10 and 1

As many of you may already know, it was our first daughter's birthday on Thursday. She would have been 10! The night before we pulled out her baby book and 2 of her movie montages. The kids surprisingly were very excited to see. They climbed up right beside us and actually oohed and aahed over each picture. Seth and I were so taken aback at their deep intrigue of their big sister. We ended up pulling out her little dress, bonnet, and socks. We tried to explain her baby doll size by laying the clothing in their arms, you could tell they were able to understand a bit more by the look in their eyes. We then pulled out the movie montages when Aria broke out into uncontrollable sobbing. A good friend of ours, who had lost her 2nd child and then went on to have 8 more. She told me that her 1st child relived the trauma for a while. As for the others that followed after she died, she told me that each child grieved in their own way. One child in particular responded the way Aria did. I was kind of shocked at her response, but was reassured that it was perfectly normal. One thing about life is, it's not a pretty package. While I believe it's good to try to protect our children from unnecessary exposure, there is a fine line of balance. If you shelter them to much, they won't be prepared for the real world that sometimes is forced into their lives, such as the death of a loved one. Change is inevitable. They don't realize that Aurora was cremated. I just think that's much to graphic to deal with, even I still struggle with it. Isaiah is picking up on the burial site, but I think he still doesn't fully grasp what it means. At this time, I don't feel they need to know just yet, so we just tell them it's where we go to remember them. I know the time is coming soon for Isaiah, since the child is deeply interested in non-fiction books that tend to always include life cycles, so he knows something is up. Still, it was a precious time that I will cherish for the rest of my life. We tucked them into bed with tears in our eyes of gratefulness. These kids mean so much to us, they have no clue how important they are. We talked about Heaven, we tried to capture the joy and beauty of what is to come, so there was no room for fear. We explained Aurora and Elijah could be some of the first people that they will see and how they will hug them and show them all the beauty that awaits them. They went from tears of sadness to giggles of glee, it was quite heart warming. The next morning they chattered on and on about Eli and Aurora and were quite excited to go to the flower store and pick out some baby pink spray roses for big sis. They have been watching the flowers bloom with great anticipation. Every couple of months we go to their grave and switch out decorations. We replaced the plaques for a pink and blue glass looking butterflies. The mausoleum is pretty strict about fresh flowers during the summer months. They tend to draw in more flies and it makes quite the mess, so this year we got a butterfly balloon. I just never can quite bring myself to by a Happy Birthday balloon, so it worked out just fine. We ended up being able to drive out to the beach and watch the sunset as a beautiful Aurora Skye rolled in. Beautiful pinks, purples, and colors swirled around almost as if Aurora got to paint it to let us know she was close by. We chatted about what she'd be doing (I'm guessing we'd be bordering on being uncool) and how full our house would be with all of our children, how different our lives would be (probably not The Sound of Music by any means). I used to avoid talking to people about their children who were Eli and Rory's age. It was much to painful to hear about all the things we were missing out on. Now, I find it a joy. I love hearing about what other 10 and almost 8 year olds are interested in. It gives me an idea of what they both might have been like. Those that are close to us, know that we openly discuss our kids. While it is so painful that they aren't with us, we are filled will great honor that G-d entrusted us with His children, even for a short time. We are honored to be able to share our story to help others in their time of need, whatever that might look like. I feel compassion in a way I never did. I still don't know why it had to be that way, but we are able to see that what was a such a grievous time for us, can bring glory to G-d while shaping us in a way only He can do. When people ask me how we got through it all, I can only say, by the grace of our Lord. Honestly, if I had had it my way, I would have died with them. While a part of me did, G-d cultivated a newness in my heart that I had never had before. You always hear the term, "out of these ashes, beauty will rise." I get it now. If you know someone who has just lost a loved one, please do not enforce this realization on them. It takes time, a lot of time, to get to this place. It doesn't make our loss any less painful, it just gives us hope in greater things to come. For us, it doesn't matter how your child died, any way