Dear moms of babies in Heaven......

Dear moms of babies in Heaven,

First off I know you never expected to be here. You never thought it would happen to you. Neither did I. It’s messy and ugly, but we’re here, and we are not alone. I want to share with you some things that I have figured out in the 6 years since my first miscarriage, 5 years since my son died at 1 week old, and 2 years since our last son was still born at 17 weeks. There are things that no one tells you, and things you think that you wonder if you are normal. These are just my experiences. Everyone is different in how they process things so don’t feel like if something doesn’t apply to you you are wrong. 

That brings us to the first point. This will probably be the longest one because I feel there is so much to say in this category. 1. Everyone grieves differently. Your experience, your loss, your feelings are all your own. It is ok for you to go through things differently than someone else. Often times family members don’t understand this. Just remember they don’t know what you are going through. They have no way to imagine or comprehend how you feel. Even your own husband, who has been through the same thing, processes it different. Give them some grace and don’t expect them to understand. Sometimes people will say comments about how you need to move on, or you aren’t “getting over it” soon enough. Just put those remarks right out of your head. Know that they don’t get it. They can’t possibly. Don’t expect them to. Just remind them that you are still grieving. Your husband probably won’t grieve the same way you do. It is harder for men to show emotion sometimes. For a lot of them, they want to protect you. They want to be strong for you. They think if they break down, then you will fall apart. They often can’t talk about your child the same way you can, or at all. I am much more open and talk about our sons than my husband did or does. And that is ok. It has taken me a long time to get to where I am. I didn’t want to talk about it at first. The last one is still harder for me to talk about than Eli. I knew Eli. I see the good that came from his life. I see how our lives changed because of him. I don’t have that for Luke. There isn’t any answer or explanation. I don’t understand it. 

Which brings me to point 2. Understand that sometimes things DON’T happen for a reason!  This is a tough one, because so many people say, “everything happens for a reason”. I have come to understand that I disagree with that statement. That’s a hard place to come to, but hear me out. God can use any situation for good. Even terrible, tragic ones. And yes I believe God allows bad things to happen in the world. Maybe He even causes some of them for a better reason, or to lead us somewhere good. I don’t know where the line is there. BUT the pain and the bad in this world is a result of living in a sinful world. God doesn’t want babies to die. It was never his plan. In the garden of Eden choices were made that resulted in consequences that still affect us today. When we chose to turn away from God and take our own road, we went to place God never intended. So sometimes things happen because this world is broken and that’s it. God cares about us, He loves us, and He hurts with us. God is not insensitive to our pain because He knows one day it will be over when we get to Heaven. Jesus even cried when His friend died, knowing that He would raise Lazarus from the dead! If you want to read more on this subject I recommend this article.

3. God WILL give you more than you can handle. This is also one of those sayings people say, meaning well. It is simply not true. First I will give you the Biblical basis in which this saying comes from. 1 Corinthians 10:13 “No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.”

This verse is talking about temptation. He won’t give us more temptation than we can bear. Which means we will never be tempted to sin, beyond what we can overcome. This does not mean pain or trials. In fact I think God does let more than we can bear on our own happen to us. This is how we know we need Him. We we face something that we can’t possibly do or overcome in our own strength, those are the times He carries us. That is when we know we need Him. This was never more real to me than when Eli died. I honestly have never felt the closeness of Him like I did then. He carried me through the absolute worst and most difficult days of my life. He gave me the strength to go on and get up each day, even when I didn’t have the ability to myself. I don’t think He thought I could handle my son’s death. There is a great article on this idea here.

4. Time doesn’t HEAL, but it helps. There is no magical number of days, months, or years that  will make everything ok. Time is a constant reminder of dates and ages and things that your child is missing. Whether it’s birthdays, holidays, other kids starting school, graduation, and many others, you will be constantly reminded of the life that you didn’t get to have with your child. Some of these times you dread and you expect like birthdays, but other times they sneak up on you. Something might remind you of your child that you didn’t expect and you are flooded with emotion. Time doesn’t change that. What time does is help those emotions to change from extreme sorrow and sadness to sometimes thankfulness for their life, or a fondness of a memory you had with them. If you had an early miscarriage and you didn’t get to make those memories, I am so sorry that you don’t have those to hold on to. I had those also. I didn’t get to hold or know them, but I do have a hope of that one day. I am confident that the Lord knows them. I am comforted by the fact that He knows exactly who they are, and that one day I will be with them forever in Heaven. I wrote more about time in this blog post a few years ago. 

5. Everyone else will go back to normal before you do. I have very distinct memories of those around me laughing and me thinking “how can they laugh, don’t they know what happened, don’t they care?”. The first few weeks people surround you and it’s easier, but eventually they go home, they go back to work, they seem to resume normal life, and you are there, stuck in the place that doesn’t feel right. That place is normal for those of us that have been through this loss. You have to realize that that place, the place without your child, is the new normal. You won’t ever feel the way you did before. You know know grief in a deep and intimate way, and you can’t ever forget it. It doesn’t mean that one day you won’t adjust to your new normal. You will get up, you will go on, but you don’t ever really “move on”. Your child is forever a part of you. Back to number one, just give those around you grace, they don’t understand.  

6. Keep their memory alive however you can. This one is huge. It is so important. I can’t tell you how many people I have talked to that regret not making memories. At the time you don’t think you want to, but do it. Listen to those around you. Let them help you and encourage you. It might be taking pictures if it’s possible, saving things that belonged to them, or writing down things you remember. It’s why I do what I do with photography. I wish I had more pictures of Eli. I wish I had spent more time with him making memories, after he passed away. It seems weird to those around us. It seems morbid even. But it’s so worth it. Sometimes it’s all you have left of your child and those things are priceless. It is hard. When he died, all I wanted to do was get it over with  and leave. I regret that I didn’t spend more time with him, and let our family spend more time with him. We had to make the best choice for us at the time. Don’t beat yourself up if you didn’t get a chance to do these things, just hang on to what you have. I am do thankful for the staff at Kosair. They took some hair before his surgery, they did hand prints, feet prints, and even made a mold of his hands. These are things I couldn’t look at for a long time, but now I am so glad I have them.  Another part of this is talking about your child. Don’t be afraid to say their name, just because it makes others uncomfortable. They are part of your story. You have something to share, to help someone else possibly. I learned that if I seemed comfortable talking about it to others then they were more wiling to talk about them also. Every time someone asks me how many kids I have, I have an opportunity to minister to them. I can tell them a small part of my story and how far God has brought me. That’s not easy and it took me a while to get there, but now I can say I have 5 children, 4 sons, and only 2 living. Now be prepared to get the “pitiful eyes” as I call it, but it’s worth it to help someone else know that they can survive whatever they are going through if they lean on God. We also celebrate Eli’s life and we have a cake every year on his birthday. It helps us all to remember him, and to be thankful for what he did for our lives. It’s comforting to talk about him and remember him. 

