Apparently There are More Important Things to Worry About

Our Halloween this year was not a traditional fun filled, care-free, silly costumes, load your buckets with all kinds of sweets sort of holiday. It started out normal that way though.....

Last year I took our boys trick or treating to some stores (which is common around here) and it's quite nice for the little kids, especially since they do it during the day. Since we had such success last year we decided that this year we would do it again. I had the boys dressed up. They were looking particularly cute in their little costumes. I packed them up in the car, making sure to grab the camera and other Halloween trick or treating essentials (stroller, snacks, an umbrella...) and we headed off.

The weather seemed fairly cooperative when we pulled into the parking lot. We were ready for some candy-filled fun. We started at one end of the businesses and worked our way down. Things we going smoothly enough... Braxton had his hands preoccupied with a grilled cheese sandwich and Quincy was happy enough to repeat 'Trick or Treat' at each store. As we nearing the end of the strip my phone started ringing. I looked at the number and didn't recognize it. Normally I don't answer the phone unless the number looks familiar. Just as I was about to pick it up to answer it stopped ringing. My immediate thought was that it must have been a wrong number. However, just as soon as I set my phone back down on the stroller it started to ring again. I looked at it once more to see the same unfamiliar number calling.

 I answered.

Immediately I heard my doctors voice say "Kati, it's Dr. Lin... how are you doing?" At this point Quincy is still happily trick or treating and I'm slightly distracted. I responded with "Oh, I'm fine. I'm just trick or treating with my boys."

Looking back on the situation I should have picked up on a few cues... 1:) doctors don't usually call just to chat and 2:) that she immediately got to business by asking if I had a minute to 'talk'.

I told her 'sure I have a minute'-- thinking nothing odd about her phone call. I took a minute to pull Quincy to part of the sidewalk so we could sit down and I could better listen. She further explained that my blood work came back and that there were some abnormalities. Again I should have been more concerned at this point, but for some reason I wasn't. I continued listening. She went on to tell me that because of the abnormalities shown in my work that my baby was at a higher risk for something called Trisomy 18. She explained that the effects of this disorder were very severe. She told me that it was very rare to carry any further than 32 weeks, that  if I was fortunate enough to carry that long that most likely the baby would be still born, that even more rare-- if my baby survived it would have very little brain function and be wheelchair bound.

You know the cartoon sound effect where you hear a loud high pitched whistle followed by a thundering booming bomb crash?

That's exactly how I saw the situation.

Here I was going merrily about my Halloween day, with not a care in the world when suddenly there was a huge bomb my doctor was delivering via cell phone. I was clearly in shock and could even remember having the same feeling after my car accident. Although my head was hearing all the awful things that she was saying over the phone my body wasn't registering any of the pain yet. I could feel my weight shift slowly down towards the side walk. She followed up our phone conversation by telling me to go home. Sit down. Think. Take it easy. She also said that she would be referring me to genetic counselor and to expect to hear from them no later than Wednesday.

I remember hanging up the phone, Quincy looking at me expectantly and saying "can we go now mom?" I felt numb. Like I was seeing and hearing the things all around me, but I wasn't really there. I stood up straight, took a deep breath, and told Quincy we could finish. We only had 3 stores left. As we walked I started to descend down into my body again. I slowly began to feel the weight of pain threatening to crush my very being. I recognized that trembling movement in my stomach and realized I was about to loose it. Tears started to well up in my eyes and I quickly blinked them back as best as I could. I didn't want my boys to see me like that. By the grace of God I was able to hold back my emotions for 3 more stores. Just as we finished the last store the clouds turned dark and it started to rain.

It was like the weather was a reflection of my emotions. A once sunny care-free day suddenly looked full of gloom and despair. We hurried quickly back to the car and I manged to get everyone safely buckled inside. I grabbed my phone and sent Tyler a quick text: 'I need to talk to you. We're almost done trick or treating. I have some bad news about baby.' Tyler doesn't always have a chance to check his text messages during work so I was slightly surprised when he responded right back with: 'What?' I couldn't bare to write everything in text and replied: 'Too complicated to text. I'm really upset right now.' Poor Tyler... I probably scared the crap out of him right then. He told me later that his immediate thought was that I had had a miscarriage.

