better than it already was with just John and me. I understand it's hard for some people to realize that just because you don't bring a baby home from the hospital, you still are parents and what you lost was your child--not a dream, your child. It *does* seem weird when the time with your miraculous baby is so, so, SO short.
But please acknowledge how precious that time is, no matter how short it ends up being. It is no less real to us than were we to have him for years. He has been part of our hearts since he was either Red Fish or Blue Fish, and he was a member of our family from the get-go. You look at the pictures of John holding his son as he died in his arms and you tell me that we aren't parents and Matthew wasn't part of our family just because he was only alive for a few hours and doesn't really fit what people *think* of when they ask you, "So, do you have any children?"
I am Matthew's mother and he is forever a member of my beautiful and beloved family.
Sunday, January 3, 2010
This was a friend's Facebook status today. Here I wrote yesterday that I thought I was doing all that I was supposed to in living my life and then very easily and quickly this morning in church did I get the slap on the hand that I needed.
Not only is it not my place to be disappointed in God, I realize that my disappointment and anger, are just misdirected. My pastor told me this morning that someone (forget who) said after losing a child that they were angry...and then the guy was told by someone else that he had every right to be angry--just give credit where credit is due. Death is not what God created us for. It was introduced to us by evil himself, and at that evil should my anger be pointed. And trust me, every day it gets easier and easier to be angrier and angrier. Remembering to whom I need to direct that anger makes me feel better--I know this may sound weird, but I mean it in the way that it surely relieves my guilt and anxiety being totally and wholeheartedly disgusted with the devil than to even contemplate anger at God. Sort of like I feel vindicated in being angry at the devil but anger at God just leaves me hurt, scared and guilty.
John told me yesterday that all of this certainly puts perspective on how fragile and precious life is, and maybe that's what I needed to remember. I admit, I got a little aggravated at him for telling me that because I have ALWAYS known how fragile and precious life is. Remember, *I'm* the one that is constantly consumed with fear of losing my loved ones because I know how easily life is ended. And this is who I was WAY before Matthew was even thought of...I was the one who was writing letters to the editor when I was 7 because I didn't want people to have abortions and their babies to die...boxing up my food (and not just the peas and lima beans) for the starving little boys and girls in Ethiopia. I am the one who people (affectionately, I'm sure) call worst-case scenario Sue because I know how fragile our human lives are. I am the one who has always craved the big, boisterous family get-togethers because I know how fast time flies and have never wanted to miss a second to enjoy my family and friends. I am the one who constantly has given thanks to God for everything--when I find a pair of shoes I was looking for, or remember where I parked the car, I always, always say, "Thank you, Lord for helping me." I am the one who has begged and plead with God for years to make me a mother, to give me the opportunity to have a child and give that child to God....trust me, I knew far before we lost Matthew how precious lives are...from conception to the last breath. I do NOT think that is what I am supposed get out of all of this.
Seeing this verse this morning, and seeing that I am commanded to rejoice in my suffering...ouch! This hurts because while I want to do what I am commanded to do, my suffering is so deep right now...it's very hard to rejoice when one feels as if they will never get rid of the lump in their throat or the gaping wound in their heart. But to go from suffering to perserverance, then character and then hope--well, I have to admit I am so thirsty for hope. And take note...hope does NOT disappoint us. Hope does not disappoint us.
So how can I be disappointed in God? I can't.
I miss Matthew so much that I still cannot breathe sometimes. Literally. I can't swallow, I tear up and I just can't breathe. I want to crawl into my bed and just cry. I think if I allowed myself, I'd literally run out of tears before I lost the motivation to cry...I want that baby in my arms so badly, I feel like I'd make just about any deal out there to have him. (Yes, I realize this is part of the bargaining stage) My heart feels like it will just explode and I feel like my world has come to an end.
But I have to say, in all of this...I still feel like this is a test...and tests have winners. I have hope that if I just hold up my end of the deal, as impossible as it seems, and continue to try and glorify God and show that even in devastation, we survive...I'll win.
And hope does not disappoint. It seems like it does, friend...beleive me....it absolutely, positively SEEMS like it does. But without it, there's nothing...and that just can't be and isn't true. My fear is that we don't realize that unless we stay the course. The course, though, is hell and easy to fall from.