Ok, this post has gotten very lengthy already, so I will wrap it up with this. Do the best you can, don’t beat yourself up for the choices you made while grieving, rely on God for strength and turn your loss into something that might help someone else. I know where you are at, it’s a very tough road, but with God’s help you can make it. Take comfort in know that the One who made your child is holding them, He loves them, and you. Read Psalm 139. God gave me that chapter of His Word when I needed it so badly. I am praying for you. Let me know if I can help you on your journey in any way. I would love to answer ANY questions you have.

“You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.” Psalm 139:16

Helping Those Who Have Experienced Loss

This month as you may or may not know is Pregnancy and Infant Loss awareness month. I am honoring some of the children I have photographed throughout the month. I am also posting some thoughts I have about loss. 1 in 4 women have experienced a child loss. So chances are you know someone who has. Whether it was a miscarriage, still birth or loss of an infant, it is still someone's child.

I am often asked how to help someone who has lost a child. Here are some things that I have come up with through my own experience and helping others through theirs.

First, everyone's experience is different. Something that helps one person may not help another. So not all of these things apply to everyone. Take the time to assess where your loved one is in the grieving process.

1. Just be there. Sometimes saying nothing is better than saying something that you think might help but really hurts (we will address that more in point 2). This may include just a hug,  just listening if they want to talk, reminding them that you are praying for them. Often times people instinctively shy away from someone who has lost a child especially, because it's hard to talk about, it's uncomfortable. Here's the deal, I realize that it's uncomfortable, it's taboo, it's not at all fun; however don't compound the problem by making them feel isolated. It will make them feel so much better if you still include them in things, don't be afraid to have a cup of coffee and just let them tell you how they are feeling. You don't have to have all the answers, just be there.

2. Think before you speak. There are very few words you can say that are helpful. More often than not, well meaning people say things that are not at all helpful. In fact some of them sting very badly. It is always better to hug and say nothing than it is to say something potentially hurtful. Here are just a few things that are commonly said, that were said to me, that are hurtful.
-"God must have need him/her up there." No, just no. God didn't NEED my babies. He is God for crying out loud. Heaven is a place where those who follow Jesus get to spend eternity. This includes babies. I am thankful that they are in fact in Heaven, but saying God just needed them there isn't helpful.
-"It was God's will for your child to die." First off, let's not pretend to know the will of God. Sometimes He lets us in on His will for our life, but I don't think God told you His will for my baby. Also I don't think it is in God's will for children to die. I think we live in a very fallen and sinful world. It is damaged. There are consequences to that, in this life. God can take any situation and bring good from it, but was this rotten world where babies die His plan, no.
-"You are still young, you will have more children." Unless you can see the future, you don't know if someone will have more children. You don't know the infertility or the struggles they may have had just to have this one. Also, the fact that you can have "more" doesn't take away the loss or the hole that is left by the one you lost.
-"You child is an angel now." This one isn't so much hurtful as in is just wrong. Deceased children (and adults for that matter) don't turn into angels. The Bible lists very specific jobs for angels and what they were created to do. People don't turn into them, they are 2 separate beings. Sometimes parents call children their angels as a sort of "pet name" I think this is different than saying they turned into an angel.
-"Your child is watching over you, or your child wouldn't want you to be sad." I don't think our time in Heaven will be spent watching the horrors of earth. I could be wrong, but it's just my opinion.
-"I know how you feel, I've been there, I know what you're going through." Unless you have lost a child, don't say you know how they feel. Your friend's story, losing your pet, or anything else you might be tempted to compare losing a child to, isn't the same. It isn't helpful. Unless you have actually been there you can't imagine the pain.

3. Remember and acknowledge their child every chance you get. I can't tell you how happy it makes me when someone says my child's name. When they remember it's his birthday, or mention him it makes me feel like they really care. If you skip over the child's birthday, or expect the parent to be ok on that day and ask them to do something, it seems as if you don't care. Like you are saying "well you should be fine by now to go out to eat or hang out on this day". Also if you take the time to talk about them the same way you would their living children, or other children it will mean so much. There are so many great memorial gifts you can give to remind them of their child and show you care. If you google baby loss memorial gifts you can find so many great gifts. These small tokens are great treasures to bereaved parent.

4. Don't expect us to be ok when you think we should. For everyone else life goes back to normal pretty quickly. I can remember watching people thinking, "don't they know what happened to me, they seem normal, but I'm not". Sometimes it takes longer for others. This doesn't mean ignore us all together until you think we are ok. Ask us if we feel like getting out, or if we would like company. Let us know it's ok to not feel normal yet. We might want a break from our sadness and to get out of the house. Or we might want to sit and talk about our child some more. Just take the time to see where we are at. We might not be able to talk about it yet, but one day we will get there.

5. Encourage memory preservation. This is a tough one because not everyone wants it, or thinks they want it. Sometimes it takes a long time to want to look at them, but if pictures are possible encourage they do it. I so badly wish I had more pictures of Eli. That part of why I do what I do at Drops of Hope Photography. Help them get in touch with a photographer or make sure the nurses do hand and feet prints. Sometimes these things aren't possible, but if they are, encourage them, but don't push them. Sometimes it's the last thing they think they want, but later they might wish they had. We cling to every piece of our children we have.

The main thing is just to offer support where you can. You can get them books. My favorite is Safe in the Arms of God by John MacArthur. Just be there when they need you, even though they think they don't. I remember the first time I was by myself after Eli died. I was so scared to be alone. Just be there when you can and let them go down the journey of grief at their own pace. Don't be afraid to talk about Heaven and how wonderful it is there. It is the one comforting fact when you lose a child. Join them on the journey of grief, pick them up when they fall, but never drag them down the road. The journey has many twists and turns, hills and valleys, just ride it out.

“Sorrow is one of the things that are lent, not given. A thing that is lent may be taken away; a thing that is given is not taken away. Joy is given; sorrow is lent. We are not our own, we are bought with a price . . . [Our sorrow] is lent us for just a little while that we may use it for eternal purposes. Then it will be taken away and everlasting joy will be our Father’s gift to us, and the Lord God will wipe away all the tears from off all faces. —Amy Carmichael” 

Control...

Control. It's something ultimately we all want. Society goes crazy for it. People kill for it. People fight over it. It breaks marriages and friendships. It causes wars and standoffs. As a noun the definition is: the power to influence or direct people's behavior or the course of events; and as a verb it means: determine the behavior or supervise the running of. Control is power. Power over another person, over your job, over you life, etc. Our human nature wants to control every aspect of our lives, or at least mine does. I think that somehow if I am in control that makes me more safe. If I am driving the car, for example, I feel less anxious because I am in control. Or I am not as worried when my kids are with me because I feel like I am in control of their safety. However I am slowly figuring out that being in control (or at least thinking we are) is not always a good thing. 

I believe that God has the utmost control of my life and the events of this world. I also believe that He gives us a choice to let Him completely be in control of our lives, or to try and hang on to the things we think we can control. He teaches me lessons sometimes daily about letting Him lead. Things always work out better when I have faith in His control instead of my own. 

