6/9/08
6/6/08
It has been nearly a month. I continue to play out Samuel's last days each week. Especially yesterday. A month before yesterday was Samuel's 24 hour period of giving us all the love he could muster. That was the day he was supposed to go to sleep and not wake up, except he didn't. The pictures from above were mainly taken a month ago when he was loving us for the very last time on earth. These still hurt to look at and I really want to archive this page but I know that when I turn this page, there will be no more "new" Samuel memories and times to share with you. That reality hurts so much still. A month ago today, we took Samuel in for his last platelets. I had to work to wake him up that morning after he colored his last picture for me in the 5/6 pic above. He took a four hour nap and I could hardly rouse him. I asked him if he wanted to go in or just sleep fearing that he was just going to sleep. I asked him how I was going to take him in there and he shot up out of sleep to say, "In my stroller." Then back to bed he went. He wanted to go. I rode with him right next to his seat in the van holding his head and body upright in his chair as he slept the entire way. I cried tears for how horrible it all was and knowing that it was his last trip in the van. He slept most of the transfusion away and hardly even noticed RN's Susan and Chris coming to see him for what they knew was the last time. We all prayed over him and cried as we left. The trip home was equally as awful. Samuel never woke up when I dressed him to leave or carried him to the van. I had to support his whole body on the way home as well. He never noticed us get home or the fact that we ordered pizza for dinner. We hadn't had pizza in months because it was something he could not eat. He would have loved it, but he did not even notice. I sat in the rocking chair and held him like he was a little baby and at one point, in his sleep, he reached up and hugged me. He was there, and he was gone. I carried him to bed, changed diapers for half the night, and he never woke. It wasn't until midnight that he sat up and said he wanted to go downstairs. I got Mark up so that we could spend every last second with him. And we stayed up for several hours watching TV until suddenly his pain caught up and then we played catch up again. We wanted Samuel to be free from that torment and yet wanted to freeze the small amount of time where he was coloring and content. The remaining day was tormented and while there were some good parts, it is a day that has faded from my memory mainly because I was so sleep deprived. And of course, the morning he woke up and went to Heaven, then there is that. I am reminding myself when I wake up at 6am that Samuel got up and went to Jesus. And for him, it is happily ever after. Don't get me wrong, I am thrilled for him. I look back at his life and I cannot think of a kid who deserves Heaven more. God has been dealing with my emotions and perspective this week and I know that in the end, Samuel won.
Samuel won the hearts of tens of thousands. Over ten thousand people visited this site in just one day during the week Samuel ran to Jesus. Over 50k in a weeks time visited the site. I know based on the many letters I have received that hearts came back to Jesus. Faith was restored. Many who never have prayed for anyone prayed for the first time because of Samuel. I believe that God planted a seed in them that day and that He will become a reality in their lives through Samuel. People with no faith in LOVE learned what true love was through Samuel. People who did not even know it wrote down words from God and mailed them to me because of Samuel. People who feared they did not know what to say helped heal parts of my heart. Samuel won. He won people for Jesus.
People who I thought would have walked away after Samuel left us are still drawn to our family. I got a phone call this week from the Cesium support person, Larry. I saw the number come up on caller ID and thought he probably wanted me to talk to someone about the protocol. I certainly did not tell him about Samuel, remember, I haven't told anyone. I answered the phone and heard, "Jen, it's Larry. I am so sorry." I was shocked to tears. I could not even speak. He said, "Jen, are you there?" "Yes, I am here," I say as best I can choking back tears. I asked how he found out. Apparently his daughter found our site, most likely through their own site tracking since I have him linked. Now, he did not have to call but I have worked with him for ten months and he obviously cared about us enough to do so. It really touched my heart. They had read enough of the site to know that in the end Samuel's gut failed him and his cancer got the upper hand. He ended the call saying that if I even just needed to talk, I could call anytime. Then, toward the end of this week, we received a card from Samuel's GI. Almost a month later, she is thinking about Samuel and us. Want to know what I got from the Onc or the Onc Clinic? Nada. Perhaps my GI is not as used to her kids dying so she actually still has empathy. The card from the GI was more an admiration card to Mark and I than a sorrow filled card. She also mentioned that she wants to do something incredible for our kids, 'because she knows Samuel's medical care was expensive." And I mean INCREDIBLE. Her card brought back a flood of emotions on it's own but truly, I thought that the e-mails we exchanged just about a month ago would have been the end of things. Samuel won. He affected people. I know my GI will not forget what we were able to accomplish in the last year and while my Onc would probably argue cancer vs. gut until he died, I know my GI learned something and wouldn't She wrote that "We taught her to think outside the box." WE taught HER! Samuel won. He got one MD, and a good one at that, to realize that as she put it, "Other things work." She said she will never forget him or us. I believe that.
