5 years later

Tomorrow it will have been five years since we passed Elizabeth to Jesus. These posts were originally a series of emails to our close friends and family, but ended up in blog form when it seemed easier than trying to add people to the mailing list. I didn't realize that random people searching for "trisomy 13" were still stumbling on them, and felt like I wanted to provide an update to  anyone who isn't directly connected to us. Also, there are a few things I've learned along the way that might come in handy to you who are searching, so I'd love to share them.

First of all, our family has expanded by one more. We welcomed another daughter, Paige Elizabeth exactly two years and three days after her sister. It was very scary for us to even try to get pregnant again, and doubly hard to have such a close due date as before. It was hard. Really hard. It's really awkward to be excited for one child while grieving another. And I felt so resentful having to go through the process all over again. At the end of my pregnancy with Paige, I remember thinking it might be like getting married again after your first spouse dies. Everyone is thrilled about it and you're just thinking "I wouldn't be doing this if they were still here." Clumsily, we made it through a lot of other people's excitement and finally delivered a healthy girl. Over the course of those two years, we have met parents in this special club and heard of so many stories of lost babies. I felt like I was carrying all of them with me into the delivery room that day.

Something happened to me when we brought Paige home from the hospital. It was like instant healing. I had done a lot of healthy grief work and was doing okay by that time, but I describe it as a light switch being turned on. I'm not sure if that's common, but I felt like I saw "redemption on this side of heaven" as JJ Heller would put it. I was worried that having another baby would replace Elizabeth, but it's been the opposite. Having another daughter has enhanced my love for my children. When you've been given a second chance at loving, you don't take it for granted. You hear people say, "hug your kids extra tonight" when there's been a tragedy. I feel like I do that every night.

I love a good list, so here's one I've compiled for anyone facing an "incompatible with life" diagnosis and are choosing to carry to term.

-read the book I Will Carry You, by Angie Smith.
-contact a photographer from "Now I Lay Me Down to Sleep" and set it up for them to be there at or after the birth. Also ask if they also offer maternity photo sessions.
-reach out to anyone in your area who has dealt with infant loss.
-say yes to any help offered within your comfort level. Remember people want to show their love for you by helping, so let them love you this way.
-find a therapist and establish a relationship with them as soon as you can. They can help guide you through relational boundaries and the grief process.
-regularly meet with people who have dealt with or are in the midst of any type of significant loss.
-after delivery, rent a breastpump from the hospital and try to pump for a month if you can handle it.. People sometimes donate their milk, but you don't have to be a saint. I decided to pump for faster uterine constriction and just thought it would be good for my hormone balance. When I had my next baby, the lactation nurse said that probably helped my body to produce well again.
-during the months and years after delivery, you might want to visit the website "A Glow in the Woods". Not recommended for anyone else, just us in the club.

If you're a friend or family member of a parent who has lost a baby,  here's one for you:

-if you offer to help, don't just say "let me know if I can help". Instead, give a few options of things you'd be willing to help with. "I could either mow your lawn, bring a meal or watch your kids this week. What would be most helpful?"
-after delivery, bring a meal and also offer to shop for groceries. It's not easy going out in public still looking pregnant and having people ask about it.
-at least send a card. I don't know any parent who hasn't kept every card given to them.
-don't be afraid to ask about their baby. You're not going to suddenly remind them of what happened.
-be consistent with visiting if you're a close friend, and let hard visits roll off your back. Your friend is just going to be weird for a while.
-expect them to be weird for a long time. The grief process is different for everyone, but lasts an average of two years when dealt with healthfully.
-don't be offended if they distance themselves from you if you have children the same age. Maybe get together with them without your kids.

I'm not quite sure how to wrap this up, but I'll just say this. We live in an imperfect, fallen world where really bad things happen. Sometimes your baby dies. And there's not (to my understanding) a big reason for it happening other than we live on this side of heaven. God doesn't not "give you more than you can handle". That's not ever quoted in the right context anyway,  so just let those comments go. But we are promised that God will walk with us in these times, and most anyone can look back and see that was the case. God isn't a crutch, He's more like a medi-vac unit or life support. Just keep
that in mind and keep walking.

And one more thing.

Thank you to everyone who have brought meals, emailed or sent cards of support so far. Especially those who have continued to pray for our family. We have been asked by many what our memorial plans are and if there's a way to support us by donation. We are not choosing to have a formal memorial service or burial for Elizabeth. Instead, Jeremy and I plan to spread her ashes in a special place sometime this summer. Donations made in her name to Care Net in Kenmore would mean a lot to us if you wish to memorialize her life in that way. It's a non-profit organization that supports women who choose life for their unborn children despite their circumstances.  The address is: 6524 NE 181st St, Suite 9 (PO Box 82828) Kenmore, Wa 98028. You can find more information on their website: carenetps.org.

