Wednesday, February 24, 2010

A Better Week

This week has been a little easier for me in terms of grief.  I have felt more hopeful, a bit more like my normal self, more able to be in the present, more enamored with Caleb and Joel...and even with Bryan.  :)  I have had a noticeably absent spring back in my step this week, and it's hard to know if that's partially due to being on thyroid medicine or if it's just a better week.  I have had countless ups and downs in the grief process, and I know I will have countless more.  No matter what the cause, I am grateful for a more manageable week and a more positive outlook on life.

On Monday I had my doctor's appointment about my thyroid, and I found out that I do have hypothyroidism (underactive thyroid).  The doctor told me that there is a small nodule on my thyroid, but it's not cancerous, and the likelihood of it becoming cancerous is essentially zero, but they will monitor it over the next year or so to be sure it doesn't grow or change.  I go to a specialist (endocrinologist) in April, and at that point they will check my levels and see how much they need to increase my meds.  My TSH is quite high (32, for all you people out there who have hypothyroidism -- and I must say I can't believe how many of you there are!  My two best friends from college, one of my closest friends from high school, another college friend, a small group friend, a church friend, the list goes on and on...), and the doctor is almost certain I will need more medicine than I'm currently on, but I have to go on it gradually, or there are some adverse effects.  She also said that she thinks I developed thyroid issues postpartum, but there is no way to know if they came after Samuel or after Joel or even after one of my miscarriages.  My theory is that I became hypothyroid either after Joel or my first miscarriage, but there is no way to prove that.  And I don't suppose there is a lot of point either.  Finding out that I do in fact have this condition has probably contributed to a better week for me --just knowing it's treatable, and some of the symptoms I am experiencing can be allieviated. 

Sometimes it's the little stuff that makes a day or a moment hard, and this week that's been especially true.  Most of the time, I have felt joyful and peaceful and content, but then something small will happen, and I'm knocked off my feet.  I am guessing this will be true for a long time to come.

On Friday Bryan had the day off, and we headed downtown to the Atlanta Children's Museum for a fun family outing.  As we got in the car, Caleb was wearing safety goggles that came with a whole workbench my mom gave the boys for Christmas.  The band on the goggles was sitting on his ear funny and had folded his earlobe down.  Immediately I was hit with a wave of sorrow, thinking about Samuel and his right ear.  Most of the first few weeks of his life, Samuel laid with his head to the right, pinning down his right ear lobe, usually folded in half. When we would shift his position, his ear wouldn't lie flat because it had been folded down most of the day.  I was continually trying to unfold his little ear.  And Samuel had this little point in the top part of his earlobe that I loved.  Caleb has the exact same point.  Looking at Caleb's ear that took the breath out of me for a few moments and made me so lonesome for his little brother.  And it made me remember the far more painful last week of Samuel's life when his body was so swollen that even his ears were puffy beyond recognition and couldn't have folded in any way, much less shown the little point I loved.

Ths past weekend we had our first truly warm, sunshiny days of the year, and I kept thinking how perfect the day was -- if only we had Samuel with us.  After we got back from our walk on Saturday, Caleb and Joel ran to the backyard to play, and Bryan and I got lunch together.  While we were in the kitchen, Bryan said, "These are the moments when I can really imagine how I would have enjoyed Samuel.  While his big brothers are in the backyard, having a few minutes with just him.  I would have loved that."  I can totally picture Bryan sitting down with Samuel for a little one-on-one time.  It was a heartbreaking moment to have a glimpse of what we're missing.  And as wonderful as Saturday was, no day can ever be perfect now.  The possibility of a perfect day is forever gone.  I lament that.  I lament the days when I could call a day perfect and believe it.

One night this week I put Joel down by myself and prayed with him alone.  Usually we pray all together as a family, but for some reason we did it differently this night.  I asked Joel, "What do you want to pray about?  Is there anything you want to say to God or ask Him?"  Joel's response put a big lump in my throat.  He prayed, "Dear God, please help Samuel come back."  Then he lifted his head, looked into my eyes, and asked, "Is Samuel coming back, Momma?"  It was painful to have to tell Joel yet again -- though it's been several months since the last time -- that no, Samuel is not coming back.  It hurts my heart to know that the thing he wants most is for his little brother to be here.  I want it too.

