Meeting the Neonatologist...

We had a great experience meeting with the neonatologist last Tuesday but let me back up a bit and tell you about our last couple appointments

When we had our first ultrasound with our new doctors, it was our first visit to Swedish instead of Valley Medical. We got a better picture of what delivering there was going to look like. It is funny how certain things may “hit” you in different ways. Todd and I both find ourselves struggling in different areas, but again this helps us to be strong for when the other is weak.

Vivien's sweet little profile

I really enjoyed the ultrasound, getting to see her move around, her little profile (she seems to have a cute little turned up nose like Lucie) and just finding out more about her. The big issue that we did discover is that she does have a hole in her heart or a Ventrical Septal Defect – a VSD. This didn’t phase us too much as we knew this was common in babies with T-18. There is a possibility it could close on its own before birth, or in the first year. Surgery can be something to consider but we would have to find a doctor willing to do this which might be difficult. That is something we just won’t know until down the road and can really evaluate after she is born.

It was interesting, that what Todd really struggled with was seeing her hands in the typical T-18 position. It is

Vivien's little hand in 3-D.

 not just a clenched fist but a fist with the index and pinky finger raised up and crossed over the two middle fingers. It was clear on the 3-D ultrasound that this was how she was holding her hand. Todd said that it made it seem more real to him and more final that she truly did have T-18. We know that one of the reasons they hold their hand this way is because at this point, they are so mentally disabled that their brain is not able to communicate to their hand to open. Todd struggled with grief and even some anger over the next couple of days at the fact that our little girl is starting life with such a big mental handicap. He took it to God, but was very honest with me and with Him about his struggle.

What “hit” me was how the NICU was run and the rules that will be set in place. Todd and I will be the only ones who will have full access to Vivien. If we want to bring guests in, they can just come in one at a time and they must be with either one of us. There can be only two adults at her bedside at one time. The only children who can come in are siblings, and they must be free of colds or any type of illness. With 4 kids, it seems like there is always someone starting or finishing something. What if they got colds when she was born and she only lived a short while and they never got to meet her? At this point, my fears were a bit irrational, because we have found out since then that if we needed to and if it really came to that, they have a separate room that we could bring her into where they could meet her without exposing themselves to the other babies. But I know that at least in the NICU their time with her will be limited and so will the Grandparents time with her and it made me sad. I understand that with babies with T-18 on comfort care, they allow the families to hold them and there are really no rules. But if we want to give her a chance and do more aggressive treatment, she will need to be in the NICU.

Again, I had to take a step back and be reminded that God will work things out. I have to trust Him in this and not worry about the unknowns and the what if’s. I haven’t even given birth to her yet, and I can see how easy it would be to want to take control and try to fix things. We will do what we can and have decided to limit some of our social interaction and playdates starting in August. But again, we have to leave it in God’s hands.

I love that God can take it when we feel angry at Him. He’s big enough to deal with it. I really believe that it is ok to be angry at God if it is part of a process and if we continue to communicate with Him about it and move forward through the process of trusting Him. I love how in the Bible David communicated his anger to God. It’s not about going to other people with it, or being angry and withdrawing from Him, but simply being open and honest with Him about how we are feeling even if it’s anger. “In your anger, do not sin" (Eph 4:26). I’ve learned that it’s not wrong to be angry, but it is what you do with it. And I love that Todd went to God with it. – And I had to do some of this myself.

My little temper tantrum with Him was about something I've always wished for, but again, I know that I have to trust Him. With every baby I’ve always prayed for twins. When we ended up needing to use fertility drugs in conceiving Maggie and Silas (we had no problem with this with our later kids), I secretly hoped that the result would be twins. As I got older, I knew my chances for twins were higher with age (as well as higher for Down’s syndrome or other anomalies) and I was so hoping for twins. I don’t enjoy pregnancy, but I love the babies, so a two-for-one deal sounded great for me. Both Todd and I have grandfathers who are identical twins and I have aunts who are twins. So genetically you’d think we would be shoe-ins. After the T-18 diagnosis, I struggled with this. It’s not that I didn’t want Vivien, but how much better would it be if she were healthy and a twin?! My quarrel was with Him. I knew He had control over this. I trusted Him but still felt honestly mad.

Again, Todd was strong where I was weak. He reminded me that truly, God has gifted us with Vivien. Todd feels like it is an honor that God has seen us worthy to care for a special needs child. He knows who Vivien needs and He picked her to be in our family, at this time and for us to be her parents. We are blessed by getting to serve her and love her for as long as we are able. Again, He is trustworthy. My temper tantrum didn’t last long, and thankfully God soothed my ruffled feathers and helped my heart to calm down. I love how He can actually change our emotions when we go to Him. He doesn’t leave us there. And although I resented it at first, I needed Todd’s perspective. It is truly an honor to care for Vivien.

Both Todd and I were looking forward to our appointment at Swedish this week, because from the very beginning we were hoping that meeting the neonatologist would tell us a lot about what direction we will be headed with this hospital. Like I said in the previous post, we are there because we know that this group of physicians specialize in high risk births and babies but at this point we had only met one doctor. There is a team of 10 doctors in our group and 13 neonatologists at the hospital. If I go into labor naturally, we will just go with whatever doctor is on call that day so we really did want to meet as many doctors as we could.

