Quick Update

We’ve had a million and two doctor appointments since I last updated on how Jonathan is doing. Between the chaos of Josiah being sick, and then the rest of us (minus Ethan thankfully) picking up this horrible cold that I will always look back on as “the plague,” we haven’t had a lot of free time on our hands. Every week I have at least one appointment for the pregnancy and at least one appointment for one of the other kids.

Per Jonathan’s last echocardiogram nothing heart-wise has changed. We keep holding on to hope every time we go in that today will be the day mouths drop open in shock as they tell us everything looks great. It hasn’t happened yet, but we keep praying for it. The good news though is that nothing has gotten worse. There was a fleeting moment of terror when the cardiologist came into the ultrasound room to take a second look at something that concerned him. It turned out to be nothing, but still, in that moment when the doctor is pursing his lips together and intently studying the ultrasound monitor you can’t help but hold your breath for an eternity and wait for the proverbial “other shoe to drop.”

Our latest maternal fetal specialist ultrasound showed that Jonathan’s growth is right on target and everything else looks great. Essentially, outside of a major heart defect, this is about as “typical”¬†of a pregnancy as one can get.

Yesterday I had a routine OB appointment and everything was on track there as well. Heartbeat and movement were good, belly is measuring as it should, and glucose test results were normal.

Until yesterday our understanding was that all of our care (fetal cardiology, OB, maternal fetal specialist) would transfer to Denver providers at 32 weeks. Now believe it or not, lots of people vacation during the summer. As it turns out, medical professionals are people too. Shocking, I know. ūüėČ
We’ve run into some scheduling issues with some of the various team members being out for vacation over the next few weeks. This means we will stick with our local medical teams for a couple extra weeks before transferring all care to Denver. This does save us some commuting time in the weeks prior to relocating to Denver.

I’ve spent quite a bit of time the last two days trying to get appointments scheduled here locally as our providers here had been anticipating those follow up appointments would occur in Denver. Over the next few weeks the frequency of our appointments will increase as Jonathan will be closely monitored for his health and well-being in utero. This means continued echocardiograms, ultrasounds for growth, and we will also begin doing a weekly biophysical profile.

Here is a link with some additional info on the medical side of how things look for Jonathan’s heart and what intervention after he is born will entail.
http://www.sistersbyheart.org/content/what-hlhs

Thank you again to everyone for keeping us in your thoughts and prayers.

 

https://www.gofundme.com/frasier

The Calm and The Storm

I have intentionally been an absent voice during this entire process. I have not shared anything because I do not want to hurt you. It doesn’t take a psychology degree or ESP to see the pain in your eyes when I tell you about Jonathan’s plight. It tears me apart to see my friends, family, clients, hell even complete strangers hurt. This is not your burden to bear and I feel that the less I say the less likely I am to hurt you, which in turn means I don’t hurt myself.

One fall I took a fishing trip to Alaska. I was fishing in a seaside port town called Whittier. My friend and I were in a rocky cove with completely serene waters. So serene, one could peer down from the 30 foot cliff and see schools of salmon making their 10 to 15 minute laps in the pristine cove. When the salmon would enter the cove fellow fishermen would start calling out as to alert the neighboring fishermen that the Salmon were headed their way.

Until this moment, I had never seen or been a part of a team fishing experience. This was exhilarating. One after the other like dominoes collapsing on each other the fisherman would call ‚ÄúThey are coming.” My friend and I followed suit and screamed at the top of our lungs and laughed when¬†the school swam by. Our exhilaration caused us to miss the fish as we had inaccurate casts from being atop¬†our 30 foot cliff. To get a more accurate cast on the salmon‚Äôs next lap, I climbed down the rocks to the waterline and precariously hung out at the 20 foot deep waters edge. I figured with the water being as calm as a lake, what is the worst that can happen? I fall in? Who goes fishing in Alaska and doesn‚Äôt expect to get a little wet? I continued to fish from my perch.