BUT....hope does not disappoint.
Saturday, January 2, 2010
A lot of thoughts are rambling around my brain right now. I still continue to be in shock. I have no idea how 5 weeks can seem like eternity and yet it has flown by. I cannot tell you how thankful I was to see Valentine's Day stuff in the Exchange today. Time, thankfully, marches on.
Unfortunately, all those who tell me that time doesn't make it better but helps lessen the intensity must have a different time schedule than I do because the sting is still here...and it is still intense. Still seems so fresh, so raw. I literally can smell the hospital room. I can feel them lifting me off the hospital bed and onto the operating table. I can count every single hair on the back of Matthew's head as the nurses whisk him away--that's how close to the surface of my mind the events of the last 5 weeks are.
We have just continued to be enveloped in people praying for us and loving us...asking questions of God that puzzle them and they expect would puzzle us as well. Why? Why us? What's the purpose? What are we supposed to learn? Friends and family, and even complete strangers who instantly become friends and family tell me they don't understand--they are hurt, and hurt for us. They are mad and mad for us. They, and we, continue to remain just numb.
The thing is...I think the thing I am most is disappointed. I'm not questioning God--He's God and I'm not. But, I would be completely and totally hypocritical if I did not admit that I am disappointed in God. I know this is awful. I know this is not fair for me to feel in light of the many, many blessings that God has given me.
But it's where my heart is. I am disappointed...I have tried to live my life the way I thought God wanted. I have tried to be a good family member, a good friend and a good Christian. I have claimed God as my Lord and Christ as my Savior. I publicly and privately give Him thanks for all my blessings. I constantly try to follow What Would Jesus Do mentality and I have tried, to the best of my human ability, to be faithful and to maintain hope and faith even when it's been hard. Hard--ha ha...that word makes me laugh. I never knew what hard was until I was forced to deal with losing Matthew. Let me say right now, there are LOTS of us who don't know what the word hard really means.
I'm disappointed because in light of all that I've done...the way I have tried to live my life has been to glorify God...and yet--I'm being tested in a most torturous way. I'm disappointed because I thought I was living the way I should live and would be the recipient of the good that God says He gives to those who love the Lord. And I feel like I've been let down.
Which also makes me feel disappointed in myself for being so audacious to be disappointed in God. Who am I?
I'm also angry, but not for the reasons one might think. I'm angry because I feel like this is all a test for me...I made a promise and God called me on it. My anger is because if this is MY test, it should NOT hurt so many others so. No one else made my promise. No one else deserves this torment so that I can come out of it where God wants me to be. Most of all, John does not deserve this. He does not deserve to suffer this hell because God's working in my heart and on my faith. I'm angry because my test should be my suffering...certainly not John's and DEFINITELY not Matthew's.
I realize I will incur messages that will tell me Matthew did not suffer or that he's in a better place or question who I think I am to have input into how God decides to use each of us for His plans and I probably deserve those messages. It doesn't change how I feel, though, and I guess this is all part of the process I'm in. Like I said, I have all sorts of things rambling through my head.
I just know that if this is my test, there's no reason that John had to endure the torture he did in watching the dozens of people work on Matthew, seeing his precious newborn son be poked and prodded...hold his dying son as his heart beat for the last time. Those are things that I have the luxury of NOT facing because I can choose to NOT look at the pictures; I couldn't have been there at Georgetown as Matthew died if I tried (which I did, by the way). Those memories that John will have to deal with forever are ones he should never have--and I'm angry that he's suffering so much.
I'm sure the mood of this post shows this was a hard day for both of us and it was. But you know what? Every day is a hard day. Every day I look in the mirror and think, "Whew...must have been a rough day because I look like I just survived the Holocaust." Every day. I don't think I will ever look like myself again.
And I won't. I'm not the person I used to be. The person I am now is defeated and grieving. The person I am now is absolutely and forever will be devastated that I have clothes my child will never wear, arms that will always ache to hold him, and is trying with every breath I take to muster hope for a larger family--though there will always be one missing in every family dinner, vacation and picture. And I look like it.
That's what 5 weeks of having a hole in your heart looks like. I can't imagine what toll a lifetime with that hole will take.