A few minutes later we were headed out of the parking lot when he called me. In hind sight I probably shouldn't have answered my phone... after all, I was driving, it was raining a little, and clearly I was distressed (perhaps a deadly combination for driving). He asked what was wrong and I could barely choke it out between sobs. He calmly tried to listen and decipher what I was saying. I explained about the doctors call... the bad news... and perhaps the worst case scenario. He did what a good husband does: he asked if I was okay, how he could help, and exclaimed how much he loved me.

We eventually made it to the bank to meet Tyler (I had every intention at the beginning of the day to take the boys trick or treating over by Tyler's bank, but after getting the news I couldn't bare the thought of pasting a weak smile to my face). When we walked into the bank all the women in there squealed with delight at my boys' cute costumes. They fussed and complimented and I think I managed a pleasant upturn of my mouth. Tyler told me when I got closer to him that we could go home. It was only 4:00 and I asked him if that was okay. Jill, his boss, had told him to take off early and to also take as many days as he needed before he came back to work. I immediately understood that they had talked about our situation. I was entirely grateful for her generosity and concern. She gave me the kindest smile and whispered "I hope everything works out." I could feel the sincerity in her voice and immediately had to blink back more tears. Later Tyler explained that she and her husband had been through similar circumstances. I can't express how thankful I was for her understanding and support of our tough situation.

The next few hours were sort of a blur. I know that I could barely talk, each time I did sobs worked their way up my throat and tears escaped my eyes until they burned. My thoughts frequently drifted towards our little Pula. **Would we ever see our baby live? Would I have a miscarriage? How could we take care of a child with such extensive needs? Would we even be able to celebrate our child's birthday before we planned a funeral? **

Each new thought tore through my heart and a new wave of pain shot through my body. I felt as if I couldn't bear any more. I tried to push everything out... to think of nothing, but it was useless.

I couldn't ignore the simple facts: the baby in my stomach would live or die. I had no control. Either way the child would be forever engraved on my heart and soul. 

Tyler did a better job of keeping it together than I did when we got home. I went to our bedroom.... made a phone call to my parents, cried a lot more, and eventually pulled myself together to spend a couple of hours with our boys before bedtime. I did some researching that night (not too much, as I had been warned by my mom that the pictures were pretty awful). I learned the simple facts about Trisomy 18-- something of which I knew nothing about until 2 days ago. 

In short there are several kinds of Trisomies, one of the most common is Trisomy 21 (Down Syndrome). Trisomy 18 (Edward's Syndrome) is when three chromosomes make up the 18th chromosome instead of the regular two (one from each parent). Down syndrome is similar in that there are three chromosomes on the 21st chromosome instead of two. The difference between to the trisomies is that 18 is much more physically severe. Babies diagnosed with Edwards syndrome are usually still born. Their bodies aren't able to develop properly. Those who do live suffer great physical handicaps... babies aren't born with basic brain function to tell them to suck, swallow, breathe. Once born (the >10% ) commonly don't survive past the first week. It is rare that they live to their first birthday. Babies also have distinct physical handicaps clenched fists, rocker bottom feet, strawberry shaped heads... they have many problems with their hearts, which have small holes throughout them-- usually resulting in many surgeries, kidney failure etc.

There are many other facts about Trisomy 18... most of them very disturbing for a parent to be, but I felt empowered by the knowledge of what we were up against. 

The small blessing in disguise: I learned that Trisomy 18 isn't DIAGNOSED by your abnormalities in your blood work alone, you are just shown that your are at higher RISK. After a phone conversation with my nurse I learned that all my other lab work showed my risk for the quad screen were only 1:10,000. The reason why they narrowed my risk specifically to Trisomy 18 was because of a part of the screening for that was 1:100. Much higher than my other results. While 1:100 is much higher than 1:10,000 it's better than 1:10. A risk of 1:100 is also the cut off between what's considered "normal" and "abnormal" in these screens, so I'm at the top end, which is good. The other part about these screenings that is reassuring is that they aren't an exact science. It's like the weatherman who looks at the Doppler 8000 (or whatever weather man machine they use) and predicts the weather based on what information is in front of it. Then he gives a "prediction" of 20% chance of rain and so on. If I'm losing you, what I mean to say is that there is room for error. While I can take only a little comfort in that chance for error I have been taking our situation seriously and preparing myself the best that I can.

While talking to Tyler I remembered something that had crossed my mind early in Monday morning before my doctor called.  For no particular reason I had this 'thought' pop into my head.