We had another ultrasound and not much has changed with regard to the VSD or her smaller size. The new doctor we met with again assured that while many parents choose comfort care, they are quite willing to do what we wish when it comes to more aggressive care for her as far as oxygen, intubation and stabilizing her after birth. We are still considering the c-section route and he gave us some good pros and cons, but said that ultimately, the decision was up to us. He encouraged us to write a very clear birth plan and have it in place so that both the doctors and nurses will understand that we are not going to be going with the usual comfort care route.

But we felt like the neonatologist was going to be the kingpin. While the doctor is responsible for me and for birth itself, the neonatologist will be the one who really oversees Vivien’s care after she is born. What was great is that the neonatologist we met with also happened to be the medical director for the NICU. We were looking forward to hearing from him where he stood.

He was a man who might do well doubling for Santa Claus with his white hair, beard and fatherly manner. He spent quite a bit of time talking with us and listening to our perspective. Todd explained that we truly appreciate how all of the doctors here have been open to us wanting to take a more aggressive approach to her care. We said that we have spent quite a bit of time researching and talking to parents, both of babies with T-18 who have passed away, as well as parents with living children. He was very interested to find out if there were any who were local and we were able to tell him about a couple that we have met with or are meeting with.

He seemed quite open to hearing us and then explained some of the more specific things that they would be able to do for us, but was also clear about things that they didn’t have the equipment or capacity to do that somewhere more specialized, such as Children’s Hospital would. He did make it clear that if it came to heart surgery, we would have to find a physician who would be willing to take her case and that would most likely be through Children’s. But he assured us that as far as stabilizing her well after birth and then doing a thorough evaluation of her overall health would definitely be something they would be thorough in and able to do. From there we could make some decisions as to what to pursue to help her and support her life.

It didn’t seem at all like he was pressuring us to consider the comfort care route. He said that it seemed like we had done our research and while they worry about young couple of first time parents who don’t fully understand the ramifications of carrying for a baby with T-18 or the full extent of the handicaps, he felt confident that we had a good grasp on the gravity of the situation and the long term expectations for a baby living with T-18.

At one point, when he was explaining things to us and after I’d responded positively to some of the terms he was using, he asked if we had medical background. I laughed and said that I didn’t but that we have been studying so much that we have definitely become familiar with some of the medical care that Vivien will need (although I know we have so much to learn). I explained that Todd is a paramedic and we have already heard plenty of jokes about parents of special needs children becoming “physicians without a degree” simply because of what they have to learn. I’m grateful for Todd’s knowledge as a paramedic. I felt complimented though.

But the real jewel of the conversation came when he encouraged us to be aggressive in making sure the doctors and nurses that are on duty when we go into labor truly understand what we want. He said something like “Don’t be afraid to speak up. You may need to be your baby’s advocate just to make sure that everyone understands the kind of care you want, even if you have a birth plan written up.” What surprising advice from a medical director! We were so encouraged. He said that he will be telling his colleagues, but it is always important, not just to write it out, but to verbally remind everyone of the route we are taking, that we do want the neonatologist present and want her stabilized after birth. He told us that we could tell them that we’ve had a conversation with him. It sounded more like we wouldn’t have to be convincing them to give us the care Vivien needs, but that we would just need to make it clear what we want so that there is no confusion.

I know that each doctor, nurse or neonatologist will have different personalities and ideas, but so far, every person we’ve talked with has assured us that their philosophy here is that they do defer to the parents’ wishes. Again, we will be alert, prayerful and watchful, but we came away feeling very happy with the conversation.

As Todd and I talked on the way home, he said that it still sometimes doesn’t seem real. Like it isn’t truly happening to us, that we will have a baby that we will have to meet and love and then someday let go. While we hope she will live a long time, the probability of her outliving us is very slim. Even if she grows into childhood and teen years and at some point, we will most likely have to say goodbye. He struggles with this thought.

My struggle is not with her living or dying, but with wanting to understand her and care for her in a way that she has as little suffering as possible while she is here. I know that she would be happy in heaven and in some ways I would honestly feel that any of our children would be safer or more secure in heaven. I know that from both a spiritual and emotional standpoint – heaven is the happiest and best place to be. As Scripture says, it is “gain.” But in reading the FB pages so much of the parents’ conversations have to do with figuring out what is going on with their child with this or that issue, and this or that medication or reaction. Sometimes I feel very helpless to think that she could be in real trouble and I wouldn’t know what to do. And sometimes the doctors are stumped as well. Todd has often reminding me that it is called “the practice” of medicine for a reason. While we look to medical professionals for their expertise, they don’t know all. But the Holy Spirit does – and we are going to lean hard on Him and trust Him to lead us and show us how to care for Viven well.

Doctors, Nurses and Controversy, Oh My!

After finding out that Vivien had T-18 we made a decision to switch from our regular doctor who delivers at Valley Medical, to a group of doctors who are familiar with high risk pregnancies and deliver at Swedish. Our doctor recommended this to us, since Swedish has a better NICU and the ability to do more for Vivien when she is born.