I have been blessed in the last few weeks to witness first hand some of the miracles that can happen when we just trust and let Him drive. About a month ago I was called to go to the hospital for 3 different cases in one week. I was actually at the hospital 4 times that week. This is very unusual to be called that often, since months had went by since my last call. It wasn't easy. It is very emotionally draining to go back there. God always provides the strength to get through, but it does take a toll. However this time 2 of the stories had happy endings! That is not normal for what I am doing. It was such a special blessing and lesson for me. Their stories are so inspiring I wanted to share them with you. 

First up Jacob. I met Jacob and his parents when I was at the hospital to take pictures of another patient, Autumn, who I will talk more about in a second. When I met Jacob he was 2 months old, had already been through heart surgery, and was back in the hospital. He wasn't doing well. The coordinator at the hospital asked me to go and see them. She said things didn't look good for Jacob. When I got to the room, I met his parents and grandparents. They were very shaken up, upset and worried for their baby. I knew by the looks on their faces what they were feeling. I have felt those feelings before. They didn't want to do pictures that day, but I told them I would come back anytime to do them. That was Saturday. Then I got a text from Jacob's mom on Tuesday or Wednesday asking if I could come back to do his pictures because he was going home the next day!! I was shocked. I didn't know what had happened. She told me Jacob had drastically improved and they were sending him home. This was nothing short of a miracle. It was so amazing and refreshing to go and take pictures of him, knowing he was going home. He was mad and didn't like being messed with, and it was awesome! 

Then there's Autumn. I met Autumn after the coordinator called me and asked for me to meet with the parents. I don't usually get a lot of details about the patient until I get there. I never really know what I am getting into. This case was the same. All I knew was that Autumn was 2, had been in the hospital for some time and that the doctors had recommended the parents withdrawal care. I spoke Autumn's mom on the phone and then I went just to meet with her. We talked about her options and pictures that she wanted to take. We discussed options of taking pictures before or after Autumn passed. Her mother shared her story with me. I will share the details of the story that Diane wrote for this post later, but here's what I gathered from my time with her. Autumn had some medical issues when she was born and had surgery. She had since been mostly ok, with a few issues here and there; but she was a mostly healthy normal 2 year old. Then she got a virus which had done so much damage to her lungs the doctors said it was irreversible. She was not conscious, and had maxed out the things they could do for life support. Her mom shared that the doctors continued to say that things would not change for Autumn, they recommended that her parents withdraw care. However her parents had so much faith in God, they were not ready to give up on Autumn yet. They continued to push the doctors to try new things and they never lost hope. I have to be completely candid about my feelings the day I went to take pictures of Autumn. It was hard, but it the midst of so much pain her parents had been through, we had a good time. We enjoyed taking pictures of things they do normally with her. They read her books, fixed her hair and did handprints with her. The best part was when her mother held her. This was not an easy task because she was connected to many different wires and tubes and monitors. The nurses we so accommodating and helpful. They insisted we could do it and that she could hold her baby girl. This sweet mama had not actually held her baby in months. It was an extremely emotional moment for all of us. I am so blessed I was there to capture it. 

After I left I had so many emotions and feelings. I was so grateful to be there and capture such special moments. But there was a part of me that wondered if not withdrawing support was the right decision. I wondered if Autumn was suffering longer than she needed to. Don't get me wrong, I believe in miracles and believe God can do anything; and I prayed for Autumn fervently. But in that situation with the doctors saying over and over that it was impossible for her to get better, it seemed so black and white. It hurts me to even admit that I was that small minded and faith less. 

I continued to check on Autumn and stay in contact with Diana. I stopped by a couple times when I was at the hospital visiting other patients. Her mother told me how Autumn seemed to be improving, but the doctors insisted it wasn't anything definite and the outcome was the same. 

Then 2 weeks ago I got this email from Diane. 

"Just wanted to give you an update on Autumn because it's been a while and I don't want to leave you hanging. Autumn is still hanging in there, and the current hope is that they will consider her for a trach. It's unclear whether she's actually doing better than when you came, but she has been able to tolerate lower settings than they thought without continual decline. They'll be discussing her this week and evaluating whether she's stable enough to go through the trach operation. So while she is still immensely critical and something could happen at any time, hope is not lost.

Regardless of whether we'll be calling you back here, we're really glad to have done "happy photos" with you. Thanks again for doing that and we look forward to seeing them whenever they're ready!"

My heart leaped when I read the sentence HOPE IS NOT LOST! I love it. Then last week her mom updated me with this message.

"I am so happy to also tell you that Autumn is doing well!! She got her trach last week and has been doing great with it. She's still got a couple weeks at the hospital I think, but they hope to eventually send her home! Stop by if you're at the hospital between now and then!"

How good is our God?! How wrong are we when we doubt Him? We so often want to be in control of our life, but is it better when we are in control? If Autumn's parents had taken control for themselves they would have listened to the doctors and taken her off support. They could have said this is something we can control, we will end her suffering if the doctors say she won't get better. I don't know that faced with the same decision I would have been able to have that same faith. I admire their strength and ability to fight against all odds for their daughter. I am so grateful that God is in control of our lives. Not doctors or nurses or parents. Just God. All we have to do is trust Him enough to completely let go. Easier said than done right? I pray for the ability to do so, and I have to remind myself daily. I will never forget Autumn and how she inspired me. 

Here's some more details from Autumns' mom. I asked her to write down the details to make sure I didn't get any of it wrong. 

"Autumn came into the hospital for a routine heart cath, and we expected to be discharged the very next day. That night, she suddenly started crashing and wound up on ECMO. The next day we learned she had a really bad virus. 3 weeks later, she finally came off ECMO and we expected the worst of the virus to be behind us. But over the following 2 weeks, she started looking worse, not better, and her trend made it seem like she was in her final days. In what looked like possibly final hours, the doctor put her on her belly, even though that was already tried without any real success. But she responded shockingly positively this time around, and we had renewed hope. However, she then plateaued again and starting declining, and we were told that any improvements were only temporary and that recovery was ultimately impossible. (This is when we called you.) After that, she continued to hang in there, stopped declining, and even looked like she might possibly be improving. So we made some progress and had renewed hope once again. After more bumps in the road and being told again that Autumn's state is of concern, the doctor that saved her life the first time came back on service and changed her vent settings. She has had a very smooth positive trajectory since then and we are looking forward to discharge! It will still be a few weeks, and we'll probably camp out in rehab for a bit before going home, but she has basically met the criteria for getting out of here!"

One thing that scares us out is knowing that somewhere in that journey, some people would have withdrawn support. But we had decided that so long as Autumn was hanging in there, so were we.

May God be glorified through Autumn's story!!!"

May God be glorified indeed. 

*I need to put a small disclaimer and say that in no way am I saying not to listen to medical professionals when it comes to your children, or anyone else. They do the very best they can with all the information they have. I am so thankful for them and their commitment to caring for others. Especially the ones who work in the PICU at Kosair. They are amazing. Before I began this photography journey and have now spent so much time there, I wondered how they did it. I wondered how they could get through each day, when they lose so many children. Now I see, when you have miracles like Autumn and Jacob, that is what keeps you going. The ones who you get to see go home, and the ones who beat all the odds. I have spent many hours there watching them, talking to them, working with them. These session take a long time, and there is a lot of waiting. I am all the more thankful for them now. I hope that they see the glory of God shine bright through children like these stories. 