you look at it, it is sheer agony. Whether it be a miscarriage, still born, a baby, a toddler, a young child, a teenager, and adult, they are still your baby no matter what. I miss my little girl, I can only imagine who she'd be today. Would she have let me grow her hair long so that I could do fancy do's ? Would she be a mother hen, or more carefree? Did she have her Daddy's dimples? So many questions I still have, so much longing in my heart to know. So, like G-d has been teaching me all along, I must be patient. I feel blessed to have two children who embrace siblings that they have never met. I feel blessed to have friends and family who have walked our same path and some that haven't, helped carry us through. I feel grateful to G-d for opening up paths for us, that if it weren't for Him, we never would have seen. I don't know what it is about dates that make things so final. The 23rd marked exactly 1 year since my health took a wild turn. Of course it wouldn't be till August that we realized it was gastroparesis, but it's a date I will never forget. I miss food so much. Sometimes I wonder if it happened to teach me to cope with life through prayer and not by eating, because food was my coping skill. I still cling to the hope that I will get better, again, patience. Going through the deaths of our children, our apartment burning down, my husband's work burning down, a diagnosis for my child, and GP has all had one deep connecting point, life is hard. There are no guarantees for tomorrow, we aren't as in control as we think, and each day is a gift. I won't tell you to just smile and be okay with it, that isn't how G-d wired us. I believe we go through these things to learn who is really in control, to truly rest in Him because things get messy. Even though I know all these things, I am still nervous about my surgery tomorrow. I know that each thing happens for a reason, but it doesn't make pain any more bearable when going through it. So I am on journey to learn to really be grateful to my creator for good and bad circumstances. It's easy to rejoice when things are going great, but it can be really hard to praise Him when everything is falling apart. Sometimes I get the thought in my head that maybe He forgot about me, or is trying to punish me. I just read in a book about praising G-d in all circumstances because it shifts your focus to the truth, without Him, we are nothing, we have no hope. While the words are easy to read, it's extremely difficult to put into practice, especially when times are hard. I have been struggling this last year in the physical sense, harder than I have ever had deal with. I feel like war has broken out in my body and now I have to teach it to make peace. Since Isaiah has been home from school it has been another challenge, how to keep 2 kids busy when I am so slow. Instead of leaping to the what if's of the week to come, I have to try to keep my focus on the present moment at hand. I have been trying to go on short walks with them, go to the store, go to church, you know, everyday things that I used to never think twice about. The kids begged Seth to pull our bikes down. I thought they were nuts to even think I'd get on that thing. Then Seth challenged me to try. I looked at him like he had flown the coop. The last time I rode my bike was 2 years ago. I actually rode right into the mailbox and scratched up my leg. Pretty embarrassing. I told him I didn't remember how. He just smiled and said "once you have done it, you'll never forget." In my mind I thought "your nuts!" To appease him, I agreed. We got on the bikes and road down the street. The wind was on my face and I felt a freedom I haven't felt in a year. I felt youthful. I felt alive! As each corner approached I'd wobble back and forth while Seth cheered me on. We didn't go far, but when I got off the bike I couldn't stop smiling. Isaiah got to ride with us, with Aria in tow. They thought it was a hoot! It took a lot out of me, but it felt good to try something different. Each day that I have a good day, we try that much harder to make the most of it. If things weren't changing enough, Aria grew out of her toddler bed. Some great friends of ours, who are like family to us, gave us a bed for Aria. She is super excited because it was their daughters bed, so that made it especially cool. I know it was time, but it was weird to think the next time we have a crib up, it'll be for our grandchildren. For every ending, there is a new beginning. I have been praying for a season of restoration, for healing. Now that I have just rambled for an hour, I am asking for prayers for tomorrow. I am having surgery with general anesthetic and in the past, it's been pretty rough. Also, since having GP I can't take pain meds, so I am really praying that I'd have a quick recovery. Thank you all for your continued prayers, I believe G-d is answering our prayers, even though I tend to get quite impatient. Please hold us in your prayers and I will update as soon as I am feeling better. Watch, Pray, Believe, and be Amazed.

