my struggles.

I’ve been meaning to write this post for awhile as it’s been on my mind a lot the past few weeks.  We have heard that we are handling this well.  And we feel like, for the most part, we are.  But what I want, what I need, people to know is that it’s not us.  We’re not awesome people.  We’re not spiritual giants.  We’re not great with hard things.  None of those things.  It is truly the work of God in us.

 

It is His grace to give us the perspective we have, and I thank Him often that He has chosen to do so. 

Call to me and I will answer you, and will tell you great and hidden things that you have not known. 

Jeremiah 33:3 

 

 

It is His strength that sustains us to walk this journey through day in and day out.  Good day and bad day. 

But I will sing of your strength; I will sing aloud of your steadfast love in the morning.  For you have been to me a fortress and a refuge in the day of my distress. 

Psalm 59:16 

 

 

It is Him who makes us brave. 

Have I not commanded you?  Be strong and courageous.  Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go. 

Joshua 1:9  

 

 

It is His love that allows us to love Gabriel so, so much! 

We love because he first loved us. 

1 John 4:19 

 

 

 

That being said, I don’t want to give the impression that we have it all together or that every day is full of wisdom and peace and understanding.  My toddler watches a lot more tv on most days than I’d like.  And I’m not even going to try to break him of his paci obsession before 2, like we’d originally planned.  That boy is hooked on his paci – it’s his comfort thing and we all need a little extra comfort these days.  My house is often disheveled.  I need help with a lot more things than I like to admit.  And I’m tired.

 

A couple of Sundays ago, I had a bad day.  Tommy and I went to church separately because Jack was on the tail end of a nasty virus.  So he went to the early service and I went later.  And as I sat there by myself during the service, I cried during nearly the whole thing.  Music, Lord’s supper, sermon, prayers, all of it.  When I came home I thought I was ok but quickly realized I wasn’t as I unloaded on Tommy for anything and everything.  Then I just laid on the couch and cried uncontrollably, deep, heavy cries, for a long time.

 

I was ok after that.  I picked myself up by my bootstraps, and I walked upstairs and played blocks with my boys.  Then we worked on Gabriel’s room and had a normal afternoon, and I was fine.  And I’m finding it happens like that.  And I’m not complaining.  I’m not trying to sound full of self-pity.  I don’t write these words for you to feel sorry for me.  Truly, it’s just part of this journey.  And I’ve been hesitant to share these moments for fear of sounding like I’m throwing a “woe is me” party.  In fact I write these words today from a good day, really.  I’ve not been too emotional, we’ve had a nice, normal evening aside from dealing with a toddler the day after time change.  And as I sit here watching tv, typing this, watching Gabriel dance around in my belly, and battling heartburn/indigestion because I drank a Sprite at dinner, I feel like a normal pregnant lady.

 

So in conclusion, I hope my words here show an expression of honesty and not of pity-seeking.  I hope they serve as a reminder in the future for me of what days were like during this time.  I hope they, at some point, can provide encouragement and hope to someone else on a path like ours.  And that is what I wish for, really, in all of these posts.

 

the one i wasn’t looking forward to.

Tommy took the day off when I had my 28 week OB appointment.  Since days off don’t come too often, we decided to take advantage and scheduled a meeting at the funeral home for that afternoon.  After a tiring morning at the doctors, why not have a hard afternoon.

 

I’ve mentioned before that we wanted to go ahead and plan for the funeral things now.  We don’t want to have to deal with it while we are deep in grief over losing our baby.  And we don’t want to have to deal with planning when I am just days out of giving birth, if it should go that way.  I want to again explain how we think of it because that is so important to us.  We in no way see this as giving up hope.  We are so hopeful that Gabriel will live for a little while.  We are full of hope that God will bless us with time with Gabriel.  But we are also acutely aware of the reality of our situation — that this syndrome is fatal.  So eventually we will need these plans.  It sucks.  But it’s true.  We are hoping that Gabriel will be just as stubborn as Tommy and me and will pull a “funeral plans, mom and dad?  i’ll show you” and live for a nice long while 🙂  If we don’t need these plans for awhile, AWESOME.  We have them when we do.

 

The meeting was very nice.  Mainly because the man we met with was very kind and very good with us.  I love Knoxville and let me tell you one of the reasons why.  You find out that you know everyone somehow.  I love it.  I really missed that when I was in Maryland.  Turns out that the man we met with knows my sister, and his sister is the director of Jack’s preschool program.  Small world.  Also, I found out that the mom of a friend who I grew up with works there, too.  It was comforting to see her there also.  So we were off to a good start feeling as comfortable as possible as you sit in a funeral home to discuss what will happen after your baby boy passes away.

 

Mainly, Tommy and I gathered information.  We talked about what we wanted to do, we asked questions, and we listened as he shared information like how they would get the body whether at the hospital or at home.  Things we needed to know.  As I’m sure you’ve gathered by now reading this blog, I’m a planner.  I don’t like to be caught off guard, so knowing details, even hard ones, is important to me.  We talked for quite awhile and before we left this man asked if he could pray for us.  This man who we hardly knew, but was so sympathetic and understanding as his family prepares to welcome their second baby into the world in a month or so.  And he prayed for us, for our family, our sweet baby Gabriel.  Tommy says it was another example of God lining our path with specific people.  There has been a lot of that.  I just can’t get over that the man at the funeral home prayed for our family right there in that hard place.  I am thankful for him and thankful to God for the people we’ve met through this journey.