                                                           


      Autumn

        


                                                           Jacob

       

4 years... The Lamb and the ram

Today is the day my sweet boy would be 4 years old. So hard to believe that it has been 4 years. So much has changed. I am so thankful that he came into our lives. I still miss him everyday. Yes the daily life is easier, but time doesn't really change much. It is January again, the month I hate more than any other month. Every child we lost was connected to January. January 4th 2014,  we lost Luke. January 9th was the due date of our first miscarriage before Eli. January 16th is Eli's birthday, and January 23rd he died. It still hurts that it's his birthday and he's not here. I can't help but imagine if he was here and we had 3, or 4 if Luke was here too, boys running around our house. Richie and I were talking and imagining what it would be like if we had 6, 4, 2 and 7 months, boys. Wow how our lives would be different. I have to admit that I think I have always pictured my family more like that. With 4 kids and all the craziness that brings. I am so incredibly blessed and happy with the 2 we have. There is so much love in our home it's hard to imagine it being anymore full. However I have to say the picture of our family is different. So many expectations, so many dreams that are gone. That brings me to a devotion that I have been writing for my leaders group at a Bible Study I teach at. So if you are reading this and you are in that Bible study, spoiler alert, I will be giving this devotion, or similar, or Tuesday. Also it's a little lengthy, so I apologize, but I hope you think it's worth the time.

When I was thinking about what to write my devotion on I was reminded of a speaker that I heard at a Kids Ministry Conference. Angie Smith is my favorite writer and speaker and she was at the conference the first time I went. If you don't know her story, she is worth looking into. So I am not going to claim that all these ideas are mine. They came from her and she is an amazing writer and knows a ton about scripture. She spoke that day about Abraham and Isaac. I couldn't get this story out of my mind when I was preparing for my devotion.

Abraham was a very faithful man. God had promised him that he would make a great nation from Abraham's descendants. Now, if you don't know the whole story, Abraham screws up along the way. As we all do sometimes, he wanted to rush God's plan, and help Him out a little. That didn't go so well. Fast forward to when God fulfills his promise and Abraham and Sarah have Isaac, in their very old age. They got what they were promised, a son. Then God says, I want you to take your son, whom you love, and sacrifice him as a burnt offering to me. There are many parallels in this story to Jesus, but I will leave that for you study more yourself; but one of them was this wording is the same as used in John 3:16. This was also the first time the word love was used in Scripture. So Abraham gets up early and sets off to do what God has asked him to do. He doesn't delay, he doesn't try to talk God out of it, he doesn't even tell Sarah (probably because she would try to talk him out of it). He just gets up and does it. He doesn't even know where to go. God just says go and I will show you the place. Abraham looked up and saw the place from far away. The word looked up there in Hebrew was ra'ah. It means to look or to see, or to provide. Keep that in mind as we will see that word again in this passage. So they set out and wander for 3 days before God says, ok this is the place. Before they go to fulfill his task, they go to worship. This is the first time the word worship is used in Scripture. This could be a lesson all on it's own, but can you imagine the horrible agony Abraham is in. He knows what he's going to have to do. He has been wandering with Isaac for 3 days thinking about it. But he stops to worship. God is good. Even in the terrible times, He deserves our praise.

After that he tells the servants to wait behind, and he and Isaac set off on their own. He tells them we will be back. He still had faith in God's promise. Isaac was probably a teenager, and Abraham was very old. So Isaac was there willingly. Isaac was probably starting to wonder what was going on as he notices something is missing. He says " My Father...Behold the fire and the wood, but where is the lamb for a burnt offering?". Abraham answers simply "God will provide for himself the lamb for a burnt offering my son." Here we see the word ra'ah again, when Abraham says God will provide the lamb.

Abraham builds the altar, and ties Isaac up and places him on it. Can you imagine the pain he was feeling as he tied up his own son and placed him there? He raises his knife to kill Isaac and just as he is about to do it, and angel of the Lord says STOP! Based on Hebrews 11:19 I think Abraham thought he was going to have to kill Isaac, but he thought God would raise him from the dead. He remembered God's promise, but I think he really thought he would have to kill Isaac first. So Abraham looked up, and there caught in a thicket was a ram for sacrifice. The word looked up there, ra'ah. So Abraham offered it as a sacrifice and God asks him what he will name that place. He names it The Lord will provide. There is the same word, ra'ah again. I think the 2 meanings of that word had huge significance here. Not only did God provide, He saw him. He saw Abraham's pain, and He sees ours.

What I never noticed about this story, until I heard Angie Smith speak was this. Abraham said God will provide the lamb. But what he got was the ram. God has made the same promise to us. Jesus is the Lamb that takes away the sins of the world. God fulfilled his promise we got Jesus. He is going to come back one day and set this awful world right. He made a way for us to be with Him forever in Heaven. He saved my sons, even though not the way I wanted. I wanted the ram. I wanted God to provide a way for them to be saved the way I saw fit. I wanted the ram, but I was never promised the ram. I was promised the lamb and I got Him. Because of His sacrifice my sons are waiting for me in Heaven. We will one day reunite and we will be that family of 7! Not in the crazy worldly family of 7 sense, but in a way that we will worship God forever in eternity together. So today on my Eli's 4th birthday I want to remind you that on the days when you don't get what you expected, you don't get the ram, remember that you got the Lamb. You have Jesus, and He will be back one day to make it all right. Remember He sees you. He sees your pain. He sees your struggle. He loves you.

Happy belated first Heavenly birthday to Luke, happy 4th Heavenly Birthday sweet Eli. We miss you and we love you. You have changed us. You have changed the lives of so many people. I hope to keep honoring you in my life here, and I can't wait for the day when we are all together again. What a great day that will be!

The Journey Continues

So many of you have followed me along this journey since we lost Eli in 2011. I can't believe in January, 4 years will have gone by. 4 years without him. 4 years since my life changed completely, since I changed. I wanted to share this part of the journey with you also. On December 5th I had the honor of photographing my first hospital session. (You can read more about what I am doing with my photography ministry here.) It truly was an honor for me to serve this family and do one small thing to help them in the darkest day of their life. I am sharing this story with the permission of the family of this precious child. The picture above is one that I took of their sweet baby. I have their permission to share it.

Richie's cousin JT's wife Natalie, who is a doctor at Kosair, sent me a text to let me know that there could be a family who would like photos taken of their child soon. I immediately starting praying and asking God for the strength to do what I knew He wanted me to do. It's amazing how you sometimes just know you are doing the will of God. I was completely comfortable knowing that I was at exactly the point in my life He wanted me to be, even though I felt unable, and unprepared for such a huge responsibility. I was confident that His strength would get me through, but I was still anxious. After all, if this is the last chance this family has to take pictures of their precious boy, what if I didn't do a good job? It is a huge responsibility and honor to me to be asked to capture these pictures that will be priceless to them.

There was a huge lump in my throat all the way to the hospital. I knew I was going to the PICU at Kosair, the very same place my son died. I also knew that I was going to watch another family experience the same pain. All I could do the whole ride there and all the time I waited when I got there, was pray. Sometimes I didn't even have the words to say, but I knew God knew what was on my heart.