Last night we got a voicemail from Dr. Videlefsky, Samuel's pediatric cardiologist.  He was calling to be sure we got his email about hypothyroidism and whether or not it could have contributed to Samuel's problems.  Dr. V continually amazes me.  Who does that?  Who calls to check up on the parents of a former patient to be sure they got his email?  He did some research for us and sent us an article, which he didn't have to do.  And then he calls to see if we're well and if we have any questions.  That astounds me.  He has a deep and true heart, and I always wish I could find a way to thank him, but the truth is I've been paralyzed by my inability to put thanks into words, and so I've never even sent him a letter to say thank you.  I'm ashamed of this, and I want to tell him how grateful we are, and yet I have no idea how to say it.  The worst part is, I know from the last 7 months how much it means to me when people just say something.  It doesn't matter how it's worded or how far short of what they wanted to say it falls, the fact that somebody said means a lot.  So I am baffled by my own paralysis.  Dr. V's call was another moment that left me breathless for a stretch, but I was so touched by it and grateful for it.

There are many such little moments that sneak up on me unawares and leave me reeling for awhile after them.  As much as they are hard and painful, they are also healing and treasured.  I am thankful for the moments that take me back to Samuel's side, that bring his little face to mind, or make me imagine what he'd be like now.  I am still convinced that this road of grief is God-designed, and I am thankful for the journey -- even on the truly bad days.  Most of all, I am thankful for a God who understands just how I feel even when I don't (as I told Caleb last night when he said in a shaky voice, "I'm about to cry, but I'm not sad.  I don't know why I'm crying.")  It is a compassionate, kind, understanding God I serve, and I am so glad to stand firm on Him.  Even when the world around me shakes, even when I feel like I'm falling, even when I can't see straight through my tears, my foundation is secure and firm.  The ground on which I stand cannot be shaken.  I am so glad for a God who isn't caught off guard, who doesn't lose His breath, and who is never at a loss for how to move forward.

Wednesday, February 17, 2010

Medical Uncertainties

It's been a week of a lot of doctor's appointments.  Doctor's appointments make me think of Samuel.  The last month of my pregnancy, I saw a doctor twice a week.  I had an ultrasound every Thursday and a non-stress test every Monday.  One of those appointments landed me in the hospital for overnight observation.  Throughout my pregnancy I had many, many appointments -- I saw my regular OB, the perinatologist, and the pediatric cardiologist on too many occasions to count.  And once Samuel was born, we were surrounded by more doctors than friends.  For me, the medical world will always remind me of Samuel.

A week and  half ago I had some blood work done, and something unexpected showed up.  According to the measure of TSH in my blood, I have hypothyroidism.  Essentially this means my thyroid is underactive.  When I looked up the symptoms of hypothyroidism, I was a little shocked.  It includes exhaustion, irritability, depression, hair loss, inability to lose weight, being cold, menstrual irregularities, and miscarriages.  I have all those symptoms to some degree or another, and I attributed most of them to grief.  I thought, "Of course I'm exhausted all the time -- I'm grieving.  And of course I'm irritable and a bit depressed and my body seems out of whack.  These are normal responses to grief."  It never, ever occurred to me that there might be a contributing medical component. 

I have had varying responses to this news.  On one hand I am thankful that we found this as I would never have seen a doctor for any of those symptoms, and when untreated, hypothyroidism can result in miscarriages or poor brain development during pregnancy.  As I certainly hope to be pregnant again some day, this seems like very important information and crucial to take care of.  Also, I would love to feel better -- more like myself with more patience, more energy, more joy, and not freezing all the time. However, I do think it would be foolish to expect medicine to remove all symptoms of grief.  Though it may regulate my thyroid, it will not take away my sorrow and the simple truth that I am a grieving mom. 

On the other hand, I feel annoyed that this is even going on.  Sure it's great we found it and can do something about it, but did there really have to be anything to find?  I am due for some non-drama and a little break.  But I know that's not how life works, and do I really want any life other than the one God has for me?  No, I don't.  So, I am trying to remain thankful that this turned up.

At first I felt really hopeful that medication would solve the problem and get my body well for a future pregnancy.  But after numerous tests (the official results of which I won't get until Monday), I am feeling far less hopeful.  One of the tests suggests that in fact I have hyperthyroidism -- or an overactive thyroid.  I was reminded, yet again, not to put hope or firm feet on a particular medical diagnosis.  New test reveal new things and mean new approaches and a need for flexibility.  I didn't really think I needed to learn this lesson again, and frankly I'm a little irked that I have to and have to deal with this, but so be it.  Things could be so much worse. And there is certainly a bright side to all of this.