Upcoming

I wanted to be sure to add some updates. Things have been a bit busier at home, now that Isaiah doesn't have school. I have noticed that he misses the busyness of school along with all of his friends. I am realizing how much I need to be establishing some type of a schedule for all of us. Last week was nuts, and pretty much for the next few, it will continue. Due my health issues, I gotten used to being at home. While it is a lovely safe place for me, I'm bored. Last week I finally ventured out on my own to mall and to the store. While they were very brief stints, I felt like a teenager who just got their drivers license. I turned up the music a little bit louder than usual (Rocking out in a mini van, totally cool) and was able to go at my own speed in the store (turtles probably walk faster) but I had a good time. We have Aurora's 10th birthday coming up on the 21st. We have been day dreaming of who she'd be today, what she might look like, and what her latest interests would be. A decade has gone by and it's weird, I am still not used to her being gone. Years ago, I had promised her I would get everyone together and celebrate her birthday, but with all that is happening, Seth felt it would be to stressful for me. I still am scheduled for botox on her day, and we are praying that I won't need it. So, if you could say some extra prayers that I wouldn't need to have it, I'd so appreciate it! If we don't go to U of M, Seth and I have decided to go on a date night. We haven't done much of these lately and when we do, we just stick around the house. My hope is for us to be able to go to the beach and watch the sunset and see an "Aurora Skye Sky!" That is the hope, but if not, then we'll roll with it. The kids are grasping more and more the idea of having another brother and sister that they can't see. They are asking questions and we are trying our best to explain. I have got to load some pictures up as so many things are happening. I am also scheduled to have surgery next week with full sedation, so I am trying my hardest not to let my nerves get the best of me. On the 23rd it will have been exactly one year since GP entered my life. It's been a wild year of crazy ups and downs. I honestly didn't think I would make it this far, so it's been quite bittersweet. I'll try to update soon, as always asking for continued prayers of healing and peace. Grace and Peace.

With Hope

I am so sorry that it has taken me so long to post. Traveling tuckers me out. I'll just cover the basics, since we all know medical jargon can be quite complicated. After waiting close to 3 hours for our appointment we finally met with the doctor. He seemed more irked about me cancelling my scheduled botox treatment. I have been having a little more issues eating lately, so it's up in the air if it is stress related or that the botox is wearing off. I have been trying to do more self positive affirmations, since I tend to be a realist. Being real is great, but it can take you down roads that aren't so good if you let it. Seth piped in and asked firmly about the manometry. The long crazy wait for a crazy test! We have anxiously been awaiting this for so long, this mystery test that is supposed to give us big leads rights?! Instead he casually had the PA pull up the test and said that it looked better than he had expected along with a long explanation of what the test was looking for. We had little understanding of all he listed off, so I just looked at him point blank and said "So am I getting better??" He spewed out more jargon, where upon I restated my question. I then stared at him and said "Am I getting better? Any improvement? Anything!" He reluctantly said "You're holding your own." I replied "So that's good, right? Please give me some hope!" I flashed one of my cutesy smiles and probably looked like a puppy at the pound trying to lure in a new owner. He sighed and chuckled a little bit (I try to do ice breakers!) and said, "Okay, you are doing better." After going through the manometry explanation I asked him if he thought the botox would have caused any possible false readings. He said it was possible. In my mind I am thinking "are you nuts! I went through that miserable test just to have a maybe?!" We figured there was no point in beating a dead horse any longer and to just drop it. When being weighed, I was at the same weight I was at the last visit. I was disappointed. I was hoping that I had gained since then, and was pretty shocked to see I hadn't. He said now he would be watching me to see how I trend. From a medical standpoint, botox is in your system for approximately 6 months. For each person it varies how long it works. Like I said, my eating has slowed down a bit and I am just hoping it is the stress of all that has been going on and that it has nothing to do with the botox. He rescheduled another round on June 21st, Aurora's 10th birthday. Not exactly the way that I wanted to spend such important day. I had even debated about having a small birthday party for my special little girl's double digit birthday. It's hard enough knowing she isn't alive to enjoy her day, but for me to be having a procedure, it's a bit much. So please pray that I wouldn't need to have this done. I am praying that regardless of how clinical his report is, that my progress would continue to trend upwards and that I'd be on my way to healing and that I won't need anymore botox. I know G-d heals me through medicine all the time, but well, you know.... He really didn't have much to add after that. I was relieved to hear that he is putting all testing on hold, since my reports are not stating anything obvious. PRAISE THE LORD!! We asked if my diagnosis was still gastroparesis, his reply was, we treat the symptoms. Seriously, the dude is a riddle. I am still listed as high complexity and he said he wants to keep an eye on me for a while. It wasn't much, but it left us feeling hopeful and that's just what we prayed for. I am praying that my healing is more present than I realize. I have been struggling a great deal with depression throughout all of this. I feel guilty, instead of signing our kids up for karate and gymnastics, we have medical bills. I am really hoping that I am able to heal this summer. I want so much to be able to take the kids to the park, bike riding, play dates, the library, anything! They need the socialization just as much as we do, and boy do we need it! Even though the doctor wasn't full of wealth of super positive charged news, I am still choosing to look at it with hope. I am going to get better. I am a fighter and I have a lot to fight for. I just ask that your prayers would continue for healing and peace.