We went to Costco today and as we checked out, I looked over and saw the Huggies on the end cap and it was a dagger to my heart. I remembered having Mark buy those over the nice 7th Generations diapers we were using since Samuel was just going through 15 a night in the end. I don't know if I felt sick because I missed him, or because when Mark bought them, it was just an awful time or what. But I stopped myself and thought that I should not be feeling sorry but I need to be rejoicing because we don't have to live like that and more importantly, Samuel doesn't have to live like that.. On May 8th, Samuel got up and rather than hang around here another day and suffer it out, he went to Heaven. He probably feels sorry for us stuck here. Can you imagine all the cool things he can do now and I just know he would want us to see. Can you imagine all the cool places he can go, animals he has, people he has met and he has done it all without us? It must seem strange to him that we are not right there in paradise too. When I think of all he suffered here and especially the torment in the end, I can feel nothing less than joy in that he got up that day and left. Samuel won. He got the ultimate prize in life. He did his job on earth and was rewarded with Heaven. He is not lost, he is not dead, he is just relocated. Many people have written me saying that I must be so proud. I am. I believe he changed many lives and brought people to God, possibly more in his exit from earth than in his lifetime.
What is the ultimate way to hurt the devil for what he has done to our family? Turn people to Jesus. Samuel did that. I remember taking him to the ER last summer and he told the RN, "I am going to heaven." I said, "Well, not today." Boy does that sound familiar, only in reverse. Let me tell you that that statement made an impression on that RN that she did not forget. Someone else asked him if he knew Jesus and he said, "Well, duh!" Someone asked him if Jesus was in his heart and he said, "Of course, Jesus is cool." My most precious gift from Samuel was his drawing of the "Three Horn Dinosaur with Jesus in it's heart." Even Samuel's animals have Jesus in their hearts. He wasn't afraid to tell people about Jesus. I am amazed at the people we run into IRL who hint around about God but don't come right out and ask. They ask if Samuel "said anything" as he left us. Well unfortunately, he was too busy having a seizure to speak. So I tell them he was well prepared for eternity. He knew where he was going, where we would be and who was waiting for him. People seem relieved once we say that, as if it gives permission to talk about God. These are sad and serious times we are living in. Samuel had the joy of the Lord if I ever saw it.
In Samuel's last weeks I spent quite a bit of time crying and grieving right next to him. Do you know that he never cried or partook of any of the sadness? We told him where he was going, what he was going to do there, who he would see there, and that he would always know where we were and he accepted that and was fine. On one of the last days here, he told me it wasn't fair and started to cry about leaving and I reminded him how much better off he was going to be and he was then fine. I imagine, "You will NEVER hurt again and you can eat ANYTHING you want, " sounded great on those last days of misery. I do believe that his spirit "knew" his earthly time was short based on the things he said and did in the final weeks. I wonder if he wasn't dreaming of heaven or even being shown things especially the day he tried to rip his port out and said, "No more port medicine." He did that right out of a dream. There were also many times where he woke up and sat up quickly like he was trying to "leave" his body only to realize he was stuck in it still. He would seem off balance and say, "Whoa......" when he sat up like that. Even that last night, he would just sit straight up right after waking and seem confused as to what he was doing, or perhaps had been doing. I think there were a lot of things going on that we won't know for sure until we are reunited. I just know that somewhere inside, Samuel knew. He knew that May 5th was to be his last "good" day and he gave us everything he had smiling through death. That was the Joy of the Lord. It certainly wasn't the joy of life. It was definitely love of God because anyone else would have been mad over those circumstances. His spirit was strong and true and I said it on that day and will say it again. Samuel IS divine love. He tried to make US feel better as he prepared for eternity. He understood his life was going to improve the minute he shed his sick body.