As time past the alerts from fellow fishermen, even my friend, became fewer and more spread out as everyone was packing up and heading home. I couldn’t blame them. The fishing was pretty slow but I didn’t fly to Alaska to get skunked. An hour or so later, I heard a very distressed man scream inaudibly at me. For the life of me I could not make out what he was saying. Soon after, another man came over and began screaming and motioning toward the sea. This was followed by my friend joining the couple and motioning for me to come up. I decided to climb back up the cliff and see what the commotion was all about. Maybe they want me to see a whale.

The serenity of the sea had recently been replaced by a ‚Äúnoise.” By the time I carefully scaled up the wet cliff that ‚Äúnoise‚ÄĚ had turned into a roar. The previously serene cove had turned into a swirling, tumultuous ocean that had engulfed my precarious perch. I, being from Colorado and having limited ocean fishing experience, was completely ignorant as to how fast, violent, and unannounced the high tide coming in could be. Ten minutes later my perch was under 10 feet of debris filled water that was viciously crashing into the cliffs I had just scaled.

I have dreamt about that cove many times in my life. Sometimes in my dream I do not make it back to the top of the cliff. Instead, I fall into God’s washing machine at high tide. My life is currently at the waters edge and the tide has come in. This tide is a combination of raw panic, angst, anger, and fear of what is to come physically, financially, and emotionally. I cannot internalize this anymore I need to share. I needed my fellow fishermen’s help on that nearly fateful day in Alaska and today God called down to me playing at the waters edge to again warn me of my ignorance. God advised me that internalizing Jonathan’s plight will only make certain that I never escape the tumultuous sea. I cannot overcome this on my own. I know that I am going to have to share my experiences. More over, I know that I am going to have to lean hard into God. Harder than I ever have. I know that I have slipped into the sea. I will soon be drowning in my own emotions. But alas there is hope:

When He got into the boat, His disciples followed Him. And behold, there arose a great storm on the sea, so that the boat was being covered with the waves; but Jesus Himself was asleep. And they came to Him and woke Him, saying, “Save us, Lord; we are perishing!” He said to them, “Why are you afraid, you men of little faith?” Then He got up and rebuked the winds and the sea, and it became perfectly calm. The men were amazed, and said, “What kind of a man is this, that even the winds and the sea obey Him?” (Matthew 8 23-27)
I am truly sorry if my future posts ruin your day, hopefully they can become a bright spot.

Every, every minute.

I don’t remember when or at what age I stopped keeping track of my birthday adventures. As a kid I could recite back every birthday celebration from every previous year. A few still stand out in my mind like my 8 yr old princess party, ¬†traveling as an unaccompanied minor to visit my grandparents for my 10th birthday, or my joint “sweet sixteen” slumber party with my BFF. I also particularly remember my 24th, 29th, and 30th birthdays. Somewhere in there though, the rest of them become a blur.

Last year I spent my 35th birthday with my BFF when her husband so generously flew me (and 5 month old Elijah) to NY to celebrate her 35th birthday (a few days before mine). It was such an amazing time that I will forever be grateful to both of them for.
At the time I certainly did not anticipate how this year’s birthday would be spent. I never imagined I would be pregnant again, much less in the current situation we find ourselves.

This year on my birthday I attended an early morning fetal echocardiogram. Danny and I then spent another hour or so meeting with the cardiologist who will follow us locally when we’re not in Denver. I went into the appointment with a faint glimmer of hope that they would be like “surprise! Things are looking better!” Alas, that wasn’t the case, if anything, things were slightly, just by a hair, worse.

The doctor didn’t tell us anything we hadn’t already heard, we simply rehashed it, and he gave us time to ask any other questions we’d thought of. Unfortunately no one has answers for the questions we have. When will we be able to hold him?¬†Will he be able to breastfeed? Will he need to be on oxygen? ¬†Will he do ok at this altitude? Will he have complications? Will he live? Will he thrive?

The initial outlook is surprisingly good. The doctor told us to look at it like this: getting through the first surgery is the hardest part then the first month in the hospital and getting home are the biggest hurdles. The next hurdle is the first six months and getting through the 2nd surgery. Then after that things usually smooth out until the 3rd surgery. From there, many kids live relatively normal lives.