I was cleaning the house and suddenly thought about a lesson from a few Sunday's back from a particular sister in our ward. She explained during her lesson that her husband and her had struggled with infertility for years. They wanted children so badly. At the time she was trying to find a job teaching, as that's what she got her degree in, but could only find work with special needs classes. A short while later they found she was expecting a baby. Little did she know at the time that her son would have Down Syndrome. She explained that it was easy to see God's plan for her life later. He was preparing her for a special one of his spirits with very special needs. 

What I was able to take away from her experience and what thought occurred to me early that Halloween morning was that 'God prepares us for the things we are going to go through'. The preparation can be subtle and often hard to see during the process, but looking back it is always there. Although we may not be able to see God's plan for us (or even our unborn children) we can have faith in His guidance through the journey. 

Monday night I spent plenty of time speaking with God. I told Him how scared I was, how grateful I was that He's allowed me raise some of His children here on Earth, how grateful I am for two healthy strong willed boys, how thankful I am to have a loving priesthood holding husband by my side, how fortunate I feel to have family-friends-and members of the church rally around us at this difficult time. Ultimately I asked God to send me a little comfort... so that I could stand tall as we waited for the next step. I told Him I knew He couldn't tell or show me everything, but that I could settle for a little physical rest. By the end of my prayer  my pillow was thoroughly soaked from tears, but I felt the presence and love of my Heavenly Father.

It was enough to get me through one more night. 

Tuesday Tyler stayed home with us. What another blessing that was. I wasn't able to sleep the whole night (it's pretty rare that I sleep an 8 hour stretch- especially when I'm peeing frequently due to pregnancy), but I did sleep for 4 straight hours. I felt blessed. The Lord gave me just what I needed--- rest--- physical and emotional rest. It was enough. I was happy for that. Tuesday (Day 2) proved to be a little better. I was like someone exhibiting the symptoms of trauma on Monday.... first shock, then panic, then emotional and physical pain, then numbness. Tuesday I felt something different I felt the first sliver of hope. It was small and perhaps to someone so wrapped up in all the other dealings might have gone unnoticed, but it was there.

Hope.

I have experienced many phone calls, text messages, emails, and personal conversations expressing concern and love for our family. God has comforted me through all of you. Your kind words, your prayers, your love... all have given me a little more strength. Strength that wasn't there on Monday.

Day 2 also brought us a little more 'good' news. I was finally able to set an appointment with the Genetic Counselor and we willn get an ultrasound done. While this ultrasound will be different than the one we were so anxious to have next week it will give us some good indicators...We will have a better idea of whether we should be celebrating or preparing for difficult future needs. Thursday is our big day... we go in.

We listen.

We wait.

I don't want this to be all doom and gloom because in the time I have spent personally pondering the seriousness of our situation I have come to realize that God has a sense of humor. In some not so subtle ways He has wiped away all my previous concerns. I was worried about a horrible third Cesarean-- no problem now, now I would give anything to carry FULL TERM. I was worried about this being my last pregnancy and coming to terms with 'not being able to have MORE children' -- no problem now, I'm just grateful I already HAVE children. I was worried about having another boy (a selfish concern, I know, but it is hard to imagine not having a little daughter of my own to do those special girly things with)-- problem solved... I would give anything to just hold a baby in my arms. Boy. Girl. It doesn't matter. I was worried about gaining lots of weight and looking 'fat'-- heck now I don't even care if I look like the goodyear  blimp, just as long as I get to see my sweet Pula.

In one day God kinda chuckled and said, "You want to worry about stuff? Here. Let me show you things to REALLY worry about."

 And it's true.

 I get it now.

I see the errors of my ways and have asked for forgiveness.

I have come to be extremely grateful for everything I HAVE and not too worrisome about all the things I WANTED. God is giving me another chance to increase my faith in Him. I guess I'm stubborn and need to be taught the importance of relying on HIM. Okay. Point taken. I'll do better. In fact, that's exactly what I'm doing right now... putting ALL my faith and trust in Him that His plan is perfect (which of course I know it is), but that it might not be an easy one.

I am blessed.

 I am loved.

I am grateful.

I believe.

I hope.

I live.

Although it is difficult to be 'entirely happy and carefree' at this moment, I am at peace. We will keep you posted on our what happens with our doctor appointment tomorrow.

(And I promise to post some cute pictures of the boys trick or treating--- before it got all crazy--- next time.)

Thanks for the love, prayers, and well wishes.

They are felt.