I got 900 pictures into photo albums this week. I made a pile of pictures to put away, maybe burn at a later date. The giant album on the table in my living room has all happy pictures. There are a LOT of happy pictures. Again, Joy of the Lord. You can look at them and never know the pain he endured. It makes you happy to see all the smiles, all the places we went, things we did, even though so many things were horrible. One person wrote that Samuel was NOT cancer. We did not live cancer. Cancer was a mountain that we went around as much as we could. They are right in the analogy. We did so many things, made so many memories and never let that stupid cancer stand in the way as long as Samuel was good to go. When things were glorious and Samuel was doing well, we just pretended cancer did not exist as best we could. I don't believe we wasted a day. Samuel did not even know the word cancer until last year and then cancer became synonymous with "demons" and it was just demons after that. He wasn't afraid to tell people he was fighting demons either. Boy, did that bring about many strange looks! Cancer is demonic. My Mom actually wondered if Samuel whispering, "Help me" at the very end wasn't demons knowing their time was near. Well, the demons died with the cancer and Samuel's spirit was free, and he received a new heavenly body the instant he left us. Samuel won. He lived as much as he could in his time here. If I could relive one day, it would be that snow day earlier this year. That was a day I truly wish we had in a bottle. Precious. And many many times, I have spent time with him thinking that it might have to sustain me. Now it does. As I went through the pictures, I reminded Daniel of how many times I told him to get in the picture with Samuel because it might be all he had someday. He told me, "Well, I never believed he would pass." Life's lessons. I still have another 1000 pictures to put away into books. I think I have five pictures of Samuel to every two of the rest of the family. It is funny how I just "knew." I have tons of Samuel baby pictures that were never posted here because he was little and NOT sick. Just being a sweet baby. Oh, he was so cute!
Time keeps ticking away and when I feel sad, I remember Samuel is NOT sad, he is happy. He is waiting for us and he is healed. Do you know that he has lived a month without transfusions, narcotics, nose tubes, ports, shunts, surgeries, anal issues, poop problems, skin breakdown, starving, gut dysfunction, pain, suffering, screaming, crying, or misery of any kind. He has lived a month with nothing but love, happiness, freedom to eat, freedom to play, learn and he has MET Jesus. He is with Delma, my brother, Mac who is Delma's husband, other kids, animals and so many new things to do that he probably doesn't know where to start. Can you wrap your mind around that? I don't think I have ever missed someone so much yet been so happy they were gone. I am glad he got out of his life on earth. It feels strange and sad here without him and we are definitely still not used to it but we are adapting. I have been saturating my mind with the things of God and reining my children in a little as I do it. My other kids have had a free rein especially in the last months and I see many behaviors that I don't like. God showed me this week that Samuel was my best friend because I spent so much time with him. When you sit in a 15x15 room for days on end alone with someone, you really learn everything about each other and how to get along. A child learns how to act really quickly when Mom never leaves the room. Samuel reminds me of Mark and I because we were his only role models. I realized I need to put tons of quality time into the other kids because I want them all to be exceptional and have an impact on the world. They don't need to be sick to do it either. Samuel was exceptional in all that he did and all that he was. There is no reason my other kids cannot follow in his footsteps. I spent a lot of time being Samuel's Mom and a lot less time being Mom to the other kids, that is for certain. So we are definitely working on changing some things here and continuing to unite our family in the love that got us this far in the first place. I have most appreciated the notes from people who could "feel" the love of our family through the updates and pictures. Our family was so perfect when Samuel was in it, and I believe that we can adjust to life as it is now knowing that our family IS still perfect, just different. Samuel IS perfect. But then, his spirit always was. I am tired of grieving. I haven't "lost" Samuel. He is not lost. He is alive and kicking living God's plan for his life in Heaven. Samuel continues to send me signs that he is "checking in on us every day." I cannot feel much grief when I think of him being free of everything he endured here. I miss him, but I am glad he was spared even one more day of agony. I also notice that it is much easier for me to hear from God when I am not wrapped up in sorrow but rather yearning for His voice. Signs from Samuel come when you least expect them but there is usually something daily. When I think I have not "heard" from him and night is falling, something will come forth. And again, I say, Samuel won. He teaches us even from Heaven. I have kids who need a mom and a husband who needs a wife and yes, there will be sadness, but I refuse to drown in it. God has provided us a means to move on and fill the huge void left behind with something old and comforting, and yet still new. And it will provide the opportunity for some great family time. God knows what we need.