 

I have to mention the kind of day it was when we went.  It poured all day long.  Not just small amounts of rain, but storming, flooding roads, massive amounts of rain that was forecasted to turn to snow that night.  When we walked into the funeral home it was pouring down.  And as we sat there talking about these things all I wanted to do was to stand out in the rain and let the water pour over me.  I felt like all I could do was stand outside, looking out at how our reality looks in this world, frozen in this moment of anguish while the cold rain washed me numb.  But I sat there.  And when we came out, it had stopped, and there was a little bit of light in the sky.

 

We left and drove over to one of the cemeteries we’re considering.  We got out and walked around, taking it all in.  And as we left I found myself catching my breath at the view.  The view of the mountains was gorgeous [this picture hardly does it justice], but more than that, on this particular day the Great Smokey Mountains were full of smoke.  It was rolling over the mountains as the clouds quickly passed over.  The combination of the storm rolling through and clearing coming behind was breath taking.  And I can’t help but relate that to our lives.  As we walk through this storm, this season of suffering, sometimes it seems so dark, but there’s always clearing.  There has been since the very beginning of this.  It’s not the clearing I would choose.  My choice of clearing would be a healthy baby boy who we get to raise along side his big brother.  But that’s not our clearing.  Our clearing has come through people being the hands and feet of Christ in our lives.  It’s come through meals, messages, cards, paintings, gifts, ultrasounds, painted bedrooms, tears cried with us, kind doctors, love and support, prayers from so many.  It’s come through renewed eyes that see the true beauty in life.  It’s come from a stirring of something deep within that’s never existed before.

 

cemetery2

 

So what I’m learning is that God always brings joy alongside the suffering.  And the joy is deeper than any I’ve known before.  And it’s beautiful to see the pairing of pain and joy, and I’m thankful God has designed this unique alignment of the two.  For the joy, the clearing, is what continues to propel us as another storm lines up on the horizon.

 

 

cemetery

 

big appointment.

I remember 28 weeks being a big appointment when I was pregnant with Jack.  We had an ultrasound where we got to see him, and I had to do the gestational diabetes glucose test.  This week was my big 28 week appointment with Gabriel.  It was a long one, although not the longest we’ve had there.  We’ve spent hours there before sitting in rooms talking and crying.  So it was nice yesterday to feel kind of normal.  We were like all the other women who come in for their 28 week appointments, except for the fact that we’re entirely different.

 

28weeks

 

 

I was nervous about the fasting because I have had such a good streak going the past few weeks with the nausea and vomiting.  If I go too long without eating, or don’t get something in me first thing in the morning I tend to get sick.  Thankfully everything was fine yesterday, and around 12:30 I scarfed down 2 corn dogs, cheese fries, and a lemonade.

 

I got my blood drawn, 3 different times, had another growth ultrasound, and a doctor’s appointment.  The ultrasound went really well.  It’s always great to see Gabriel in action.  The sonographer said he’s the fastest baby she’s ever seen.  He moves around a lot and apparently pretty quickly at that.  He is an incredibly active baby, and I’m so thankful for that.  I’m so thankful that I get to feel him moving around.  He is certainly alive, and he reminds me of that quite often.

 

The important information from the ultrasound…  Gabriel is doing great!  They did a test called a Biophysical Profile, and he got a perfect score!  That did my heart good.  While it doesn’t change our reality, it tells us that he is doing just fine right now and that brings us great joy.  He still has the big issues.  The choroid plexus cysts have not resolved.  His brain has some issues.  He still has a severe heart defect.  But he is doing well in there right now, and we are thankful for that.  The BPP evaluates several things including movement, muscle tone, heart beat, and breathing.  He was good in all of those areas.  His heart beat was nice and strong, and he was very active, as usual.  They estimate his weight to be 1 pound, 14 ounces.  Almost 2 pounds!  We’re really excited about that.  He’s still below the 5th percentile for babies his gestational age.  The average baby at 28 weeks weighs 2 1/2 pounds.  But we’re glad he’s still gaining weight, and we will continue to cheer him on and pray he gains more!  The piece of bad news from the ultrasound is that I now have polyhydramnios, which means too much amniotic fluid.  Right now it doesn’t really matter.  We know it’s happening because of Gabriel’s genetic syndrome and we’ll just keep an eye on it, as with everything else.  If there continues to be too much fluid, it could cause me to go into labor earlier, as my body would think I’m further along than I am.  Tommy keeps reminding me that this is not unexpected; I was just hoping it wouldn’t happen.  We were told when we first found out about Gabriel’s diagnosis, that this is a common thing to happen.  Trisomy 18 babies often have trouble swallowing the amniotic fluid the way babies normally do.  This can lead to a build up of excess fluid because the typical circulation of the fluid isn’t happening.  Hopefully it won’t be an issue for us — maybe next time we have an ultrasound my fluid level will be normal.