Short and Sweet

Asking for prayers for tonight and tomorrow for our whole family. We have our much anticipated appointment at U of M tomorrow. We are praying for safety as we drive, peace for our nerves, wisdom for the doctor and us, great test results, but most of all HOPE!!! Each time we have gone, I have left feeling quite frustrated and I am really praying for some big time hope. Also prayers for our parents as they watch the kids, for everyone to have a wonderful safe time:) That's all (deep cleansing breath) oh yeah and while we are at it, some miracles;)

EGD complete

I finally got my EGD over with yesterday. We had to go to yet another hospital, making it hospital number five. It's interesting to see how each place handles things differently. The last couple of times I have had to go in for scope, it consists of waiting in a large room and then being taken back to a larger room, sectioned off by curtains. This one, we went to the actual hospital and were admitted on the floor to an actual room. The staff was quite friendly and thankfully they got me on and IV right away, I was pretty depleted from the fast. Here's a first, I actually got in early! I have never met this particular doctor before, but apparently he had records from me from about 11 years ago. I was never made aware of this, but they had actually suspected gastroparesis (there is a wide variation of normal to severe) then. I don't remember why I didn't go back or what the circumstances were, but I found that quite odd. We talked to him about all that has been going on and even asked if they'd take me on here locally. He said it shouldn't be a problem. I asked if they do botox here and in the pylorus, he said he had done it maybe twice. I'm thinking in my head, never mind. He asked about the botox and was quite curious about it, but really didn't know much about it. They ended up taking me back for "twilight sedation." While everyone was really nice, I was awake more than I was asleep. I could feel them pushing the tube down and my whole stomach was quite sore, not to mention my throat was feeling pretty tore up. They had to keep on adding more medication, but I kept on waking up. After the procedure, the doctor came in to review what he had seen. He explained that they found two small cysts on my pancreas. He didn't feel they were big enough to drain for a biopsy. He found everything to be "normal!" I vaguely remember him saying something about not taking the gall bladder out due to the fact that it would cause more harm than good. So other than that, not much more else to add, which all I can say is "Praise the Lord!" He did add that he'd rather me stick to U of M, they feel I am in better hands there. I believe he is the 4th local GI specialist that has said this. They all seem to feel that they can take me on until we go through all of the history, where they end up backing out. So that puts us right at G-d's mercy, I still truly believe He is the only one that can heal me. The rest of the night I fell asleep on and off and ended up being energized at midnight, go figure. Today, my throat is pretty sore, but I am so grateful the test went well. Today is Isaiah's last day of school. This is quite the milestone for him, but also for me. Several months ago, I didn't know if I would make it this far. As you can imagine, I am beyond grateful. I spent the morning reminiscing how far Isaiah has come. He has proven to be intelligent beyond his years, but he wasn't able to express his feelings. Through early intervention, he has come leaps and bounds. He is playing with other children and engaging in child activities. We recently have started up a magnet chart of expectations such as; making his bed, sharing, being respectful, picking up toys, saying please and thank you, etc. He has quite a list of things. At the end of the day, we go through the chart and see what he accomplished without having to be reminded. He is doing so well with this. I have begun to realize how important organization is to kids, they need those boundaries! He gets so excited to see the magnets that say Good Job! next to his task. I know positive reinforcement is important, but I