But then it starts getting hairy again. The working right side¬†of the heart that Jonathan has is intended to receive unoxygenated blood from the body and pump it to the lungs at a low pressure. The left side of his heart that he is missing does the job of receiving oxygenated blood from the lungs and pumping it at high pressure to the rest of the body. The goal of the 3 surgeries is to replumb the heart so that the right side of the heart does the left side’s job. Essentially the unoxygenated blood will bypass the heart and go directly to the lungs. The right side of the heart will then receive the oxygenated blood and pump it to the rest of the body. Therefore you have the “low pressure pump” doing the job of the “high pressure pump.” This extra work on the heart can cause people to go into heart failure at young ages like 40 years old, 20 years old, even in the teen years.

I’m not going to lie, that’s a hard pill to swallow. I’m 36 and Danny is 40. Those ages sounded so old when I was 18 but it feels pretty young now. We have babies for goodness sake. Life is barely starting! Obviously it’s not an outcome that any parent wants to hear for their child.

In reality, there are so many tragic things that can happen to a parent’s child, during their lifetime: car accidents, addictions, disease. All of these things can unexpectedly shorten or decrease the quality of your child’s life, at any time, any age. I suppose if I had to pick I’d rather my child have a quality life in the time he has than grow up to be a drug addict who never finds peace or happiness.

I guess this is a bonus that we now have that perhaps other families don’t have. We will have to first learn ourselves, and then teach our children to live life to the fullest and take joy in every moment. I’m reminded of a line from Thornton Wilder’s¬†Our Town.

“Oh, earth, you are too wonderful for anybody to realize you. Do any human beings ever realize life while they live it–every, every minute?”

Perhaps Jonathan’s life will be short, but perhaps any of our lives will be shortened. There are no guarantees.
I hope I never take another second for granted. I hope to teach my children not to take one single moment for granted. I think that’s what it means to live a life with no regrets. Not to live carelessly and recklessly, refusing to learn from mistakes because YOLO (you only live once) nor to live so cautiously as to the pursuit of no passion; but to live every moment of sorrow and joy, taking it in fully and wasting nothing.

“If you are not afraid of dying, you will not be afraid of living.” –@pastorbrady

The Road Ahead

It has been a month that we’ve been living with our world wildly attempting to spin off its axis. Some days are better than others. Sometimes I even notice that several days in a row have slipped by where I haven’t cried. Today was not one of those days, neither was the day before, nor the one before that.

When I learned to drive I was taught to always be aware of my surroundings but to focus on where I was going. Take notice of the disabled car or accident on the side of the freeway but don’t stare at it. Why shouldn’t I look longer than a quick glance?
Because we inevitably steer toward what we’re focusing on.
When someone crashes into a police cruiser with its lights flashing on the side of the road it’s not usually because they didn’t see it, it’s because they were looking right at it.

As a 16-year-old I had a hard time staying in the middle of my lane. I would look down at the painted lines on the road to determine where the car should be. Soon I’d drift too far one way, then too far the other way in my attempt to correct. I learned that I shouldn’t be looking down, focusing on the guide lines. I needed to look up toward where I wanted to go. When I kept my eyes always focusing on where I needed to be, in the center of the road ahead, staying evenly in the lane was an easy task.

I still have to remind myself of this technique when I am driving through a particularly bad rain or snow storm. When the weather makes it difficult to see the road I’m not always sure that I’m in a lane and driving where I should be. The temptation for me is to look down to try to determine where the stripes on the road are. Then instead of guiding me in the right path I’m suddenly struggling to keep my car straight and I’m not paying attention to potential hazards ahead. I must remember to look beyond the swirling, blinding snowflakes and focus on where I need to go. I get out from behind the car that is swerving in front of me and find a vehicle that is driving steadily in the direction I want to go. I focus on that car. It keeps me on the road, headed in the right direction and I can see the pitfalls it encounters before I get there.

It’s so easy to get focused on all of the things that are completely beyond my control right now. I find myself feeling overwhelmed and sinking into despair.
What if we can’t find a place to rent in Denver? What if we find a place but it turns out to be a disaster? What if we rent a place, then the worst happens and we don’t need it anymore?