This week our family went to the place we are moving Bud tomorrow to walk the fence line and survey for a shelter spot. It did not occur to me until we got there and the kids got out and started running all over the place that this was going to be a little spot of heaven on earth for us all. The land has a year round creek, blackberries galore and is probably just shy of two fenced acres for everyone to play. Since it is "ours" they are free to roam while we do horse stuff. It felt great! I talked to the owners who asked about the Craig List ad. I told them just how much God was a part of us finding them and they were full of goose bumps too. The lady said, "Well, let's give the Lord praise." These are my kind of people! We plan to go get Bud tomorrow even though the weather does not look like it wants to co-operate. Please pray that we get a nice day for the journey and that we are all safe as we travel. The kids are going to Mark's parents but are VERY excited for Bud to get here. I guess I will be buying bulk carrots again, only they will be for Bud. He likes apples too as well as all the grains I used to feed Samuel. I wonder how he feels about garlic????????? Anyway, I know it will be a fun and surreal day for us knowing that God planned it all out. I imagine Samuel in Heaven playing with my first horse, "The Piglet" and thinking I should have Bud to play with now because horses are very fun. The Piglet was another one of those "once in a lifetime horses." Interestingly enough, her life was also cut short and she died from colic, a gut dysfunction. I think she and Samuel have something in common. We are excited to spend some quality time with our horse and our family at this new place. I know it will definitely have healing potential for us all.
I want to continue to thank those who check in, pray, and for your continued generosity. I realized that in the last month, of al the things we have had on our minds, paying the bills or me working hard wasn't among them. Thank you all so much. We are humbled and overwhelmed with your support and sacrifice. We pray that God continue to bless you all and I am certain that Samuel knows you all by name. He is the kind of kid who would want to know who helped him. Much love.
6/1/08
It is June now? Time just keeps ticking away without my little Pooper. Anna has been dreaming about playing with him every night. I am glad he comes to play with her in her dreams. Perhaps that is why he is not in my dreams. Each day she will get up and tell me what they did. I wish it was real for us all.
After three days of droning in a dark sorrow, God reached down into the black water and drew me out. I was able to breathe again. Not only that, yesterday I was smiling and laughing. I can tell you that only God could have accomplished that feat given the pit of despair I was falling into.
I have received so many notes saying the same thing. Everyone believed that Samuel would get his miracle. Many were shocked when he did not. Shocked and angry. The day I signed the DNR form was that horrible day you hope never comes. The day you realized that maybe you are NOT going to get your miracle. Perhaps God took the last couple months off. Samuel did not receive his miracle on earth for lack of us believing or people praying. I know that in that final few weeks, we held onto hope even though we were planning for the worst. We fully believed that God could change it all any instant even though we were preparing ALL our children including Samuel for the event where He chose not to heal Samuel. I fully believe today that if God wanted to restore Samuel's ashes in my room back into the Samuel we miss, He could. Anytime. I sat here the past week reliving all those last weeks trying to sort out exactly what happened and when. You know the hindsight thing? Where did it go wrong? What was the final straw? Why did he have to suffer so much? Why is it all we seem to remember? Why was it all so awful? What was the point of it all anyway? Where was God when our faith in Him never wavered? I believed in healing. Divine health. God's promise of Restoration to our family. What the heck happened?
As I sat and asked God for the answers, I got none. Nothing. How many times have I sat and asked God questions and actually received the answers? Many. Well, I got nothing. And I told God then through so many tears that I have NOTHING for Him. Is He there for me? Does He hear me? I couldn't tell. Fundamentally, my overall faith has not changed and I would never turn from God EVER. For as horrible as this is, I would rather go through it WITH God than without Him. I still believe the same things about God as I did last month, last year, etc. But in so many of the tortured moments I have had to endure, all I can offer God is my sadness. Really. There is nothing else. I told Him that. I have nothing. I didn't even know how to love God at that moment. Or trust Him. I know I should be happy Samuel is free and happy, and while my head is, my heart cannot get past the loneliness. I tried praising Him for making a place for Samuel to escape but that quickly melted back to sadness and tears. Sadness in that I KNOW that He could have stepped in and healed Samuel. Sadness in that I feel my faith was not honored. The faith and prayers of so many were not honored. Honored by God who is supposed to be bound to His Word. I spoke the Word over Samuel so many times. "By His stripes, you are healed." Countless times I spoke that over Samuel. Samuel would stop me after the prayer was done to say, "by the way, I don't have any stripes." For as many miracles as Samuel received, I had no problem reaching out and expecting another. It is hard to know what to do in the moment when you realize it is all over. It is not going to happen. Nothing can change the past. Nothing can erase it, fix it or make it better. As I cried out to God for relief from this grief prison, I felt more isolated and alone than ever. I did not hear God, feel God, nothing. I wondered if God even bothered to listen at that point. Is He even up there at all paying attention to us? Is He on vacation today? What? I know I just need to trust that God knows the "bigger picture" and somehow His decision is best. That is a really hard thing to do with your heart. In my head, I can justify so many reasons why this had to end this way. But in my heart which believes God can do ANYTHING, I cannot connect point A to point B. I just don't get it. Obviously the answers to all my questions are for a different time.