forgot how rewarding it really is to all who are involved. I also am realizing he is capable of a lot more responsibility than I had previously given him credit for. If that wasn't crazy enough, he likes it! I never realized how eager both of my kids are, to please me. We were blessed enough to have a close friend of ours (thank Tara!) come out on his field day and cheer him on. He was so excited to see her and chattered on and on about how field day was the best. I keep on forgetting how simplistic children really are. I think the media leads us on to believing that to be good parents we have to buy them stuff, when in reality, they just want our approval. I'm sure the stuff is always a bonus, but who cares if you have a lots of things, but no one to tell you how beautiful, smart, and important you are. To top it off, Seth told me about a little boy in Muskegon that suddenly died during field day, he was about Isaiah's age. Even I sometimes forget how blessed I am and take so many things for granted, especially my kids. You would think after all we have been through, I'd know better. Please keep his family in your prayers. I made sure to hug my kids extra, I am so thankful for each day we have together. So today even though I feel pretty battered from the scope (ultrasounds EGD's a bit bigger) I am pretty achy, tired, and I need to eat, but I am happy to be alive. My Mom and Dad would always do something fun on our first and last day of school, so I am hoping I feel better to be able to add some fun memories to this special day. Thank you all for your prayers and your words of encouragement, I really need them. Our next big hurdle is U of M on Friday. We are praying to get hopeful news from the doc from all of the tests and for safe driving both ways. As always, I am praying for healing and peace. I keep on hoping the testing will wind down and that things will just get better. I have ran into several people who actually think I look pretty good, which is quite the compliment. I look at pictures from me even a month ago and it's pretty icky. I am hoping to gain some weight and be a healthy woman again. I'll try to keep on updating, thank you all so much for your continued support. One day at a time!

Night before

I am going to type as fast as I can before my computer battery goes kaput, so bear with me. It's been a bit of a rough week, but on the exciting new front I am experimenting with juicing! I had a rough go of it in the winter and gave up on it, but I can't bear being around all of these fresh fruits and veges, and not be able to indulge. My first try was cantaloupe. I liked it, and it like me! Seriously, you have no idea what a treat it was! I tried out some cucumber which smelled heavenly! I was going to mix the two, but thankfully tried it before. It was super bitter, we even peeled it and it still had such an after taste. It could have been the cucumber itself, but I ended up causing me to burp like a sailor, so that was a no go. The final experiment was some blueberries. I tried a small amount and it was SO tasty! I had a harder time after, but I'd brave it again:) Tonight at midnight I begin my fast for my EGD ultrasound. It finally hit me at dinner when Isaiah asked me what was going to happen tomorrow. I feel terrible because his field day was supposed to be last Friday and got rescheduled for tomorrow. He told us it was going to be the worst field day ever! I explained I need this test to get better, so we can do lots more things together. I am really nervous about fasting, going under, and the results of all of this. I know I shouldn't be. I keep on trying to focus on being brave and trusting this will all work out for G-d's great plan. Frankly, I still chicken. I could really use some heavy duty prayers for tonight and tomorrow. The EGD doesn't start till around 3 PM, so it'll be looooooooooooooooooooooooooong day without calories, blech. No profound thoughts just "bawk bawk" yella' chicken. I don't know when I'll be coherent enough to update. I'm hoping I can come out of it easily, last time it took hours. Thank you in advance for the prayers, I really need them (wide eyed and hiding under a blanket)!