The chance of our baby surviving surgery is higher than the chance of not surviving it, but the reality still exists; what if we’re that one family out of ten who loses their baby?
I think about the surgery. I think about what my tiny baby will have to endure, what he will look like and the pain he will be in. This is when being a nurse does not come in handy. I know too much. I know what open heart surgery entails. I know that children are often undermedicated for pain. I know I can’t bear to see my child go through this.
Ethan was born with the assistance of vacuum extraction. The resulting bruise and swelling to his head was so magnificent I couldn’t look at it without crying. I kept his little newborn cap on for the sole purpose of hiding the injury from myself because I couldn’t bear to see it.
How in the world will I bear this? I think about it and I sob as the pain, grief, and fear overtake me. Then I realize that Jonathan can probably feel my sadness. I don’t want that kind of sorrow to settle into his being. I want him to know joy, love, hope, and peace.

I wrote down a word that was spoken during church on Sunday (@hendersongirl)

We will keep our eyes fixed on You. You will finish what you began.

It’s time to refocus and get my eyes fixed on Jesus.
I feel like this is a lot easier said than done. I am not even sure how to pray anymore. It’s not like I’ve never been through anything hard before. Until about four months ago I honestly¬†believed that I had already endured such difficult situations that I had been adequately prepared to face any trials the future may hold. Still, I find myself crying out “Jesus where are you?”

Where do I want to be? I want to be with Jesus. Focus on Jesus.
Where is Jesus? Jesus is seated at the right hand of the Father. (Ephesians 1:20)
He is seated at the right hand of the Father because the work is already done.
There is no reason for me to panic because none of this is a surprise to God. So I have to say “come Holy Spirit” and fix my eyes on comfort and healing; on the comforter and the healer.
Where do I want to go? At the end of this journey where do I want to be? I want a healthy baby. I want a son who is living life to the fullest. I want all of my sons to live life to the fullest, and Ethan weighs especially heavy on my heart already.
How do I get there? I don’t know how to get there, all I know is where to fix my eyes.

I wish I had something poetic or inspirational to share but right now all I can do is focus on the Lord instead of focusing on the wreck that I am trying to avoid.

If you think of it, pray for us, especially Ethan right now.

Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. ¬†We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God‚Äôs throne.¬†Think of all the hostility he endured from sinful people; then you won‚Äôt become weary and give up. ¬†After all, you have not yet given your lives in your struggle against sin….So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong.
-Hebrews 12:1-4,12-13

Even If

 

They say sometimes you win some
Sometimes you lose some
And right now, right now I’m losing bad
I’ve stood on this stage night after night
Reminding the broken it’ll be alright
But right now, oh right now I just can’t

It’s easy to sing
When there’s nothing to bring me down
But what will I say
When I’m held to the flame
Like I am right now

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

You’ve been faithful, You’ve been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You’re able
I know You can

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

It is well with my soul
It is well, it is well with my soul

 

“Twin Cousins” (Gender Reveal Video)

Did I mention that Jonathan shares a due date with his cousin?
Here’s a fun video from our joint Gender Reveal

https://wwww.instagram.com/p/BQvp_vFj2ev/

(My sister hand makes the gender reveal footballs  www.etsy.com/shop/Babykees )

Blameless

When we shared our situation on Facebook I felt that I should include the cause (or lack thereof) for Jonathan’s heart defect .

Each doctor we have met with has confirmed that this is not caused by something I did or didn’t do during the pregnancy. It isn’t caused by age or genetics. As one specialist put it “for lack of a better medical term it is simply ‘bad luck.'”

Danny wondered why I felt I needed to explain this.  It really is a private issue and does it really matter what the cause is?
Well, it mattered to me. I think as parents, especially as moms we feel responsible for everything that happens to our children. We take responsibility and ownership for things that don’t belong to us. Since I am already a mom to a special needs child I am intimately and well acquainted with this burden of guilt.