One thing I know I don't want to face again is another miscarriage, and if finding this all out and treating it means I will avoid that road for the third time, then I am really thankful we've unearthed this problem.  I do look back on my two miscarriages and wonder if hypothyroidism was at play then and explains those losses.

The worst part of all of this has been wondering if my thyroid issues explain Samuel.  I emailed Dr. Videlefsky, Samuel's pediatric cardiologist, to ask him if he thought hypothyroidism could have contributed to Samuel's heart and lung problems, and he told me that he doesn't believe it did, but there is no way to know for sure. Before hearing back from him, I came to the conclusion that it doesn't really matter if my thyroid did or did not contribute to Samuel's death.  It can't be undone, and if God had wanted to save Samuel, He would have.  Me taking or not taking medicine wouldn't have stopped Him.  This is the story God wrote, and this is the story I am living.  There is no point in "what-ifs" and no benefit.  I am reconciled to the path God has lead us down.  Samuel is with my Savior, and there is no better place for my son.  Samuel does not wish things had worked out differently.  He is complete, fulfilled, healed, and more alive than I have ever been.  I don't wish anything else for him.  Somedays I certainly wish something else for me, but again I have to put my trust in Christ and walk forward faithfully, courageously, and sincerely.  Each day I put one foot in front of the other and choose to live the day God has made.  And this is today.  I am living it, and I am looking up to Him for the strength to keep moving forward and to keep embracing whatever He has for me.

So whatever Monday's results reveal, so be it.  That, too, will be the day God has made, and I will rejoice and be glad in it.

Sunday, February 14, 2010

Missing One of My Valentines

On this Valentine's Day, I wish I had three little boys to be mine.  I miss Samuel so much -- and so much more than words can express.  But I am thoroughly enjoying my two little valentines.  We are making heart cookies today, and this weekend we got to enjoy a snow storm.  And Bryan made some impressive pancakes.

Here is the front of the valentine Joel made for Samuel.  It was all his idea.

Here's the back of the card.  It says, "I love you, Samuel.  I love you.  I wanna sometimes go at Jesus.  I love you.  Love, Joel....I wanna see Samuel sometime.  That means I wanna go to Heaven."

A few days after Joel made his card for Samuel, Caleb asked to make one too.  Here is his:

On the inside he drew a picture of what Samuel will look like when he grows up:

On the back it says, "I love you, Samuel.  I miss you, and I can't wait to see you when I go to Heaven.  Love, Caleb"

And for the fun of it, here are a couple of snow pictures.  Joel is my adventurous child who loves to play and is always moving.  He cried at nap time because he was anxious to get out into the snow.  He had a ball building a snowman with me.

Caleb is my reserved and cautious child.  He decided to enjoy the snow through the sliding door.  And he did.  He laughed and laughed while we threw snowballs at the door.  After about an hour, he decided to go out and play and loved it, but it took him a LONG time to decide he wanted to brave the snow.  My children are so different from each other!  How I wonder what Samuel would have been like.

And while I'm at it, I will include Bryan's pancakes from this weekend.  The boys are on a huge Star Wars kick though they've never seen the movies.  My cousin, Jonathan, loaned us a Star Wars character book, and the boys picked their pancakes from it.  Caleb chose Greedo, who tries to capture Han Solo in A New Hope, and Joel chose Tessek who works for Jabba the Hutt in Return of the Jedi.


Though I am missing my Samuel today, I can see how cared for I've been this weekend.  Bryan was supposed to have class Friday night and most of the day Saturday, but it was cancelled due to the weather, so I got to have my husband home.  And there is something about freshly fallen snow that reminds me of how good God is -- how He renews us, purifies us, gently covers us with His love and grace.  Standing in the snow on Friday, I was able to take some deep breaths -- deeper than I've been able to take in a couple months.  I am grateful for the little ways in which God has cared for me this weekend.  He shows Himself faithful over and over again.