But we had much to learn. The medical community generally looks at T-18 as a lethal diagnosis and advises very little intervention. “Incompatible with life” is a common phrase that you hear, although not from our doctors, thankfully. The sad truth is that most babies diagnosed with T-18 are aborted. Obviously because we believe we are made in God’s image, we see things differently. We want to give Vivien every support that she needs to live. At the same time, we don’t want to prolong suffering or try to keep her here if it is her time to go.

The first visit to the doctor was definitely eye opening. When we asked about the birth and about a c-section, his response was that they don’t usually do c-sections when babies have T-18 because the baby is “going to die anyway” and that would put the mother at risk. This made me angry, to say the least and I felt like a mama cat with her fur up and claws out. But it wasn’t a surprise as we had been told ahead of time that this was the general consensus of the medical community, even though we know there are many children with T-18 who have lived. The further we got into the conversation, the more we realized that “heroic measures” by the doctors’ definition were very different from our definition. A c-section would be nothing to us, even if it meant that she lived even a short while longer and we could meet her. Feeding tube and intubation right after she is born certainly didn’t seem like heroic measures, but ways to support her life. As we spoke to him further though, he made it clear they are willing to do what we ask when it comes to Vivien.The group of doctors there will listen to the parent’s wishes and that they will defer to us with decisions about her care.

At that point, I felt like the Holy Spirit spoke to me clearly to calm down, to love this doctor and to be gracious. We are going to be alert and do all we can to support Vivien’s life, but we need to not come to the table with an antagonistic view of the medical profession nor do we need to storm out in judgment. Everyone needs Jesus, including doctors and nurses who we may not see eye to eye with. We can be respectful, while making our wishes known and being alert to what Vivien needs and following through. The same people who may see her as one who is “going to die anyway” are the ones who actually have the skill and equipment to save her life and, if they are willing to do what they can then we need to work with them in a loving and respectful way. We ended up leaving that day on a positive note and with a good working relationship. Because there are 10 doctors and we have no idea which doctor will be the one delivering Vivien, we will need to be very clear in our birth plan and in making sure we understand everything being done for us and for her.

Since that first conversation, c-section, feeding tube, intubation, CPR, oxygen, surgeries and so much more are all words that have been swirling around in our heads. . Again, our best resource has been connecting with parents both of babies who have died and of those with living children on blogs, facebook groups, by e-mail and by phone calls. A general majority I would say are believers simply because those who choose to let their babies live rather than abort are often Christians, although there are loving parents out there who are not believers.

In talking about their babies, some have told us they wished that instead of staying in the hospital, they’d taken their babies home sooner to be able to enjoy the bit of time they had with them instead of having a plethora of medical procedures done that didn’t really extend their life. If babies are sent home to die they are generall given comfort care and hospice, and the families are able to spend time with them. Having their babies whisked away from them for intervention, instead of spending time with them didn’t bring about the results they’d hoped. This often happens to those who are not diagnosed with T-18 until after birth, as the doctors do much more for the babies if they do not realize that they have T-18 at the beginning.

Others have children who have lived longer, or are currently alive because of the medical procedures done, and because they fought tooth and nail for their lives. Some of them have truly had to go to bat to persuade the medical professionals to give their babies the care they needed, going before committees, or getting second opinions. For some, it is a great deal of work to find doctors and hospitals that would do these procedures or surgeries. In the end, they have enjoyed their children, who can laugh and smile and enjoy a good life, despite their mental and physical issues such as not being able to talk or walk. Parents have described them as life changing and a beautiful part of their family.

The “quality of life” issue is a very sticky subject, because who decides how quality of life is defined? Is it the parents or the doctors? One of my favorite stories came from Bella Santorum’s mother Karen. She said that Bella had just had a procedure done at the hospital recently and was doing well, sitting up in bed, playing with her toys, laughing and interacting, very clearly able to enjoy life, give and receive love. Karen looked over at a doctor standing in the doorway who was watching Bella and she was taken aback as she saw tears rolling down his cheeks. She compassionately asked him if he was ok, and his response was, “I didn’t know kids like Bella existed. I feel so lied to. In medical school all they teach us is that these kids don’t live.” She said he had this moment of joy to see Bella so happy and alive.

Some of the research can be frightening. Not only are there doctors who absolutely refuse to give care to babies with T-18 because of their philosophies, or because of the cost, there are also doctors who have changed the medications or care without informing the parents. While it would be nice to think that these are isolated stories or that they don’t happen often, unfortunately, it is much more common than we’d think. One family was sent home for “comfort care” for their baby, with a lethal dose of morphine. When the mother double checked with her pediatrician she found out the truth. She has helped other families as a T-18 advocate and said that this is actually something that is very common.

Thankfully, there are also stories of doctors and nurses who have worked hard and advocated for these babies, wonderful pediatricians and hospitals who have done everything that the parents have asked and more to help support their children and keep them alive. They have spoken with fondness of some of the most skilled and loving medical professionals they have known. And they get to know them well because though their babies live, there are still severe handicaps and much that needs to be done for their care.

One of the conclusions we have come to, is that there may be more hope for Vivien than we thought, if she is given care and intervention. The grim statistics we first heard about so many of these babies dying are actually a product of a philosophy of care, not because more cannot be done for them. At the same time, this is still a serious condition. We understand death can still come and if Vivien lives, there will be much care and time required. But we want to be ready to do what we can.