When I arrived I was able to meet the parents and talk to them a little about our son's story, and the story of how God changed my life through his death. They appreciated the fact that I knew what they were going through. I asked if they had any questions for me, and they asked me a few, the first being, "how did we get through it". In a way I was so glad they asked that question. It's one I get a lot. I love that though that question I have had many conversations about God's goodness. It was only Him who got us through. It was only through Him that I was able to survive. I pray everyday that that sweet momma holds close to Him to get her through it too.

I waited in the hospital, while they prepared to say goodbye to their precious 4 week old, little son. I sat only a few feet away from the room where I held Eli when he took his last breath. I could not help but sit and think about the irony of God. When I left that hospital the day Eli died, I thought to myself, "I will never come back to this place". Richie had been back the same year after Eli died, to the same place to visit a friend who lost his grandson there. Then I thought "how could he go back there? I will never go back there". Then only a few days after Asher was born he got sick, and there we were back at Kosair. I had no choice, I had to go. Over the next year of dealing with his genetic condition (more on that here) I went back many times, and I grew more and more comfortable with it, but I never had to return to the PICU, thank God. Now here I was staring at that same room. There were times during the 4 hours I was there with this family that I thought I might fall apart. I shared every moment of their pain. I often relived the pain that I felt when we lost Eli. I thought I wouldn't be able to do it. I didn't do it, God did. It was His strength and He brought me there. I was able to be with this sweet family as their son took his last breaths. If someone had told me 4 years ago that I would have been where I am today I would not have thought it possible. I know by now that with God anything is possible.

I am not sharing this story to say good about what I have done. I want to help others because of what God has done for me. This is all about His redemption story. I believe He came redeem any circumstance. I want to share that with everyone I can. Especially those who have felt the pain that I have felt. It is a pain that can sometimes feel so strong and so tight, like a noose around your neck. But God can redeem your pain because there is hope. I pray that I shared that hope with this family. I want to continue this ministry to share the hope and light of Jesus with the families that need it the most. The ones that are surrounded with the darkness of this world. It wasn't easy, and I have thought about them everyday since. However, I am confident that if this is what God wants me to do He will equip me to do it. Thank you to this family that allowed me to be a part of their journey. They are now woven into mine. Please know that you are in my prayers everyday, and I will always be here if you need anything. Glory to the One Who Redeems!

"But now, O Jacob, listen to the Lord who created you.

    O Israel, the one who formed you says,

“Do not be afraid, for I have ransomed you.

    I have called you by name; you are mine.

2 

When you go through deep waters,

    I will be with you.

When you go through rivers of difficulty,

    you will not drown.

When you walk through the fire of oppression,

    you will not be burned up;

    the flames will not consume you.

3 

For I am the Lord, your God,

    the Holy One of Israel, your Savior..

...you are precious to me.

    You are honored, and I love you."

Isaiah 43:1-4

Here's the latest...

Things in my photography ministry have taken off!! I am nervous and excited to update you on what's been going on. 

First off, after reading my post about what I wanted to do, Richie's cousin Natalie, who is a Dr. at Kosair immediately contacted me. She sent my information to a lady at Kosair. The lady I spoke with basically said they are in need of someone now. I explained to her my concerns of not feeling worthy or prepared for such a big responsibility as preserving memories for these precious families. She said something that stuck with me. She said something like, this may be all the pictures they ever get, and they would be happy with anything. Isn't that true? I would love to have any pictures I could possibly get of Eli. We of course have some, but not like I would like to have. In the midst of all this I read a sentence in a Bible study that I am a part of that read "Satan loves to capitalize on believers feelings of unworthiness."

That part really hit me. Have I been holding back and letting Satan capitalize on my feelings of unworthiness? Well, no more. I am moving forward in this mission to serve people. I told the lady from Kosair yes, to call me when she needs me. What exactly does that mean? Well I am not exactly sure yet. She will call me, could be anytime, when there is a need, or a request for a photographer. It could be a child who just might spend most of their first few weeks or months in the hospital and the family won't get that time back. Or it could be a child who won't come home from hospital with their parents. 

This is a starting point. I don't know where this road will take me. I don't want to limit God right now and say I know exactly what He has in store. I know I want to serve people who have experienced a loss (whether that be loss of time, or loss of life), through photography. I am not talking about just hospital settings. I would like to do family pictures for people after they get home from the hospital or whatever need they might have. 

So for now here's where I am at. I need to work on my portfolio and get in some practice with other families (besides my own kids, who are just a little sick of my camera in their face...). I need some families that would like to have some free mini sessions and let me practice on them. I have a few spots available so if you are interested please contact me. I would love to come to a location that you would like and capture some of this beautiful fall background before it's gone. So we will have to hurry!!  

Here is the name of my photography ministry: 

That's all I have right now. A name, and some hopes of helping people in the future. I would love to share with you all some specific prayer requests. I would love nothing more to know that people are praying for this ministry and praying for what I need. If you are willing would you pray the following:

 1. That it succeeds. That God has His hand all over it and He makes it possible. Make it possible, for people to be served, and touched, and ministered to in a great time of need.

2. Pray that He opens the door for more help, knowledge, and information about this "business" as He already is.

3. Pray that emotionally I can handle the great deal of pain this will no doubt remind me of. I know and trust that He will provide the strength if it is what He wants me to do. 

I have some physical "needs" to get started that I am working on. If you could pray for those also that would be great. One is families to practice on, and build my portfolio with, another is some things I need to purchase that I feel will help out tremendously, so just pray for the ability to pay for those. I am hoping for a flash and diffuser to help with the hospital lighting when it might be dark, or with no natural light. Also I would like to take an online course very soon. 

That's where we're at. Things are moving along. Thanks again for your continued support. 

My New Journey...

It has been a while since I have written a post. I think I start most of my posts with that sentence or at least feel the need to say that. To be honest, I haven't had much to say lately because I haven't felt like I had anything worth saying. I have been trying to stay busy (successfully), trying to get past our most recent loss. But I finally feel like I have something exciting to share.

Photography is something that I have been interested in for a long time now. The things I have learned so far, I have learned from friends, family and the internet. I mainly got into it because I wanted to be able to take my own decent pictures of my kids. I love documenting their lives. Recently, using photography as a ministry has been on my heart. I didn't really know what I would do, or how I would do it, just felt a tugging at my heart that I have felt since Eli died, to help people who have lost a baby. I really wasn't sure how those two things would fit together. A couple weeks ago I had the chance to help a friend and photograph her new baby. This day opened my eyes to a way that I could do what I had been longing to do. This friend had also lost a baby. I was able to take pictures of her rainbow baby, and bless her and myself.