I got up yesterday morning glad that Mark was home for the weekend. The walls start closing in during the week. The new reality which is now mine is setting in and NOT sitting well. Once again, we are stranded here day in day out. The kids play with the neighbors most of the day and I am to go on and do my normal thing. I guess now that is cooking, cleaning, working and schooling. None of which sound very appealing. I just want to get out of here. I hate this house and being stuck in it. And it is not like I can just drive a car away. Oh, no. I am stuck. We could go for a walk, but there is nowhere to really go that memories of Samuel don't shatter over my head. I feel imprisoned in this house, this life and this grief. I don't want to be stranded in any of it. Things have literally felt hopeless. I hate hopeless. Hospitals are hopeless. Grief feels hopeless. Well, yesterday, God showed me that He is still here, He still hears us and he KNOWS our heart's desires. He still wishes to bless us and He brings comfort to the weak and weary. He brings hope to the hopeless. He turns tears into laughter.
Since Samuel's rebirth in the Kingdom, I have been trying to find a place for Bud, my 15 year old horse, which I have raised from birth and only seen twice in the last six years. He lives over an hour away and the last time we saw him was in August 2005, right before Samuel's stoma was taken down. Samuel loved Bud and Bud loved ALL the kids. He was still the sweetest horse and knew us as his family even though we hadn't seen him for three years prior. At any rate, I found a place just up the hill in the next town but it wasn't quite what I wanted. So while I talked to the people on the phone several times, I wasn't sold. Plus, I just had no huge ambition to do any of this moving or even to ride really. It just all seems to trivial. Mark thinks it will help me so much though so I put an ad down at the local gas station hoping to find something a little closer to home and a little cheaper too. There are so many places here with empty pastures. There is also a great trail that goes miles and miles that would be good for Bud to learn on since he is still pretty green. Well, no one has called. The other ads I had seen are WAY too expensive. So yesterday as I am browsing ads again, I find a new one I hadn't seen. It says it is in the next city over but claims to have tons of trails. It is a little pricey but I thought I would just call and see where it was located. I note that the phone number is the same prefix as ours so assume that owners must not live onsite or something. Anyway, a woman with a British accent answers and I ask her about boarding. The ad says there are only two openings at the place so I was very excited to find out she lives just a half mile from us which is within a ten minute ride from the trail and I could even bring Bud home. The lady asked me over the phone if I had issues with barbed wire. Hmm. That seemed weird given the price tag of the board but I started hoping we could just work out some pasture board since I know many who would have issue with the fencing. Also, it was curious that the lady told us that we could NOT ride on the property even though their ad stated they had a covered arena. . Well, we immediately hit the road to check it out anyway because I was most interested in trail riding anyway. I don't care about arenas or stalls too much. The place is lovely, tons of green grass and huge. The lady met us on the front porch. There was no barn with turnouts as stated in the ad, and no arena. All the pastures were huge and each horse was in it's own which I liked. The lady asked me how I found her ad and I told her Craigs List. She said she had NEVER put an ad on Craigs List. I told her what the ad said and we just laughed. Apparently when the ad was posted, somehow the phone number was transposed. Whatever, we had found the perfect place for Bud. It is everything I wanted. Private pasture, not near their house so we won't bother them if everyone comes out. Ten minutes from the trail, fifteen from home. We can put a shelter in the pasture for Bud to get out of the rain. We will be taking care of him ourselves. It is on a quiet road. The people have lived there forever and won't be moving anytime soon. They were both very nice and Mark and I liked them very much. It was perfect and I could actually feel myself looking forward to something. Kaysha really wants to ride and Anna is already a horse nut. On top of that, we can all hit the trail as a family, only I will be riding Bud and they can all ride bikes. Bud really liked following Mark on his bike many years ago. Just seems so perfect and something we can all enjoy together. The cost of boarding at the new place is identical to what we are paying now...read REASONABLE!
And of course, the lady asked how many kids we had. Mark said three and I said four. She asked if we were confused. I said we have one with Jesus. I cannot say it without crying of course. She immediately said she would have never asked that if she knew. Then she said, "Well you know he is just in such a better place and so happy now." This woman I don't even know then gave me a hug and a kiss and said she will be praying for us. I know we will be asked the number of kids we have many more times as we move on with our lives and I hope that everyone I meet is this wonderful when I tell them I have four kids, three on earth, one with Jesus. That was definitely a God moment. I cannot wait for the day I can say with a smile, "Praise God, I have a child in Heaven waiting for me, cheering me on, advocating for ME."