That...was awesome.

Hi All, Josey here letting you know I haven't fallen off the deep end or anything! Just been taking time to rest and reflect on one of the most incredible experiences of my life. The words are hard to come by as I am taken aback by raw emotion, but I'll try to fill you in. Have you ever seen a toddler clinging her dad's hand as he navigates her through something scary? She has trust that he knows the way to go and will protect her but she still trembles a bit. That was, and still is me. I had the promise of God's mercy tucked deep inside my heart and knew he would not leave my side. I was clinging to the fact that His timing is perfect and that He had a plan for Elizabeth's life even before she was conceived. Still, I trembled a bit. I walked into the hospital praying "You've got me, right?" He sure did. 

After a birth that was so incredibly well-timed and with the help of the nurses that couldn't have been a better fit for our situation, our girl was born! She brought a peace with her that was so heavy I was glad to already be in bed. After barely moving her leg to let me know she was alive, she looked like she was sleeping the whole time. Her heartbeat was rapidly decreasing. We knew that she was going to leave us quickly so Jeremy and I kind of played "hot potato" to make sure we both got to hold her. The nurse checked her heartbeat a few times to let us know where it was at. The last check though, she didn't have to tell us. Even though she hadn't made a sound or movement, we could tell her spirit had left. It wasn't sad though because I knew exactly where it had gone to. Since we didn't know what to expect, Jeremy and I had talked out all the different scenarios beforehand and I can say that we had the best one. We didn't have to see her struggle or gasp, and we didn't have to spend a long time wondering how many hours we would have left. God has been known to have perfect timing and this was a prime example.

It took me a while to pinpoint a certain word that encapsulated what I was, and still am feeling the most. It might not make sense, but I found it. Privileged. I feel so honored to be able to be Elizabeth's voice and get to hear how her life was impacted by so many. What makes me well up with tears is not as much sadness, or even joy. It's the weight of God's mercy that not only has completely covered me, but that I've had a front row seat as it has touched others. Many of you have written to me saying we have been in your thoughts and prayers. Lots of you have said how much Elizabeth's story has moved you. I wish I could answer every email and text. If I haven't gotten back to you, please know that those words have fueled my spirit and helped me so significantly. I've read all of them and am so appreciative of those who have reached out to us. We still covet your prayers. I have heard from others in this special club we've now joined that hard days are to come. Right now we're just awestruck at what we've seen and heard. Please don't feel sorry for us at this time! We've never been through anything so sacred and have never felt closer to the Lord or each other than right now. Rejoice with us as we get to not only reflect on God's mercy but envision our precious daughter at the feet of Jesus! Yes, we feel like she's missing...but she most certainly is not lost.

One thing I am dreading is going out into the real world without her. I'm worried that people won't know what to say to me so they won't say anything. Will you help me with this? Eggshells are not what I'm used to walking on and I don't want you to feel like you're on them around me. If you see me please say something! You don't have to worry about it being the right thing to say because I probably won't say the right thing back! Jeremy's not as sensitive to this kind of thing, but I really am. I walked the hospital floors thinking "Do they know what's going on?" It's so awkward and I feel vulnerable wondering if it'll be brought up or not. We don't mind talking about it at all, and will answer any question, even if it seems insensitive. Don't think for a minute that addressing our loss will suddenly make us think about it. We're already thinking about it all the time. Even just saying "I heard about Elizabeth" or "I've read your emails" will take the pressure off me. Don't worry about making me cry in front of you. I deal with this little thing called pride. Have you heard of it? If I cried in public the best response to that would be a high five! 

I'm going to get back to resting now. Thank you for walking with us, even if we haven't met in person. Thank you for letting us share our adventure with you. I'll make sure to update again as we continue!

Josey 

P.S. This photo was taken right after Elizabeth was born. She's alive, just still really messy! We had beautiful pictures taken after she had passed that once we get them back will share with whoever would be interested. I want to make sure to be sensitive to you if you're not comfortable so I won't post them on the blog.  

Elizabeth has gone HOME!

Hey everyone Jeremy here! I'm taking over for Josey who is completely exhausted after 1 and a half hours of sleep last night, and delivering the most beautiful baby girl I have ever seen!!! Elizabeth Joan Horst was born 3/5/2012 @ 3:56pm, 4lbs10oz and 18.39inches. She left to be with Jesus about 20 minutes later, she had a very week heartbeat of about 40bpm and did not have much energy to move or open her eyes after being born. Josey, I have to say is what most nurses would call a perfect baby delivering machine! (don't tell her I said that) You would think that she has had 10 kids or something, actual delivery time of about 30 min until Elizabeth was born. And I have proof!