Listening to all these stories caused Todd and I to realize that fear could be a huge factor and actually lead our decision-making process, instead of the Holy Spirit. I know that when we meet Vivien, we could want her to live so badly that we fear her death and try to keep her when it is time for her to go. At the same time, we don’t want the fear of her suffering or fear that we will make a bad decision to keep from giving her the care she needs medically. We want to do all we can to give her life and support her.

As Todd and I prayed and thought through this, it was overwhelming at first. Both of us felt at different times and in different ways that the Holy Spirit said we didn’t need to decide everything ahead of time. We need to research, to be wise, to have a detailed birth plan and be ready. We need to be alert to all that the doctors are doing and clear that we want to be informed about all medicines and procedures. But there is so much that we will not know until she is born and the Holy Spirit is trustworthy to guide us then. Instead of looking to ourselves – and believing that every little decision we make could mean life or death for our baby girl – all we just need to obey the Holy Spirit. He has always made Himself clear to us. Trusting Him and obeying is actually relieving. It is not up to us, we simply have to trust and obey. If the doctors make a mistake, that is out of our control but not God’s. If we make a decision, believing and trusting God to lead us – if Viven lives, He is trustworthy. If it is her time to go, He is trustworthy. It was such a relief to realize that we can put it in His hands and leave it there. This truth has taken away much fear and anxiety.

In addition to this, I felt like God spoke to us about being a witness even to those doctors who may have a completely different perspective on Vivien’s life than we do.  I’m sure that there are those who believe they are being compassionate toward these babies, and though we may disagree, we need to not see them as the enemy, but again, as people who need Jesus.  We need to be thankful for a group of doctors who are willing to work with us.

We will be meeting with the neonatologist tomorrow and while the doctors we have seen are more responsible for my care and for the birth itself, the neonatologists in charge of the NICU will be the ones who will be actually making the decisions about the care of Vivien. We are very interested to know their philosophies and looking forward to the meeting with many questions ready.

Ultimately neither we nor the doctors are in complete control of Vivien’s life, but God is and He is trustworthy. We know that we can rest in this truth and trust Him to guide us. Please continue to pray for us and stay tuned to see how it goes…

Growing Some Love

As the Holy Spirit prompted us to celebrate Vivien’s life, I knew I needed to learn and understand more of what was in store for us. Todd had already been visiting websites, blogs, support groups and doing research, but I had only briefly looked into it. It was so difficult emotionally that I decided to set it aside until we knew for sure, rather than getting worried and worked up about it when it might not be in our future. But now that we had a diagnosis, I began in earnest. In researching, I began to be overwhelmed with the magnitude of decisions that would need to be made, should she live through birth. I will write more about some of the controversy surrounding t-18 in the medical community later. As I researched though and started opening up my heart to learn more about babies and children with t-18, God began to connect us with many parents.

We wrote a letter to our friends and family and sent it out via e-mail. Then a couple of days later we put the letter on our blog and announced it on Facebook. The response to our letter was overwhelming. People were so loving and supportive and kind. So many people reached out to us in so many ways, but one of the best was when they would connect us families they knew who had had babies or children diagnosed with t-18. I’ve spent hours messaging, talking on the phone and e-mailing parents and asking about their stories. We have learned both from those whose babies have died, as well as from those whose children are living with t-18 . In the cases of the babies who died, almost all were beautiful stories, despite the outcome and each mom spoke with fondness and love for the experience they went through, despite the difficulty.

In the cases of those whose babies have lived or are living children, I felt like truly, God was “growing some love” in my heart for these children. I will be honest, he very first time I went on a t-18 website, it was difficult to look at the pictures and know that Vivien would be different. But the more I have delved into the lives of these children and their families, the more I have grown to love their beauty. It is amazing to me, that though they can’t talk or walk, how happy they are, how interactive they are and how much joy and love the parents both give to and receive from their children. Their facebook pages are full of photos of smiling happy kids. Here are two little girls whose parents’ we've been in contact with that we've grown to love.

Lilliana (3 yrs)

Abigail (4 Yrs)

At the same time we are learning about the incredible amount of time, energy and work that goes along with a child living with trisomy 18. While there are many common issues, there is quite a range of problems that can come up. If Vivien lives, it will truly be like caring for a long term infant,with all the joys and hardships that go along with it. An infant who at her highest mental capacity will be able to reach about 18 months and will have many health needs in addition to the normal caring for a baby. There is a lot of tweaking of medicines and figuring out what works best for each child. Some of them do not ever sleep through the night although some do. In all honesty, again sometimes the “work” of it still scares me, yet at the same time, because of seeing documentaries and hearing stories on broadcasts reading blog posts and pouring over facebook groups, I know that they bring so much life and joy to a family as well.