As we were leaving, we were all laughing about the ad having the wrong phone number. I told the lady that it was definitely a God thing. He knew what we needed and sent us there. Their place was everything we were hoping for and more. The people did not seem overly pleased that their number was on Craigs List though so I told them I would just e-mail the person running the ad and let them know. So, I came home and looked at the ad again. I started laughing. I laughed so hard that Mark asked me, "Dear, what did you do?" I showed him the number. The ad number ended in 6239. The number I called ended in 8239. The number in the ad was right all along. I transposed it. All of a sudden we REALLY realized how much God had to do with this. What are the chances that you would dial the wrong number and find exactly what you are looking for? We laughed all day. We smiled all day. I could just see Samuel up there laughing too. Playing a joke on my eyesight. God showed me yesterday that He knows everything about me. Down to the smallest detail. He does not want me drowning in a pit of despair. He is still up there and He is still in control. He is still MY Father just as much as He is Samuel's Father. He has given me something which will help us all heal. He Taylor made it down to the very last detail so that I would know beyond a shadow of a doubt that He did not take a few days off. He is real, not a figment of my imagination as things felt on Friday. He made His presence in my life and in Heaven clear beyond any shadow of a doubt. Even Mark had goosebumps. While it is not the family restoration I really wanted, it is restoring a friend.
While it is not giving me Samuel back, it is a lifeline, one God knows will give me some joy among all the tears that I have yet to shed. Bud can handle tears. Bud does not mind tears at all. And Bud gives hugs. Bud's registered name is NOT Bud. He became Bud when he became my friend. Bud is like a dog. Man's best friend. Bud is a dog in a horse's body. He does funny things that make you laugh and is gentle and kind to little kids and other animals. Mark met Bud when Bud was about a year and a half old. He would come to the barn to spend time with "us." One day while he was watching me play with Bud in the arena, he said,"You will be a great Mom." I laughed and thought, "Yeah right. Like I want kids." Funny how things change. When I called the lady who has been taking care of Bud for me all these years, she was happy that we can have him again after all these years. She was sad to hear that it only happened because Samuel has become a Prince in Heaven. But if I cannot have one baby, then at least I can have the other.......before he is dead too. As we were getting off the phone, she told me, "You know Bud is a once in a lifetime horse don't you?" Yes, I absolutely know. If he was anything less than a buddy, I would have never kept him all these years with the hope that all the kids could enjoy him. He is a gift from God. He saved my sanity 15 years ago and he will save it again and bring joy to not just me, but the whole family. We all look forward to spending time with Bud, riding horses and bikes, and I cannot wait to bring him home just so I can sit on the steps and laugh at a horse in my front yard. I will have to remind him that windshield wipers are NOT food since he thinks they are toys you eat.
So, as long as the weather is good, we are going to get him next Saturday. We will be bringing him home. Finally, after six years. He will be so close, it is just unreal. And I actually cannot wait to get him. I feel joy, and we are still laughing at "what I did." Joy at what God did. I know Samuel is laughing too.
God is still in control. He is still all knowing. I am going to do my best to TRUST that He made the best decision for everyone by NOT healing Samuel here. Just typing that brings the tears still. God showed me yesterday that He KNOWS me down to the core and reminded me in that instant WHY I need to trust Him. He is in control. God gave me more than just a "consolation prize." It was a message from Him to me about trusting him. Trusting Him who knows ALL. Trusting that He still hears even the simplest longings in my heart and knows just what I needed at that moment. So much of what I was shown yesterday is still rolling around my mind yet to be processed and words fail to describe. But that was certainly the loudest God has ever been in my life. Perhaps He was talking to me Friday but I didn't hear through the sobbing so He had to make Himself a little more clear. Trust is a work in progress for me at the moment since my head is good and clear but my heart is broken. But then, isn't that what God expects us to be? We are all works in progress. Samuel's work here is done and I am trying to accept that as best I can. I am trying to move on. I am throwing what little I feel I have to offer God right now into His lap. I am putty in His hands. Mold me, shape me, show me what You want me to do here. Truly, I am broken and easy to mold at this moment. Praise God that I don't have to know it all, do it all, or understand it all right this very moment. I am going to continue to trust Him as I have always done in the past. Through the tears, through the pain, through it all, I will praise Him.