The two lines at the right represent dilation and baby popping out, it was crazy!!! This all was God's timing, he created an almost stress free environment for our Elizabeth to enter this world so we could hold her while she was still alive, and he granted our prayer!!!

I will let Josey fill all of you in on the details, all I can say about my experience is that at the age of 15 if someone had told me the journey that my life would have by the age of 31, I would have laughed in your face. But my faith in God has brought me to a place in my life that I could have never imagined! I also cried like a baby until she was taken out of the room, but my tears (yes held up this whole time) were the most joyous tears I have ever cried in my entire life. Knowing that my baby girl is in heaven and I will someday join her and tell her what a life changing experience she has created for me and many!!!!




-Jeremy

E-Day!

Hi Everyone!

Just a quick note to let you know all is well so far! You must be fulfilling my request for prayers of an easy delivery because it's been progressing and with little pain. Our kiddo is still kicking and handling it fine also. We have a fantastic nurse too! Thanks for all your thoughts and prayers. I'll get back to giving birth now :) 

Josey

Getting close...

"Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me." Psalm 23:4

I've always imagined those words being clung to by people who are doing the actual dying, but as we head towards Elizabeth's birthday I feel they are near to my heart. We have chosen to induce labor a few weeks early now that she's considered "full-term" and will go in Sunday night to start the process. There are two reasons for this: first, my body is exhausted from combating preterm labor for the last two months; second, the longer we wait, the less of a chance we'll have to see her alive. Babies with her genetic disease often don't make it through the labor process and we want to make it easier on both me and her. I feel the valley start to surround us as the days click by. The good thing is that although some pressure and anxiety have kicked in a little, we're not afraid. We have a Shepherd who has made it clear in the last months that He is walking beside us. If you've had the chance to talk to either of us lately, you'd probably agree there is so much more to this story. As I start to walk through this valley I am comforted by knowing He's not going to leave. Instead of fear, there is an unshakable feeling that we are about to walk into something sacred. 

We have had many people express their support in prayer and we ask you to continue throughout the week. There is so much to pray for! Jeremy is working hard to get everything ready for his absence at work, and I'm struggling to stay present while my mind travels into next week. Please pray for an easy delivery and favor regarding Elizabeth's birth. It's okay if we don't have time with her on this earth, we're at peace knowing that the best scenario will be the one that happens. Please continue to lift up the hospital staff, especially our doctor during our stay.

The whole thing feels a bit bittersweet. In a lot of ways sad, but we are so excited to see her! We've talked a lot lately about how different of a pregnancy this has been for us to go through. Physically the same (especially the preterm labor stuff) but emotionally so different. When we  were expecting Seth we were so guarded that we couldn't even use his name. We weren't able to hold him until he was six days old, and weren't allowed to be alone with him until we brought him home a month later. This time around we have loved our Elizabeth without limits! The thought of holding her right away might seem like no big deal to other parents, but it is what we look forward to the most. It feels like what was lacking last time will be filled up, and we eagerly await those precious moments where it's just us and her. 

We will update as soon as we're ready to. Thank you all so much for your support, physically and prayerfully. It has helped tremendously to know we have a crowd of people who have walked beside us thus far. With love, Jeremy and Josey

January 23, 2012

Hello Everyone, Josey here to talk to you about what's been going on around here lately...

First of all, the news is not really news as Elizabeth is progressing normally and still her very active self! I've heard that babies with her condition are often small, but she doesn't seem to be. Considering Jeremy's 6'6" stature and the fact that I had a practically normal sized preemie last time, I guess I'm not surprised! We still love her deeply. Seth asks to talk to her all the time and we let him. When I read him stories sometimes he asks her, "Isn't this fun? Like this one Liv-beff?"  

A few weeks ago I started to feel unnaturally drained whenever I did, well, anything! Sitting down to dinner was like having the life sucked right out of me. I was on bed rest with Seth for 12 weeks due to low fluids and remember feeling the same way around this time of that pregnancy. I started showing signs of preterm labor New Year's Eve and since we had a babysitter that night (thanks Deb and Jen!) we swung by the hospital to get checked out. Normally a mom should call if she experiences more than four contractions per hour. When I was hooked up to the machine it showed a contraction every five minutes. No wonder I was so tired! The doctor says my body is built a little differently, something about a pressed nerve when sitting or standing upright along with low blood pressure. I am just convinced that around the third trimester it finally realizes it's pregnant and goes into shock! Either way, I have begun to "take it easy".