One of the blogs that has been especially meaningful to us has been “I Will Carry You” written by Alesia Yusoko about her little 2 year old Nora. We started following her life reading the daily posts and enjoying their love for her. It was easy to fall in love with her ourselves so it was difficult to watch the journey for her unfold in the last couple of weeks when she was admitted into the hospital with many complications and died a week ago on June 3rd. The day she died as they were waiting and praying, her mother wrote on her facebook page, “Pleeeaasee pray!!” and then “Things are very very serious. God has a plan here and we have to TRUST Him NO MATTER WHAT!!!!!!! He has a plan in all of the f%;king bulls@3t of this world. I TRUST IN HIM!!!!!!!!!!!!!” For some reason the angst, the intensity of the emotional turmoil that she was going through coupled with the absolute declaration of her trust that God was at work hit me in such a strong way and made me love her, and Nora so much. Seeing how she trusted God with the depths of her pain and knowing that she could come to him in the ugliness of the moment was so beautiful to me. I know that He is trustworthy in whatever comes along with Vivien.

We have also tried to parent our kids well. They have been asking lots of questions about what she will and will not be able to do if she lives. Some that we couldn't answer we were able to ask parents and it has been wonderful to be able to receive answers. We have shown them pictures and videos of kids diagnosed with t-18 as we wanted them to be prepared. They continue to process and grieve and ask questions.

A few weeks ago I was listening online a program and there was a baby crying in the background. Silas was in the kitchen and he asked me why the baby was crying and I said it was because she needed food or she might die and they were telling us on the program how we could help. He said “oh” and then went on with what he was doing, but a few moments later he appeared in front of me. I looked at his face and I could tell he was in deep distress. I thought it had to do with a little argument he’d had with Maggie earlier, but it wasn’t. I pulled him close and asked him what was wrong and as I did, he burst into tears and started sobbing, “I don’t want our baby to die.” I held him and prayed for him and with him and told him that God is in charge and that we can pray and ask Him to let her live. He settled down and was ok, but I know that it is affecting all of our children deeply.

Lucie has taken to greeting “Vivie” as well as me when I come in and patting my stomach. It’s funny how nicknames just sort of come out and Lucie and Maggie have both called her “Vivie” often. The other day Lucie asked me to come here. She said, “I want to tell Vivie something.” She had written her a little letter and drawn her a picture. I loved it.

Todd and I are continuing to process too. I know that sometimes when I am struggling my rather idolatrous default is thinking about vacations. I know that vacations aren’t bad in and of themselves and Todd and I even took a little getaway for an overnight at a hotel sans kids in Seattle a few weeks ago thanks to the Grandparents. We don’t know what the future holds and could be our last getaway for a long time. We walked around Pike Place, visited Storyville Coffee, enjoyed writing and relaxing and talking and eating by the waterfront. My “happy place” is dreaming of where I can go. I asked Todd, “What is your happy place, or your default when you want to feel better?” He grinned at me and I should have guessed. “Cleaning the garage,” he confessed. He has been out in the garage cleaning and building and trying to make things organized. This is a very practical “happy place” – much more so than mine. We both want to get our house very streamlined and organized before Vivien arrives. But Todd has always found relaxation in yard work, building and just manual labor of sorts. Needless to say, our garage has been getting quite spotless as of late.

In the meantime as we are learning and growing in love for Vivien, for this little girl we haven’t yet met, there is a part of me that knows the more I love, and the longer she lives, the harder it will be to let her go when the time comes, whether it is many years, or just a few days. We want her to stay with us and stabilize and be healthy, but at the same time the more we invest in her, I know the more we will love her and the more difficult it will be if and when she goes to heaven.

Rick Santorum ran for president in the last election. He has little girl named Bella with t-18, who we have also fallen in love with. He spoke about how in the first few months of Bella’s life, he was sort of the rock and the strong one in the family. While everyone else was emotionally falling apart he was ok. But he realized about 5 months into her life that he wasn’t letting himself fully love her, out of fear and belief that she would die. After this realization he chose to open up his heart to love her well. She turned 6 in May and in a recent radio interview I listened to, the love and joy that that little girl brings their family and the way that he and his wife Karen spoke of Bella is so beautiful.

The problem with “growing some love” is that as C.S. Lewis says – it is vulnerable. I know that this is true and I am trying to be willing to “go there” with Jesus in my love for Vivien. I will leave you with this quote from Lewis that has been one of my favorites for years, and is more meaningful now.

“There is no safe investment. To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket—safe, dark, motionless, airless—it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable” – To love at all is to be vulnerable.

Lord Jesus, let us be willing to go to that vulnerable place and love Vivien well. I know that despite the pain vulnerability brings; the love will be worth it.

Next….”Doctors, Nurses and Controversy – Oh My!”

Fairy Tales, Foolishness and a Sweet 2x4 – May 4

In the week following the diagnosis, we grieved, but also wanted to keep life fairly normal. Friday night I had promised to take Maggie, Lucie and a friend to see “Anne of Green Gables” the musical at a local church. My girls loved it, but it just felt strange to me. I knew several in the play, and I was sitting there watching it as if life was normal. But it wasn’t. It wasn’t normal and it wasn’t what I wanted it to be. It had changed so drastically in just a few days.

I felt like I’d had highs and lows. I had definite lows from news, but highs because I wasn’t crying my eyes out. Just the fact that I was doing ok, able to smile and attend the play and then go the next day to a baby shower, converse and smile and joke like a normal human being with friends about things other than my baby felt odd, but also like God’s grace. It was a high just to be able to do this without breaking down and I know that He was helping me.