As humans we want to know “why?” Sometimes¬†we need¬†we want someone to point a finger at, someone to blame. Do I want to know why my oldest son has disabilities? I sure do. Ultimately though, I always end up pointing the finger at myself for¬†his disabilities.
Many years ago when it was determined that he needed glasses I was devastated. Out of all of the many other issues he had going on, this seemed relatively minor. Friends couldn’t understand why¬†it was such a big deal but one friend got it. She said “it feels like one more crappy hand you’ve dealt him from the gene pool.”
If the reason he is disabled is genetics then I’m the one who loaded that gun. If it was birth trauma, well I’m the one who gave birth to him. Maybe I should have picked a different doctor, maybe I should have screamed louder over things that didn’t seem right to me. Maybe his disabilities are simply the consequence of me having a baby out-of-wedlock.

It sounds ridiculous and irrational. However illogical it may seem¬†though, those are the thoughts of guilt that lurk in the back (and sometimes the front) of my mind and heart. They haunt me. If I didn’t have enough trouble forgiving myself for the role I must have somehow played in my son’s disabilities, all of those thoughts are also things that other people have suggested or accused me of over the years.

We¬†never think it could be us who has the disabled child and fortunately for most of us it’s true. I used to think it too. I¬†suppose I imagined that people who had disabled children were somehow special. They were somehow prepared for and somehow always had an idea that it would be them. Why? Because it generally never occurs to¬†someone, “hey¬†some day that could happen to¬†me, an ordinary person.” So we try to make sense of why something happened to someone and we come up with the only logical conclusion, “they must have done something to cause this,” or even “they must have done something to¬†deserve this.” Because if they didn’t do something to cause this; if it was truly a random occurence then that means we have no control. It¬†means it could happen me.
I have no control over life and it could happen to¬†me. Bad things happen to people for no good reason at all¬†and that’s a little too scary of a thought to consider, therefore they must have done¬†something to earn this burden.
On my own I’ve had these thoughts to explain the reason for bad things happening to my family. I already carry this burden of guilt and responsibility on my own without needing anyone else¬†to point fingers at me.

Now I have another son who is being born with a disability. I am devastated. I feel responsible. My only job thus far in his life was to create a safe environment for him to grow healthy and strong, but somehow I have already failed him. Clearly I am not meant to bring life into this world, because I keep messing it up. What did I do wrong? I was even brave enough to ask the question aloud “what did I do wrong?” I have asked it repeatedly. Did I eat or drink something wrong? Was it my bad genes? Maybe it was simply my bad attitude, maybe I didn’t pray enough.

Of course in my mind, if I am asking these questions, then surely other people will think the same thing. Surely everyone else must blame me too.

I am like every other human on this planet, I long to be loved and accepted.  I want to be absolved of the blame and guilt, whatever that absolution looks like.

The answer each doctor has given to the question of blame is: there is no blame to put anywhere for this heart defect.
Are you sure? Because if I did something wrong, maybe I can go back in time and do something differently to fix it.
Nope, nothing. I am blameless.

I have been attending a Bible study on Ephesians and one of the concepts we focused on is this very issue of being blameless.

Ephesians 1:4:

“For he chose us in him before the creation of the world to be holy and blameless in his sight.”

Did you catch that? He chose me to be¬†blameless¬†before the creation of the world. This is monumental. Not only did God determine I am blameless, he determined it before the creation of the world. That means that he knew me before the creation of the world. He knew¬†all of the things I would and wouldn’t do and chose me to be blameless with full knowledge of those things. So¬†even if¬†I was responsible for my children’s disabilities; even¬†if I had done something reckless to cause them, in Christ¬†I am blameless. I am forgiven.

I wish I¬†could pass this truth on to all of the other mammas (and daddies) of special needs kiddos. You are blameless. God is a big God. He has forgiven you. He doesn’t hold you responsible. Forgive yourself. Give yourself a little (or a lot) of grace. God has.
Maybe you don’t know why your child is disabled or maybe you do know the reason. Why do these bad things happen to us; happen to our children? There is no good reason except that evil exists in the world.

So as I cried out to the world “this isn’t my fault” trying to absolve my own irrational sense of guilt, God has been at work loving me and showing me that I am blameless. I’m not fully there yet, who knows if I will ever fully be there. I am thankful for all of the people in our lives who have demonstrated so much to love us. Thank you for not pointing the finger of blame. Thank you for hugging us, for praying with us, for standing by us even though none of us knows what to say or do right now. We might never be able to individually say it out loud to each one of you but thank you.