Those of you who know me, especially the friends who see me during day know that taking it easy isn't something that comes naturally to me. We're usually only home during meals and nap time, and get antsy when there are lulls to the day. Seth often asks upon waking "Where we going today, Mom?" It's been a challenge (I cried at the Y when I suspended my membership), but so far I've managed to do it. Thank you to all my momma friends who've brought their kids to us lately, it's been appreciated! It's a weird concept, taking strides to care for a child who has a fatal diagnosis. Jeremy recently exclaimed "Jos! Don't slip on that ice and fall on your belly!" Would it matter that much if I did? Probably not, but there's an instinct given to parents to protect their children that doesn't go away, despite the circumstances. We feel that while Elizabeth is with us, we need to take care of her the best we can. So here I sit... 

Shortly after I started to slow down, I started to get frustrated.  I kept hearing words go through my head, like "ineffective" and "wasteful". I know those weren't words from the Lord, but it was hard not to pay attention to them. I wouldn't consider myself a perfectionist (and if you've seen my cupboards and drawers you'd agree) but I've always tried my hardest to be a good steward of the things I've been given. I was frustrated not to able to take care of my house and family the way I wanted to. I felt upset to have friends and family that could use my help and be unable to offer it. I didn't picture my last months with Elizabeth being miserable and felt like it's not a fitting part of her story. The more I succumbed to those thoughts, the more my body hurt. I came down with a nasty cold. Then a pulled muscle in my back. I started to feel like my body was being attacked and as the snow started to fall, my spirit hit an all-time low. Jeremy came home early last Monday and took Seth so I could rest. I didn't want to rest. I wanted to yell at the Lord about how He was messing everything up. I'm so glad that God is okay with us being angry with Him. Even when we're so drained emotionally that we can't bring ourselves to pray, it's still prayer as long as we're looking in His direction. The more I yelled, the more I realized that not only my relationships are a gift, but my ability to maintain them are as well. I'm only as "effective" as He allows me to be.

Jeremy proposed to me on April 3rd, 2004. It was something that I knew was coming because he had already taken me to look at rings, but I didn't have any idea how or when he would do it. That drove me crazy! I love surprises, just not when I know they're coming. That weekend we went to Orcas Island where we had met during the summer of our Senior year of high school. we had visited several times since then and it was always a special place for us. I remember thinking, "This is it, I can't believe how fitting it would be to happen here." I waited. We went to Mt. Constitution to look at the view...nothing. Later we watched the sunset on the water listening to my favorite CD...nothing. As the "missed opportunities" kept stacking up I started to doubt that he knew me at all! I was convinced that I was destined to a public restaurant proposal that was not my idea of a good engagement story. Getting ready to leave the island, we missed the ferry and it was going to be a while until the next one, so Jeremy suggested we grab a sack lunch and hike in an area we hadn't been to before. I was so irritated I didn't realize that he had missed the ferry on purpose. We hiked to a secluded beach where he tried to get me to look for shells on the beach. Usually I love beach combing but didn't feel all that into it. He said, "Hey look at that one over there!" It was a pretty shell that stood out but I was stubborn and told him to check it out himself. His eyes twinkled as he picked it up and cracked it open to reveal an even prettier ring! It was definitely a happy moment, but bittersweet because I realized how much I had missed by looking too far forward. Of course Jeremy knew me! He knew how much I loved to hike, and that beaches are some of my favorite places. He researched the spot to make sure it wasn't often traveled so we could have a private moment. He cared for me and I had little faith in his ability to at all. 

How much more does God know me? How quickly my faith in His ability dwindles! I often get caught up in maintaining my experiences and forget Who gives me the ability to have them in the first place! The fact is, I don't know the details of Elizabeth's birth, but I want a good story to tell. I want her life to be a blessing to others. I'm worried that little will come of this and I won't have anything exciting to testify about. I keep forgetting that He not only knows her already, but He knows the whole story. And He doesn't need me to represent Him either. I won't be able to see the effect Elizabeth has had on my life, and others' until I'm in Heaven. All I'm called to do is invest in the things I'm able to, and right now I'm supposed  to sit still and let God take control of the situation. He doesn't want me to look so far forward that I miss the adventure! Within minutes of surrendering everything that I thought was my identity back to Him I felt relief on my body. It took a lot to finally hear the right voice, but when I listened it said, "Stop. Rest. Let me take this as you watch." 

Tomorrow I will turn 32. It's an age that for some reason I've been looking forward to being for a long time. I always wondered where I would be in my life at that year. Isn't that a little funny? Although I have a feeling that "where I will be" will depend on the season, even the day or minute, It will be the year that I hold my daughter. And hopefully the one that I finally learn how to rest. 

"Be still and know that I am God" Psalm 46:10

Josey