Sunday however, was a low day for both Todd and me. Breaking the news to those we knew at church, explaining what T-18 meant and the outcome was difficult. So many lovingly cried with us and showed their concern and support, which caused us to cry. It was good to share, but still a very difficult day and after church, both Todd and I were feeling pretty low and very tired.

That afternoon, when Iva went down for her nap and the kids went outside, I sat down at the computer, telling myself that I should be journaling or maybe drafting the letter that we were going to send out to tell family and friends about Vivien, whom we couldn’t tell in person. But I was so tired I just wanted to watch a movie and a little guiltily turned on “Penelope” which I’d started earlier.

It’s funny how the Holy Spirit can use just about anything to speak to us. I wasn’t even looking for it, but as I started watching I began to wonder if it wasn’t an accident that I was watching this movie now. I don’t recommend very many movies and I’m not saying that this one was perfect, but Jesus definitely used it to speak to me. It’s a modern fairy tale of sorts; about an old blueblood family who has a curse that the next girl baby born will have a pig’s nose. The way for the curse to be broken is for her to be “loved by one of her own kind”. Yes, stellar plot line I know, but honestly, it’s a pretty cute movie despite the foolish sounding ridiculousness of the story.

When Penelope is born with a pig nose her mother absolutely freaks out. As she grows up, her mother keeps her hidden from the public out of fear of how others will see her daughter and tries to control everything in her life. When she reaches the age of marrying, her mother sets out to find another blue-blood suitor “of her own kind” to break the curse but every suitor who comes and sees Penelope ends up running away screaming and has to sign a non-disclosure form….

Penelope

I will spare you a more detailed plot, but as the movie went on, I couldn’t help thinking about my daughter who – if she lives – will be different. She will be sweet and wonderful but she will be different from other children she will look different and think different. In the end, Penelope gets frustrated with hiding from the world, declares her independence and eventually asks her mother to stop trying to control everything. (Plot spoiler here -) She finally declares, “I like myself the way I am,” and the curse is broken and her nose returns to normal. Her mother realizes that she could have loved her daughter well and broken the curse herself if she had not been so controlling and scared. She thought she was doing what was best, but it wasn’t.

As I watched I thought about our own little girl. I want to love her as Jesus has made her no matter what. I don’t want to foolishly try to control everything in my own strength, but I want to let the Holy Spirit lead me. I don’t want to be scared of what others’ perceptions are, or let my fears be my guide.

But there was one line where I felt like the Holy Spirit hit me upside the head with a sweet 2x4. Maybe that’s not the best way to say it, but it was a revelation from Him. Penelope and the man who truly loved her were sitting on a hillside and they had just finished telling some children the story of the nose and the curse and the result. One kid pipes up, “So what does it mean?” There are a couple of humorous (wrong) guesses given– “mothers are always wrong” and “rich people are stupid” but then a thoughtful little man says, “It’s not the power of the curse, it’s the power you give the curse.”

When he said those words, I burst into tears. Big fat sobbing tears. But happy tears because Jesus had spoken to me. Our little girl has T-18 because of the result of the curse - it’s true. Sin brought sickness into the world. God created us perfectly, but our sin has brought a curse. But because of Jesus – that curse is BROKEN. It has no power. We don’t need to give power to the curse of sin and sickness because of His REDEMPTION. At that moment the Holy Spirit didn’t necessarily give me a promise that Vivien would be completely physically healed, (although we are praying for this) but He did tell me to stop giving power to that curse. One day, Vivien will be completely healed. Maybe or maybe not in this world, but certainly in the next. I felt like He spoke to me to stop grieving and to start celebrating the life that is growing inside me. To not worry about how she looks, or her sickness or how she will be different, or her possible death but instead to celebrate her and celebrate redemption. I don’t need to give power to the curse. It really was then that God spoke to me to celebrate her life instead of mourning over her disease and possible death. We can take joy in every moment we have with her and we don’t have to live in despair.

Todd came up the stairs when he heard my sobs and looked at the screen (which had a little dwarf man on a lake in a rowboat – another part of the plot) and then looked back at me, very puzzled. Yes, God uses the “foolish things” to confound the wise. I could only blubber “God spoke to me” at first. They were truly happy tears. I didn’t feel like He was saying that I couldn’t or wouldn’t ever have times of mourning or grief. But I knew then and there that grief was not going to be our focus anymore. We were not going to give the curse any more power. We were going to celebrate her LIFE.

When I spoke these words to Todd and told him what I felt God was saying, he agreed. In fact, He felt like God had been speaking those same things to him, especially in the area of celebrating her life instead of looking at the situation in heaviness. The more we talked about it, the more joy we truly did feel in looking at her life this way. So much so that over the next few days as we talked about names, we made the decision to name her Vivien Grace. Vivien means ALIVE or LIFE! Grace is what Jesus has shown us in abundance and will continue to show us we know.