 

Our visit with the nurse practitioner and doctor were good, as always.  They’re so kind and always take their time with us.  The nurse practitioner told me I’d lost a pound, so we talked for awhile about eating.  I’ve not gained much weight in this pregnancy and am probably below a normal weight gain.  She said that she doesn’t think it’s impacting Gabriel’s weight but that it couldn’t hurt for me to try to gain more weight.  She said they had a patient who had a very small baby, and she started eating Magnum bars and her baby got bigger.  Granted, that’s not science-based medicine, but it’s something.  I could gain 50 pounds this pregnancy and Gabriel not get any bigger, but it’s certainly not going to hurt me to try to eat more and gain more weight in hopes of it helping him gain weight.  So… I bought some Magnum bars.  And they are delicious!  There’s no doubt that I’ll be putting weight on now.

 

The doctor spoke very kind words to us.  He told us that he doesn’t see patients our age going through this.  That we’re unusual.  And that we are both handling everything very appropriately.  He said he’s very proud of us and how we’re handling it.  And he hugged me and gave me a kiss on the forehead like he always does, and I cried right there in front of him… again.

 

Between not sleeping a whole lot the night before, fasting the whole morning, getting a bunch of blood drawn, seeing our baby moving around, and realizing again our reality, it was an exhausting morning.  I’m thankful those appointments aren’t every day, or week.  But at the same time I’m again, so very thankful for the care we’re getting at that office.  It was a hard morning but a good one.

 

Gabysheartbeat His heartbeat was nice and strong!

 

 

Gabysarm

And that precious arm.  Which is getting bigger!

 

 

gabriel’s room.

Gabriel,

Your room is ready for you, and it looks great!  We have been working hard, preparing, painting, and decorating your room.  Your big brother Jack was a huge help!  You’ll get to know this, but I love fixing up and building things for my family.  It is so special to me that I got to work on your room, and when we lay you down in your crib, you’ll be sleeping in a room that was filled with our family’s hard work, music, laughter, and prayers.

 

 

 

[An excerpt from Tommy’s letters to Gabriel.  More on Gabriel’s room to come.]

thirds.

It is March — can you believe it?  How is time going by so fast?  And as I’m reflecting on this new month, I am realizing that we are entering a season of thirds.  This month of the year, the third month, is also the time I officially enter into my third trimester of pregnancy.  The third trimester of my pregnancy with our baby who has a third chromosome.

 

I’d have to be blind not to see this is our season of thirds.  I don’t know what all is in store for us this season or how long it will last for — certainly longer than the month of March, as our lives are forever marked and changed by this.  But I’ve also been reminded lately that with this story comes a lot of responsibility.  Responsibility for our sons, our family, but mostly in the sharing of our story and God’s work in our lives.  I pray that we are intentional and walk well in this aspect of the journey during this season.

 

 

toddler sickness.

We have a toddler.  We are not strangers to sickness.  While we feel like our toddler seems to get sick a lot, I think it may just be a normal toddler thing.  He’s young, his immune system is developing, and he’s getting exposed to some nasty stuff in gross ways around his toddler friends.  Makes sense that there’s a lot of sickness.

 

Yesterday morning Jack woke up and seemed a little off.  Turns out he had a fever which just kept climbing and reached over 103 last night.  And yesterday afternoon the stomach bug portion kicked in.  I felt so bad for the little guy.  He has not felt like playing at all, so we have spent a lot of time the past 2 days curled up on the couch watching tv and movies.  I love the very rare snuggles but hate that he’s so sick.  I’m guessing it’s the same thing that plagued Tommy last weekend and knocked him out of commission for the entire weekend.

 

sick day2

He’s never crashed on the couch like this before.  Bless him.  Also, as I post this I notice 2 other things.  1 yes, he is wearing Christmas pjs on the last day of February.  That’s how we roll.  And 2, this picture is chaos, mess, but then again so is life with a toddler.

 

 

sick day3

I love extra snuggles with my sweet boy!

So when Tommy got home from work last night he wanted to stay with Jack while I ran out to pick up some dinner.  He thought I could use the alone time out of the house [yes!] and he wanted to be with the sick little guy.  But Jack did not want either of his parents leaving, so we took him with us and one of us stayed in the car with him while the other ran in.

sick day

I posted this picture on Instagram saying something about how I’d run out to grab dinner and these things and could you tell how my day had been?  I learned yesterday that toddlers can’t tell you they need to make a mad dash for the bathroom — hence the carpet cleaner.  Fun times in this house.  Here’s to hoping sickness is out of this house!

On that note, will you please pray that I stay healthy and don’t get this virus?  I feel bad to ask for that since Jack’s been so sick, but it would be bad for Gabriel and me for me to get taken out with this one.  I still take medicine every morning and sometimes in the afternoons, too, to keep me from throwing up every day on a normal day, so a stomach virus would not help my cause.  Please pray for Jack to continue to heal up.  And thank you, as always, for praying for our family!