Thank you all who stand beside us, holding us up in prayer. We need you so much and thank you for being here.
And to my sweetest man in the world, you still make us laugh! We know you must be pestering God advocating for us now. We miss you SO MUCH. We love you SO MUCH. We cannot wait to see you again.
5/29/08
Yesterday was brutal. Today isn't much better. I hear the primal scream from labor and am as helpless as I was then to do little more than ride it out. Two days ago, I wasn't doing so terribly but there just seems to be something about Wednesday and Thursdays. I realized this morning that yesterday was the four year anniversary of Samuel losing his colon. And then it dawned on me that perhaps that horrible mourning gut wrenching kick you when you are already defeated feeling could have been because of the day. Only God was kind enough to not add the significance of the day to the burden which was yesterday. Four years ago yesterday was the beginning of the end for Samuel. The damage done to his body before the surgery and loss of his colon was insurmountable. I will never forget the surgeon coming in to tell us the bad news interrupting a "Care Conference" which was going nowhere fast. He looked sick when he entered. I will never forget the first words out of our Onc's mouth. "I have never had a patient lose hi WHOLE colon before." As if it was a remarkable thing. I thought I might throw up. Mark asked about what Samuel's quality of life would be and we were told that after an adjustment period, things would be okay. Well, as we all know now, some four years later, the adjustment period meant more and more suffering and he NEVER had a normal life again. I remember the sick feeling I had upon receiving the news. Sick. I feel it now. It was like a part of me knew that it was the beginning of the end. They brought Samuel back shortly thereafter and I walked out of the conference leaving everyone behind to be with my boy. It felt like he had been mutilated and after reading the OP report, he was. His body had been mutilated by chemo. Most likely aided by the massive ABX and narcotics. I remember sobbing at his bedside with my Mom and Mark trying to console me. I remember being thankful that Patty was our RN that day because she was one of our favorites. I remember having to leave him that night since we were unable to stay with him at night in the ICU. Just another brutality, leaving him like that. I chose to come home that night rather than staying at the parent apartment. I needed to be with Mark and we were just dying inside over the whole thing. It felt like death on that day. And that was only the beginning of a long list of complications to come. My baby. My baby. Why? This complication ultimately took his life but his will to survive, "for us" allowed him to live with the suffering of it almost four years. And here I thought I wasn't going to allow myself to relive the past. This was the pivotal day for us. The day you know you can never go back. We knew it in our hearts. But the complications just kept coming after this brutality and we were never allowed more than a few days to process this loss. That day changed our ability to treat his leukemia because of the gut demise and made it impossible for us to keep him in remission in the end. It wasn't the cancer, it was the chemo. Brutal. Lethal. I have no doubt that Samuel would be alive and in remission today had the damage to his gut either not occurred at all or was less severe. I am certain the entire extent of damage was never even mentioned in the original OP report. Just the look of horror on the surgeons face was enough. The way his voice shook when he told us. That said everything. May 28, 2004. That was the day that changed it all.
Today is now three weeks past Samuel's rebirth into the Kingdom. Things are much more emotional difficult at this moment than they were the day he left us. Reality is sinking in. I woke up at 2am, Samuel's usual play time at the end, then at 5:15am about the time he told me he needed me for the last time, and then just after 6am, the minutes after he passed. Why do I have to relive this over and over? I want to forget it, and yet I don't. All that has been robbed from us is sinking in. I miss him so much and it is an agony which can only be described in groans, moans, horrific animal utterances that the human brain cannot put into words but the spirit understands. He suffered so much to be with us. As I was finishing up his baby books, I realized how different "baby Samuel" was than Samuel at age 4, or Samuel at age 6. I am thankful that baby Samuel did not die in 2004 because while he was special beyond any measure I can describe to you, we were only just getting to know his amazing spirit. The 5 year old Samuel who could have an adult conversation with you is something I will always treasure and miss. The 6 year old Samuel showed me that even a child's mind can differentiate between spirit and body is a lesson I will never forget. He touched the very depths of my heart, and that love made the impossible possible. Even if just for a little while. His love for us was much different than the love we feel from our other kids. Much more all knowing and mature. he had a compassion that none of the other children posses as well. Perhaps they will find it with maturity. After all, they are still children. He was forced to be an adult and we gave him as much control in the decisions made over him as we could. I remember an X-ray tech trying to console him several years back saying, "It's okay, Mom, tell him it is okay" while his gut was twisted in knots and he was miserably crying trying to hold still for them and I had to correct her. "No, it is not okay." I never told him it was okay. I told him, "Mommy's here. I am here with you. I am right here." Isn't that all anybody needs anyway? We all want to know that somebody is here, right beside us. Perhaps they cannot make it okay, but the fact that they want to bear the burden by being near means so much. The x-ray tech later apologized to me. None of this is okay. We are not okay. This will never be okay. Samuel's suffering on earth will never be okay. Knowing that you all, near and far, stand beside us and want to bear the burden helps more than you know. Thank you for that. Throughout a lot of this journey, you have held us up with the love of Christ and it is overwhelming and heartwarming to know that there are people who we won't meet until we get to Heaven who care.