I love how the Holy Spirit doesn’t just speak to us, but he also confirms things through the greater family we have of community. One of my dearest friends from our community group texted me soon after this that she had something that she wanted to talk with me about. We tried to get together and it didn’t work out, but ended up talking on the phone later that week. She was so sweet. She hemmed and hawed a little bit and told me that she felt a little odd about saying this to us, but she felt like the Holy Spirit had asked her to tell us to not look at what was happening with sorrow, but instead to celebrate the life of our little girl. She said that it was hard to say because she felt like it would be insensitive, especially when she knew we had been grieving and struggling but she really believed the Holy Spirit wanted her to say it. I loved her courage in speaking what God asked her to speak, in a gentle loving way, despite the fact that it may not have seemed the most sensitive thing for her to say or do. Yet it was exactly what we needed to hear and what He had already spoken! It was a beautiful confirmation that we are to focus on redemption rather than the curse and joy rather than grief. Again this doesn’t mean that we can’t or won’t grieve at times (maybe some more than others) but grief is not the end and not the entire focus.

Don’t you love God’s command to “rejoice in all things” is not just a burden that He puts on our back? He doesn’t say, “I’m going to give you this hard thing – and you’d better have a good attitude about it…” Instead it is because He truly wants us to be filled with joy. He actually desires our happiness. I will be the first to say that this doesn’t automatically mean that we are taking things lightly or make everything suddenly rosy circumstantially. But joy is within our grasp, despite our circumstances. And I love Him for it.

Up Next… Growing Some Love

Word of God Speak – May 3

(Preface: I know this is a long post but bear with me. Quite a bit of it is Scripture and because of that, it has lengthened the post. But His Word is so GOOD that you have to read it.  Yes, I understand that the context of this was to Jerusalem and it's important not to read things into Scripture.  But I know that the Holy Spirit was speaking to me as I read, and I love His Words.)

“Word of God Speak” is one of Silas’s favorite songs. He asks for it over and over. It is a beautiful song, and it is true that God’s Word is living, active and pertinent to what we are going through. I really experienced this truth in the week following finding out the news that our baby was indeed diagnosed Trisomy-18.

One thing that I was amazed at was the ability to go on with life, to do normal things, to smile and even laugh at times. Going from how I felt a couple of weeks ago, when I literally had no idea how I was going to make it emotionally with the fear, anxiety and grief I was struggling with – to being able to function normally, and even rejoice in things – truly felt like a miracle from God. I had cried out to Jesus for help and He proved to be the comforter His Word says He is. This, in addition to the outpouring of support from friends and family was wonderful. Though we weren’t ready to put it on Facebook yet, we were willing to be honest with our close friends about what we were going through.

Both Todd and I were feeling like our marriage was stronger, like we were closer to one another and very comforted by each other. I felt like Todd had been especially gentle and that I had drawn a lot of comfort from him. But one morning woke up with the realization that I was really putting a whole lot of emphasis on the comfort that I was receiving from Todd. While there is nothing wrong with this and I am so grateful for loving husband, I felt like God whispered to me, “I want to be your Source of comfort.” I felt like He was reminding me that He is the one I need to run to, even more than my husband.

I was reading my Bible through, a bit each day, and though Todd had gotten some beautiful Scripture, there wasn’t anything that had stood out to me up to this point. But when Jesus spoke to me that morning, I went to my phone (yes…I read my Bible on my phone) with different eyes. I basically said to Jesus, “You say you want to comfort me. Ok – I’m ready and I’m asking for it.” It a tiny bit of a challenge to Him as well as an open heart to what He had to say through His word that morning. I was asking Him to speak to me, not just going through the motions of reading.

I happened to be reading in Isaiah and He blew me away. The first thing I read was this:
Is 44:1-8, But now hear, O Jacob my servant,
Israel whom I have chosen!
2 Thus says the Lord who made you,
who formed you from the womb and will help you:
Fear not, O Jacob my servant,
Jeshurun whom I have chosen.
3 For I will pour water on the thirsty land,
and streams on the dry ground;
I will pour my Spirit upon your offspring,
and my blessing on your descendants.
4 They shall spring up among the grass
like willows by flowing streams.
5 This one will say, ‘I am the Lord's’,
another will call on the name of Jacob,
and another will write on his hand, ‘The Lord's’,
and name himself by the name of Israel.” Thus says the Lord, the King of Israel
and his Redeemer, the Lord of hosts:
“I am the first and I am the last;
besides me there is no god.
7 Who is like me? Let him proclaim it.[a]
Let him declare and set it before me,
since I appointed an ancient people.
Let them declare what is to come, and what will happen.
8 Fear not, nor be afraid;
have I not told you from of old and declared it?
And you are my witnesses!
Is there a God besides me?
There is no Rock; I know not any.”
And then again verse 24 –
Thus says the Lord, your Redeemer,
who formed you from the womb
“I am the Lord, who made all things,
who alone stretched out the heavens,
who spread out the earth by myself

I loved that the first thing I read had to do with God, forming us in the womb. I felt like He was speaking to me that He “formed” her and that this is not a mistake. I love how He spoke that he will “pour water on a thirsty land”. When Todd and I married, God spoke to us through the analogy of entering the land of marriage. We saw our marriage and family as His. He was doing it again. I loved how He spoke about our children being “the Lord’s” and saying they are “HIS”! The most important thing to me for my children is that they are His. More important than their health, more important than whether Vivien has t-18. Vivien is His girl. I love how he spoke not to “be afraid” and then ended with truth about His character and his strength and his faithfulness.