This is it! I can help people who have lost a child by taking pictures of their family (for free) and get a chance to minister to them, pray for them and love on them. Someone did this for us after we lost Eli, and it meant so much to us. I don't know all the details yet, and I am a ways off from beginning. I don't feel like I am up to the standard of photography that I would like to be to offer this service to people. To do that I need to take some more classes, get some more equipment, etc. These things are expensive. However I believe the Lord provides always, if we are doing what is in His will. The same week that I took these pictures an opportunity came to me that I didn't expect. I don't know if it's the answer, but there is something in me that believes that the Lord brought it to me for a reason. I wasn't seeking it out, it just sort of found me.

I am so excited to say that I am going to begin selling ThirtyOne!! I think that the extra money earned from this can help me get my photography ministry going! Yay! I love ThirtyOne. I love so many things about it. I love that it is a Christian based company, I love their products, and I love their people!

So how can you help? Most of all please pray for me and this new adventure. As I said it is a long way off. I have a lot to sort through and a lot to learn. One thing that I feel especially called to do is to go to hospitals (when asked of course) and take pictures of babies who might not get to come home, or who are spending most of their newborn days there. This will be extremely emotionally challenging for me. The things we are called to do are sometimes the things we think we could never do. "But with God, all things are possible."

Second buy some ThirtyOne, host a party! I will be offering a special incentive to whoever hosts my first home party. You can go to www.mythirtyone.com/brookefolden to check out the new fall catalog, which is awesome!! I will be posting more about ThirtyOne later, but please check it out and let me know if you would like to party!

Thank you for your prayers during this exciting time. I am so excited to help people who I feel called to help. Please pray for the Lord's blessing.

Brooke

Birthdays and feelings...lots of feelings...

Today is January 16th. The day my precious 2nd son was born. The last 2 times his birthday came were different. His first birthday I was pregnant with Asher. Last year we had Asher and Grant and things were ok, better than ok. We were happy again. We could celebrate his birthday and the life he had with joy. Today is different. I am still incredibly thankful for the short life that was such a blessing to us. I am celebrating him. I am happy because I had him; but I also feel sadness. It is hard to separate the two because for one they have always been intertwined. At different times there might have been more of one than the other, but happiness and sadness were always together when it comes to Eli. For now there is sadness again. It feels like the scars of losing him have been ripped open. Losing this baby, Luke, was like losing Eli all over again.

I don't like writing a sad post on Eli's birthday. I would much rather like to tell you about how far we have come and how much his life made such a difference in ours. However I have to be honest about where I am at at the moment. I still feel sad and confused. I don't understand why I have to bury another son. I feel like there is a storm inside me and at times it feels like I am drowning. I struggle to just keep breathing. And then there is the calm, the times of happiness and I almost feel guilty for being happy. To be honest, there are more laughs than tears in our home. I am still blessed beyond my wildest dreams. I have two beautiful babies here that are the reasons I keep going. They are happy. They play and laugh and make us laugh. I am so thankful I have them. I really do try to focus on that. But, I can't help but feel like that's the text book answer. I feel like I am supposed to be perfect at this whole parenting thing. That because I lost a son, I am automatically more grateful and take nothing for granted. This couldn't be further from the truth. I feel so guilty for not being grateful for every moment when I was pregnant. When I was so sick everyday, so tired and unable to do anything that I normally do. I was not always grateful. I am still not always grateful for everything that my kids do. I have moments where they make me angry, and times when I just want to be alone. I am not a perfect mother. Losing Eli and Luke and the others, did not make me a perfect parent. I don't have all the answers that I feel like I should. I still take my kids for granted. And I hate that.

We are so thankful that we have so many people around us that love us. We have had so many kind words, cards, hugs and prayers that we can't count them. For that I am so grateful. However when people come up to love on me and tell me how sorry they are, I feel like I have to make them feel better. I know that sounds strange, but I feel like I have to say that I'm ok, I have two kids at home that I'm so blessed to have. I do feel incredibly blessed to have them. But can I just say that for a moment, I AM NOT OK. I don't feel like I am fine. I don't feel like I want to be happy. I honestly want to crawl in bed and stay there forever.

This, of course is not an option. I have to keep going because of my family, and because I am called to do more than lay in bed and feel sorry for myself. For now it just feels better to say how I feel out loud. In no way am I trying to discourage anyone from talking to me about my babies, or about what happened. It actually makes me feel better when people acknowledge that something happened. It feels good when people let us know that we are loved and you are thinking of us. I don't mind talking about it, especially when I feel like I can help someone else.

This may all sound like a downer. Sorry for that. I wanted to write these things to possibly help someone else, and for my own sanity. It helps me to just pour out how I feel. I also want other people who are hurting to know that they are not alone. That what they feel is normal. I understand that sometimes just getting out of bed is an accomplishment. It is so comforting to me when I read a post that describes exactly how I'm feeling, so if this can help someone else then it was worth it.

So today we celebrated. We made a cake. We celebrate the life of Eli. I can't believe it's been 3 years.  We will continue to celebrate Eli's birthday on this day forever. We will celebrate and wait for the day we join them in Heaven. We can celebrate that because of him we changed our lives and decided to serve the Lord with everything we have.

I choose to celebrate Eli's life on his birthday. I don't however want to celebrate his death. This is why I don't celebrate my own birthday. I want to bring this up because I know some of my friends and family don't understand it. For me, that day (my birthday) brings nothing but pain. Although Eli technically died the day after, my birthday was the day we lost him. I can't celebrate that. That date is just a painful reminder of the darkest day of my life. Every time I have to give that date for legal, paperwork, or identification purposes, I feel that pain. I re-live it. For this reason, I don't want cards or presents, or birthday cake. If you feel the need to do something for me, do a nice thing for someone else. Send someone who is sick a card. Pay for a random person's meal. Do something good in the name of Jesus and let me know about it. What a blessing it would be to me to know that because of my son, someone else heard about Jesus.

Thank you for reading this long and some what scatter-brained post. I am sure that one day I will feel normal again. I pray that I will be able to write with more clarity on the situation at some point. Maybe one day I will have all the answers. I think that probably won't happen this side of Heaven. I am not ok, but I am learning to live with it. Thank you for your patience and understanding. Especially my husband. Richie has been so amazing. He has been there for me and taken care of me. I am so grateful for my Heavenly Father who has never left me. He has given His own Son for me.

Eli, I love you and miss you so much. Thank you for what you taught me. I am so grateful that I am your mommy. Happy Birthday sweet boy.

January 3rd, 2014

I hate this. I can't believe I am even typing the words. We lost another baby. That is honestly something I never thought I would say again. I am in shock. I am broken. I am confused. There are so many questions. I am 17 weeks, so why now? So many things to talk about, but not now. I know that one day I will share more details of this nightmare, but for right now I have nothing much to say. I am still processing. I am sitting here in the hospital, broken, confused and angry. I have always been very open and honest about my grief for if nothing else than if it can help one person. I still feel that way. I feel like I will be able to help someone through this. But for now I just need to be angry and broken. I have so many questions, but there is one thing I know for sure. I am not lost. I am not forsaken. There is still a God who loves me, who died for me, and who now is taking care of more of my children than I am. I have 3 babies in Heaven. I look forward to the day that we will all be together again. I am hurt, I am confused, but my faith is not shaken.