Wednesday, February 10, 2010

Two Different Realities

Yesterday I ventured down to the Georgia State Capitol Building with my friend, Candice, and two of her daughters.  This week is CHD Awareness Week, and Governor Sonny Purdue took pictures with the CHD group for the occasion.  I knew I would be a little different from the average attender since most who are active in the CHD world have kids who are currently struggling with a heart defect of some kind (or more likely multiple heart defects), and I was prepared to be asked about Samuel and to have to answer questions about him.  Candice introduced me to her friends as "Samuel's mom," and that was both beautiful and hard to hear.  I was grateful for her willingness to do that.  It takes courage to call me that -- much less introduce me that way -- and I knew she did it because she reads my blog and remembers how a stranger at church called me that, blessing me deeply.  I think she also did it because she's sensitive to my loss and would want to be called "Susan's mom" if she was in my shoes.  I felt a little teary every time I heard the title, but something in my heart swelled to be "Samuel's mom" again. 

One mom looked around for Samuel after meeting me and asked, "So where's your...."  I quickly jumped in and said, "He passed away."  I immediately saw the look of horror on her face and the kindness.  I think all these CHD parents at one point or another have imagined being in my shoes and facing life without their precious child, so there's an automatic compassion and even understanding.  She asked if I was ok to talk about it, and I assured her I was.  When she wanted to know what his heart defects were, I couldn't even remember one of them!  It took me a full 2 or 3 minutes to come up with "coronary fistulas," and that moment confirmed to me more than any other how far removed I am from the CHD world. 

In my reality, I am a bereaved parent.  At one point I was the parent of a sick child who had CHD, but now I am a mother without her son.  And though the CHD world certainly overlaps mine, it is not the world with which I most identify.  I felt like a foreigner when the parents talked about the many medications their kids take, their side effects, the dosages, the grants they can apply for to help pay for all the medical bills and the outrageously expensive special formula ($1200/month!!).  They were speaking a language I couldn't understand.  Had Samuel lived, I would have known what it meant to give 600 cc's of formula a day or to apply for Katie Beckett or to be concerned about the side effects of a particular medication.  But I don't know. 

Listening to the parents discuss all these things that are so close to their hearts and are their daily reality, I was reminded yet again that they, too, are living a nightmare. I wouldn't wish my grief on anyone, but I wouldn't wish their fear on anyone either.  They have to face the continual dread that the bottom will drop off of the boat.  They fear sudden cardiac arrest, blood clots, seizures, not qualifying for the next surgery, cyanosis, and a myriad of other terrible possibilities.  As much as I treasure the month I spent with Samuel, I would never want to relive it.  These parents are continually living this painful and fearful reality where their kids are unwell and around the next corner tragedy may by lurking.  I hurt for them. 

Recognizing the fear my friends face each day reminds me of a quote from one of my all-time favorite books.  Once upon a time, I taught junior and senior English, and I was privileged to teach Cry, the Beloved Country by Alan Paton.  In it, one of the characters says, "My friend, your anxiety turned to fear, and your fear turned to sorrow. But sorrow is better than fear. For fear impoverishes always, while sorrow may enrich."  I found this to be so true while at Egleston.  The fear of the first three weeks was very impoverishing.  It took so much from me.  But the sorrow of the last week, when we knew Samuel was dying, was deeply enriching, and the sorrow of the last 5 months has enriched me more than I will probably ever know.  There is something inherently ugly, horrible, and robbing in fear, but sorrow doesn't have to be that way.  It's deepening, growing, and sometimes even refreshing.  There is something beautiful and redemptive in sorrow.  I have yet to find the redemption in fear. 

I don't know what this means for my friends -- because how could they possibly not be afraid?  And of course it's better for them to have their children than to lose them.  I guess it means that I hope they can somehow find a way to live without fear being the dominate emotion -- to live in the joy of each moment with their child, to live with hope for a future, to live with faith in a God who provides whatever they need when they need it, to live each day as it comes with grace, peace, and joy...and to hand their fear to God and let Him carry it for them, knowing that He is more than capable to hold every ounce of fear they feel and more loving than we could ever imagine -- desiring to cradle them close and soothe and heal their hearts just as they want to soothe and heal the heart of their child.  And God CAN do that, though they cannot.  I want them to be able to rest fully in His goodness and love and presence.  It will be my new prayer for these people I have only recently met but who I care about in a way I wouldn't have thought possible, for I can imagine being in their shoes, and it's a hard, hard road to walk.