The next verses that stood out to me were these:
Is 45:9-13, 25 - Woe to him who strives with him who formed him,
a pot among earthen pots!
Does the clay say to him who forms it, ‘What are you making?’
or ‘Your work has no handles’?
10 Woe to him who says to a father, ‘What are you begetting?’
or to a woman, ‘With what are you in labour?’”
11 Thus says the Lord,
the Holy One of Israel, and the one who formed him:
“Ask me of things to come;
will you command me concerning my children and the work of my hands?[b]
12 I made the earth
and created man on it;
it was my hands that stretched out the heavens,
and I commanded all their host.
13 I have stirred him up in righteousness,
and I will make all his ways level;
he shall build my city
and set my exiles free,
not for price or reward,”
says the Lord of hosts.
25 In the Lord all the offspring of Israel
shall be justified and shall glory.”

I felt like He was saying to me that I don’t need to look at Vivien and worry that she is different. I don’t need to say to Him, “What are you making? Or “She has no handles.” - She is not like other babies but who am I to say “what am I begetting or with what am I in labor?” He has formed her. She is HIS and is the “work of His hands”. He will give her joy and will set her “free”, however He chooses. She will be beautiful. She will be “justified” because she is His. How living and active and precise His Word is.

The next part was this:
Is 46:3-4 “Listen to me, O house of Jacob,
all the remnant of the house of Israel,
who have been borne by me from before your birth,
carried from the womb;
4 even to your old age I am he,
and to grey hairs I will carry you.
I have made, and I will bear;
I will carry and will save.

As I said before, the selfish part of me has struggled with the idea that I am going through this pregnancy, “carrying” Vivien in my womb and going through child “bearing” with the idea that she may not possibly live at the end or very long. I have asked Him – if this is true, why didn't You just take her sooner. But in reading this, I felt like He spoke to me that He is going to “carry” her with me. He made her and He will “bear” her with me and give me strength for labor and will “save”. This is not just my effort, but His and He will give me strength. I know without a shadow of a doubt that despite my emotions, it will be absolutely worth it, no matter how long she lives.

Next this stood out:
Is 48:5-7 I declared them to you from of old,
before they came to pass I announced them to you,
lest you should say, ‘My idol did them,
my carved image and my metal image commanded them.’
6 “You have heard; now see all this;
and will you not declare it?
From this time forth I announce to you new things,
hidden things that you have not known.
7 They are created now, not long ago;
before today you have never heard of them,
lest you should say, ‘Behold, I knew them.

When we were thinking about conceiving, I wanted another baby so badly. I loved my beautiful children and I’d look at them and wish for more. Vivien would not look like they would and she would not be like them. She was not what I was expecting. While I absolutely believe that it was God’s will for us to conceive Vivien, I could see how it would be easy for me to make an “idol” of my beautiful, healthy children. I felt like He was saying to me that He is doing a “new thing” in me. I’d “never heard” of t-18 before this. I know that I will learn to love with a capacity that I’ve never had before. I knew that He created her now for many purposes, including showing His power in me as I am incapable of loving like I should without His grace. I feel like He is already opening my heart to her, giving me love that I didn’t know that I had.

Lastly, the next day He also gave me this:
Is 66:8b-13  For as soon as Zion was in labour
she brought forth her children.
9 Shall I bring to the point of birth and not cause to bring forth?”
says the Lord;
“shall I, who cause to bring forth, shut the womb?”
says your God.
10 “Rejoice with Jerusalem, and be glad for her,
all you who love her;
rejoice with her in joy,
all you who mourn over her;
11 that you may nurse and be satisfied
from her consoling breast;
that you may drink deeply with delight
from her glorious abundance.”[a]
12 For thus says the Lord:
“Behold, I will extend peace to her like a river,
and the glory of the nations like an overflowing stream;
and you shall nurse, you shall be carried upon her hip,
and bounced upon her knees.
13 As one whom his mother comforts,
so I will comfort you;
you shall be comforted in Jerusalem.

How beautiful that Jesus is trustworthy for whatever is to come? As I struggle with anxiety about “labor” and about what He may “bring forth” from my womb, I can “rejoice” in Vivien. I can “be glad for her” life, however long it may be. It gives me hope in the possibility that she may even live longer to be nursed and “bounced on the knees”. Either way, she will be loved. Even though I have been “mourning over” her, I can still rejoice. I love how God says that he will “extend peace like a river” and that God “comforts us” and that we will be comforted. He has already shown this in our lives and I know that He will continue to do so.

We weren’t quite ready to share the news on Facebook yet, but my heart wanted to share what Jesus was speaking to me. In addition to this, I have had several friends and relatives lately (actually what seems like an unusually large amount) who have had babies miscarry, be stillborn or die as young children. I wanted others to hear God’s comfort. So I copied the last Scripture about comfort that Jesus gave me and tagged them with this post. “So thankful for Jesus's comfort. Thinking of LIFE and babies alive on earth and those in heaven. Thinking of my own baby who is alive now, and several friends whose babies or young children have passed away recently. So glad for Jesus's comfort and the truth that babies are ALIVE in Him because He opened Heaven for us.”

We continue to receive life from Jesus and His Word that is so incredibly pertinent to what we are going through. It is truly LIVING and active.

Next…. “Fairy Tales, Foolishness and a Sweet 2x4” – May 4