I ask that right now please just be in prayer for our family. We don't need anything, and there is nothing anyone can do except pray. Mostly I ask for prayer for Grant. He is heartbroken. He doesn't understand why he has had to lose 2 babies. Thank God he was too young to remember the first miscarriage. He feels the same as we do, confused, hurt and angry. He is only 5 and really can't process all those emotions. I can't make sense of it myself, let alone a 5 year old. This month is going to be especially difficult for us. January holds a lot of pain already. Eli's birthday is just 2 weeks away. We need some time to hurt and grieve. I appreciate everyone's love and support, but just understand if we are not ourself for a while. Please understand if we don't want to go out much, or participate in "normal" functions. If I don't respond to your call, or text, or email, I am sorry. Just know that we love you all and we appreciate all of your kind words and prayers.

We will get through. I am comforted knowing that God is close to the broken hearted. We have two beautiful little miracles at home to be thankful for. They keep us going and give us a reason to go on.

Psalm 34:18 "The Lord is close to the brokenhearted; he rescues those whose spirits are crushed."

Oh Lord, our spirits are crushed, thank you for always rescuing us.

The "undiagnosis"-God and Faith triumph

Most of you know about Asher's diagnosis that rocked our world 12 months ago. He was diagnosed with Glutaric Acidemia type 1 almost exactly one year ago. On July 7th 2012 to be exact. Through a series of events which I will describe in a moment, today he was "undiagnosed"!! We went to his regularly scheduled doctor's visit with his geneticist and were shocked and amazed when she said "he does not have Glutaric Acidemia". First of all before anything else, I would like to say PRAISE GOD!! He is so good. I can't even begin to describe how good He is, and has been to us. 

Now, how did this happen? About 4 months ago Asher had a skin biopsy to confirm his diagnosis. He had this because they tried to confirm it with a DNA test and it was normal. They had originally felt that even if the skin biopsy was normal, they would still be worried and have to look for a different disorder and would continue treating him for GA-1. This lead his Dr. to say that we could choose whether or not to do the skin biopsy, but it was minimally invasive and wouldn't change much as far as treatment. So, Richie and I decided that we didn't need to put him through anything else. Then at his next routine 3 month check-up she had changed her mind. After consulting with some more experts she wanted to proceed with the biopsy just to see if they needed to be looking for something else. They took his skin cells to see if they would produce the enzymes that he supposedly lacked. This particular test took 3 to 4 months to get results. I have to be honest and say that I was not particularly hopeful when he had this test done. The Dr. seemed like more than anything, she expected a confirmation. To me there was the fear of the unknown, and what if they had to put him through more tests to find something else. So when the Dr. came in the room first today (which usually we see a nurse, and then a dietician before she comes in) I was scared. I was expecting something bad. Then she says "I am so excited to tell you the good news, he does not have GA-1"!!

How did they get this wrong? Well without losing you in a bunch of medical mumbo jumbo that I don't understand myself, here is the short answer. Sometimes with other disorders they see what is called a "transient" case. Which I think basically means it was there but then it is gone and there isn't really an explanation. They haven't seen this in GA-1 because GA-1 is so rare anyway and they haven't documented any cases. They now have (including Asher) 5 kids in this scenario. That's it, 5 cases ever. There haven't been any publications on it, but now with this information and having 5 kids we hope to work with the doctors to get this information out there. Now with all of their medical explanations, or lack there of, said, I also have to say what I believe. GOD CAN DO ANYTHING! Could He have healed Asher, YES! This isn't something that just goes away. There is not a cure.

Was there a reason for this trial? Like every trial, I believe that yes absolutely. I don't know for sure God's plan for Asher, or His reason for anything, but what I do know is this; I have learned to trust the Lord in the past year especially, but also in the last 2 1/2, more than ever. We had to totally turn this over to God and trust Him to keep our baby safe. We had nothing else left to do. The doctors could not reassure us that even with all of the medical intervention that he would be ok.  We had to fully rely on God in a way that we as humans often take for granted. We committed Asher's life to the Lord, knowing that God gave him to us for a reason. I know that he has a big bright future ahead. I have to say here that it was much easier for Richie than me. I always want to control things, and especially with my kids, I don't like not knowing that they are safe, or feeling that I am in control. 

What's next?  Well we have to slowly get him back to a regular diet. We have to make changes slowly and they will watch and see how he reacts. He is off all his medicine effective immediately!! We will take him off his special diet formula over the next few weeks. In a few months he should be on a normal diet. This alone is huge!! He will not have to count everything that he eats. He can eat dairy, meat etc. Most of all, the greatest relief is that we don't have to worry that he will get sick and have to be hospitalized or worse. He is normal!! However, it is not true, as daddy says, that he isn't special. Much to the contrary, he is so special. He changed our life, strengthened our faith, and taught us never to take anything for granted in this life. Everyday is a gift. And Richie, I am still going to baby him a little longer, even though he is a "normal" baby. Now I should say that they will monitor him to make sure it doesn't creep up again, or cause any more problems, but I don't see anything coming up. They ruled out the other 2 possible genetic disorders already.

This is one of the happiest days of my life. Of course the birth of all of my babies was a great blessing and incredibly joyful. I am so thankful for each of them. But with Asher, I was always just a little scared. After Eli died I didn't think I could face that again. Parents always worry about the safety of their children, but when you know what losing one feels like, that thought is always somewhere in the back of your mind. If I hadn't been able to give that fear to the Lord and trust Him to take care of all of us, I think it would have eaten me alive. Not only that, but we wouldn't have had Asher. We thought that after Eli died we couldn't go through that again, so it wasn't worth it to have another. How blessed we were that we gave that fear up, and trust in God. That's not to say it wasn't there, and it didn't creep up on me from time to time throughout my pregnancy and the last year. It definitely did. Each time God lead me through. Asher was and is his child. He is only given to us for a short time on this earth. And what a privilege it is to be his mother. The same goes for the other 2. I feel just as privileged to be their mother. Thank you Lord for this glorious and wonderful gift. All glory to God from whom all blessings come.

James 1:17
"Whatever is good and perfect comes down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow."

2 years....

Before I sat down to write this post tonight I read the post that I wrote last year on Eli's birthday. Much has changed in the last year. We have made so many changes in the time since we had Eli it feels like so long ago. Yet it seems like only yesterday. When I read my post from last year, I realize how far the Lord had brought me, how much He has healed me. Overall in the last year God has done amazing things in my life. God gave us Asher, which has helped restore the joy back to our hearts.  I still have those feelings of missing Eli. Especially today on his birthday. I want to hold him and love him and tell him happy birthday. However, I now realize that does not define me. For such a long time I was scared to let go of the pain because I felt like I was letting go of him. I was worried that without the pain I had nothing. But I know that isn't true. I have Christ. That has to be what defines me. I had to make the choice that losing my son would not define my life. Some days I do better at that than others. I spoke a little about this tonight in my women's bible study. The lesson this week was about our identity and what defines us. This lesson really hit home with me. I have really learned over the last year that God has to be what defines us because everything else can fade away and if that is what defined us then we have nothing left. If being a wife, mother, father, husband, good at our job, etc. is what defines you then what is left if all that is stripped away? God has used my sweet little one to teach me so much. This lesson is one in a long journey; of which the Lord has taken every step with me.