By far my favorite part of yesterday was seeing Susan and Sarah Beth, two of Samuel's friends from Egleston, awake and smiling and in their parents' arms.  Previously I have only seen these precious girls hooked up to numerous machines, puffy from surgery, and under anesthesia.  Yesterday I saw them as I hoped to see Samuel.  It was good for my soul to ride next to Susan in the back seat and to giggle with her about her cookie and to tease about where her food goes and to see her point to all her body parts and smile.  It was a delight to see her blue eyes light up and to carry her into her house while she rested her head on my shoulder.  I loved seeing Sarah Beth look around the capitol and at her daddy and mommy.  I am so happy that these kids are doing well.  I am grateful for a God who can work these kind of miracles and who does.  And I am grateful that He knows best, that His will is better than my own.  How could I go yesterday and say anything other than "It is a good God who we serve!"  Thank You, Jesus, for the glimpses of Your work in these children, and thank You, Jesus, that my precious child is safe in Your arms and full of joy and life, even though I don't get to see it in this life.  I am glad someday I will see Samuel even more alive than the kids I saw yesterday.  Thank You!"

Sunday, February 7, 2010

CHD Awareness Week

This week is Congenital Heart Defect Awareness Week.  Our friend, Candice, made this video about some of the "heart kids" at Egleston.  We met her while Samuel was in the hospital, and her daughter, Susan, was in for her third heart surgery.  Samuel is about 4 1/2 minutes into the video. 

You can watch the video by clicking this link:
CHD Awareness Video

On Tuesday I am planning to go down to the state capitol with Candice to hear a statement read by Gov. Purdue.

I still feel so new to the "heart world," and in some ways I don't even feel a part of it since our chapter is closed, and so many continue on this journey, but CHD has changed our lives forever and is a permanent part of our story and the story God is telling in and through us.  I don't want to ignore CHD, and I'm trying to figure out how this "heart world" fits into our lives now.  I currently have no idea what that looks like, so this is an initial step.

Wednesday, February 3, 2010

Valentines, Tears, and Prayers

Yesterday the boys and I started making homemade valentines.  I let them each pick whose valentine to make.  They had each made two when Joel was ready to start another.  I listed off a bunch of people he could make one for, and he suddenly burst out with, "I'nna make one for Samuel!"  It hadn't even occured to me to make a valentine for Samuel.  I told him what a great idea it was, and he picked out the hearts he wanted to use, the color paper, etc.  He scribbled on the inside with some crayons and then told me he was ready to write a note.  Here's what he told me to say:

"I love you, Samuel.  I love you.  I wanna sometimes go at Jesus.  I love you.  Love, Joel."

Then he said, though he didn't want me to write it in the message, "I wanna see Samuel sometimes.  That means I wanna go to Heaven."

I was touched that my sweet Joel wanted to send a valentine to his baby brother in Heaven.  It amazes me how my children continue to grieve -- and often in such healthy ways, too. 

Caleb has been having a hard time lately.  He changes moods and emotions on a dime.  The other night we were racing to get ready for bed.  Bryan and Joel were in one room rushing, and Caleb and I were in another.  Caleb and I finished getting him in his pajamas and all ready for bed and went running into Joel's room to show them we were done.  Caleb was giggling and having such fun, and we threw Joel's door open, and all 4 of us said, "Ta-da!" with joy and laughter.  Suddenly Caleb was beside himself in tears and just sobbing.  I scooped him up and help him close and tried to soothe him.  In a couple of minutes he lifted his head, looked me in the eye and said, "Momma, sometimes I start crying and crying even though I'm not sad.  I don't know why I'm crying."  I can totally relate.  Poor kid.  I think he was overwhelmed and confused by his tears and that made him cry all the harder.  I think it's his grief working its way out.

The next night when we were all kneeling on the floor praying, Caleb prayed, "Dear God, please, please, please, please, oh, please, please, please help us not to miss Samuel and be so sad."  He was truly pleading with the Lord.  I was grateful for the glimpse into his heart.  I need to talk to him again about how it's ok to be sad and it's good to miss Samuel, but beyond that he was showing us his sorrowful heart.  He grieves, and Joel grieves -- just as Bryan and I grieve.  And 5 months isn't enough time to heal my little sons' hearts.  Why would anyone think it's enough time to heal ours?  This will be a lifelong journey...maybe for all of us.