Today my baby would be 2 years old. I want to celebrate his life and all it gave to us. In such a short time he changed so much in us. God completely changed the course of our lives through this little boy. We are both in ministry full time now. I work part time at church, and no longer work at school so that I could focus on my family and my ministry. We moved to the parsonage at church so we could be in the community and better serve the Lord here. We have dedicated our lives to the Lord. We don't always do a good job at remembering why it is we do what we do, but we strive to serve Him to the best of our abilities. This is the best way I can honor my son, to honor the Son that was given up for me. God freely gave up His son for me. I could never do the same. So by praising the Lord with my life I can make sure my son did not die in vain. My prayer for all who read this is that you see the Lord in my life, that you see a follower of Christ, not just a mother who lost a son. If my story stops there I have missed the point, missed the mark.

I hope to be more faithful with writing and updating you more on Asher's condition and on our family. Now that I have more time I should be able to do that. Thanks for those who are still sticking with me and reading.

Happy Birthday sweet boy. I know you are having the best birthday party ever in Heaven. Grant, your daddy and I miss you so much and we love you.

The answer we thought we wanted to find...

Ever since Eli passed away I have wondered what really happened to him. We had autopsies done. We had a genetic evaluation. We had a second more specialized examination of his liver by a liver pathologist in London, England. We met with his pediatrician. No real answers. Eventually we became ok with the fact that we would never know what really happened to him. Aside from wanting closure for what happened, we had also wanted to know for our future. To know if any future children could be affected, or even Grant. We were told what happened to Eli was a random chance occurrence that would "most likely" not happen again. We were told that it was "most likely" not genetic. Up until this past Thursday I was comfortable with that thought. I was comfortable with the fact that we would never have the answer.

On Friday July 6th I got a phone call that will forever change my life. The last test that was done on Asher the 2nd time we were at the hospital came back. It was a test the geneticist (from the same office who did the evaluation on Eli) had sent off to Denver, Colorado. The only thing that we were told about the test at the time was that it was really obscure and it most likely wouldn't show anything. We weren't concerned about it at all. Every other test had come back fine, so we had no reason to believe that this one would be any different. But the voice on the other end of the phone that day was saying things to me that I couldn't even fathom at the time. She was telling me a test came back positive. That Asher had something called glutaric acidemia type 1. I couldn't even process it. I had her spell it. I wrote it down and asked the only questions I could come up with at the time. I got a very basic explanation of it at the time. The next few days were like a world wind of worry and tears.

Basically in a nutshell people with GA-1 have trouble breaking down proteins. The proteins can build up in their systems causing very harmful damage. We read a lot of scary stuff about it on the internet. We made a pretty much unnecessary trip to the hospital out of fear. Our world was turned upside down. It wasn't until this past Thursday that we actually had our appointment at the geneticist and got some answers. They told us they now know that this condition is what happened to Eli. This was absolutely the most terrifying news I have ever heard in my life. The thought that this could happen again is my worst nightmare. It wasn't all bad news though. I actually felt a lot better after we left our appointment. When we first heard the news that Friday I pretty much felt like it was a death sentence. This is not the case. I will try to give you as much detail as possible with out boring you with a bunch of medical terms.

It is a genetic condition caused by a recessive trait that both Richie and I are a carrier of. It is really rare for 2 people to get together that are a carrier for the same thing like this. What happened to Eli was the most extreme case. They have actually never seen it happen in utero. The bleeding in Eli's brain and the damage to his liver was already starting before he was born. Normally it takes much longer for the proteins to build up and cause any damage. Kids usually start showing signs by the time they are 3 months old. Then, it is so rare ( 1 in 100,000) that they don't figure out what it is until much later down the road, like when they are 1 or 2. By that point there can be much damage that is irreversible. However 10% of people who have it never even show ANY symptoms and don't find out until they have a sibling that has something happen.

Both Eli and Asher were screened for this at their newborn screen. That fact really shocked me. Why wasn't it found? Well I am told it is a very broad test that is designed to pick up any organic acid disorder. Some kids are what they call low excreters, which means they don't excrete enough of the glutaric acid to be picked up by the general test. The test that the Dr. ordered that found it was a test specific to this disorder. He had to know exactly what to look for. I can't tell you how thankful I am to him. If it wasn't for him finding it early Asher might have suffered much damage before it was found. It is a very good thing that we found it early. It is more manageable than I originally thought, and than it sounds. It is actually treated mostly with diet and vitamins. Asher is now on a combination of breast milk, regular formula and a very specialized formula just for his condition that is protein free. His diet will mostly, at least in his childhood, be protein free. This means no meat, dairy, rice, peanut butter, eggs, etc. He will have to have some protein to grow, so he will have very limited amounts of those things. That is why he still gets a little breast milk and regular formula now.

The biggest danger to him now is if he gets sick. This too is manageable, but we have to be very cautious and proactive. Kids with this condition can easily have a metabolic crisis if they are sick and aren't eating well. Therefore they have to be hospitalized to get fluids if they aren't eating well. We have a protocol sheet we take to the hospital outlining exactly what to do. It is during a metabolic crisis that the bad things can happen. Brain bleeds is the scariest. But with all that said, if we are on top of things, and treating it with his diet, the risk of those things happening goes way down.

His Dr. for this will be the geneticists. He will only see a pediatrician for vaccinations. There are no specialists in this because it is so rare.

If you are thinking wow this is a lot to take in, you are in the same boat as me. I don't know everything about it yet. I have to say I was, and still am overwhelmed by it all. I was completely devastated. I don't have all the answers. I have a lot more questions than answers right now. I don't have a clue what God's plan could be through all of this. I have went through many emotions during all this. Through all of the anger, pain and questions I have a few things that I cling to that get me through each day. First, I have learned that I have to take it one day at a time. Everyday I ask God to give me the strength to get through the day. Just 24 hours, that's it. When I look at the big picture, and the unknown future it is too much to handle and too scary. So I take it one day at a time and go from there. So far God hasn't let me down, and even on the really tough days, we have made it. Second, I know no matter what God won't leave us. He has been by our side all the way through everything we have been through. I know He loves us, and I trust Him. This hasn't always been easy, but it's all there is. If I didn't have that I couldn't make it through. Third, I am so thankful and happy to have my little boy. I will cherish every single moment with him, just as I have with my other sons. He is beautiful and fat and happy. He already weighs 10lbs and 12oz!!

I will update everyone more as we go. For right now we are just adjusting to our new normal. We are waiting for Asher's DNA test to come back. Hopefully they find which jean has the abnormality and then they can test other family members. It is unlikely that Grant would have it since he hasn't shown any symptoms, but they will test him just to see, and find out if he is a carrier. Our brothers and sisters will also have the option of getting tested.

I don't always have the best insights, but the goal here is just to share my heart and be honest. Also I believe in the power of prayer. If you would, please pray for Asher. I have faith that he is going to be just fine. Richie and I also need prayer for strength and faith. As always thanks again for reading and caring about our family. Thanks for supporting us.