I continue to rejoice and praise God that Samuel was spared any further months or years of suffering because of one monstrous day in history. I continue to imagine what he is doing in Heaven and how one day he will show me around. I am certain that he will have so many friends that it will take me ages to meet them all. I cannot wait to see his smile, hear his laughter, and see his body in perfection. I remember some MD asking about Samuel's medical history at some point during all the drama of 2004 and I told them, "He was perfect until we got here." He is now perfect again. I am so proud that during the worst of times, his spirit was never tainted. I cannot say the same for mine. Samuel is first and foremost, God's child. God entrusted his care to us. We did all that was asked of us and for that have been blessed beyond measure by Samuel's love, strength and spirit. I have to believe that God views earthly death differently than we do. For He is reunited with the spirit He gave us six years ago. He was Samuel's Father long before me. Samuel's job on earth is done and he certainly gave everything he had. I am so glad he was mine. Mark asked me just the other day, "Can you imagine if he was that perfect and was someone else's kid?" He was mine, ours and ultimately God's. We were just the stewards of his earthly existence. I don't think I have ever in my life felt such joy and such sorrow as extremely as I have through Samuel. I am forever blessed by that. I remind myself of this huge blessing with every tear. I couldn't feel this agony over just anyone.
Anna dreamt of Samuel yesterday. He was playing with her across the street with the neighbors. Something he has seldom done. And he was her best friend in the dream. I haven't dreamt of Samuel since Mother's Day so I was a little jealous and yet happy that she is keeping him alive in her mind. I was especially happy that the dreams are of play, not sickness or suffering. All Samuel wanted to do when he was here was play and be normal. His dreams were of that very thing. But inevitably, her dream made me tear up. She asks, "Why are you sad?" I say, "Because I miss Samuel." She says, "Well, I am still here," and gives me a hug. Anna, the one I thought would be least affected by this, is the one most affected and comforting to me. And yet, now I have this four year old who really doesn't need me. Neither do the big kids. They have not only lived without Samuel, but they have lived without me because of the level of care Samuel needed. I am trying to figure out where exactly I fit in to their lives. It is strangely odd. Samuel was robbed of his life, Anna was robbed of her infancy and preschool years with us, and I was robbed of both of their early years. I enjoyed Samuel's infancy SO MUCH. I never enjoyed Anna's after Samuel's diagnosis. There was no enjoyment in anything for so very long. And now I look at all the broken pieces of our lives and have no clue where they fit. Anna seems to be slowly realizing she has parents again. She actually asks us for things rather than Kaysha. Kaysha's burden has been great in this as well being surrogate mom much of the time. Now that she is getting older, I think she will happily relinquish the parenting back to me. Thankfully I don't have to figure this all out overnight because I am not making great progress at the moment.
I was doing a search on Amazon for a specific book recommended by a fellow grieving mom. As I was browsing the list which came up, I get to "I love you" rubber ducks. How the heck did this get into a book search? Samuel perhaps sending me another message? Oh yes, I love you rubber ducks is definitely a Samuel thing. I opened the ducks just to read the description to see if any of the keywords I plugged in were in the ad. None were. They are party favors. Party favors from his birthday in Heaven? Symbolic nonetheless. My sweet boy sent me another message I would definitely notice. I probably should have bought them but I did not need 12. Later this afternoon while I was forcing myself to do laundry, I found one of his plastic bugs from a book long ago thrown out. Where did that come from? A spider. And it looks like someone was chewing on it's face. I thought these all hit the garbage by now. God knows I don't need any more things bugging me. But that is Samuel's humor. The last thing I pull out of the washer is a spider. Perhaps I will do laundry more often to see what other treasure might pop up.
We continue to covet and appreciate your prayers. We continue to be overwhelmed by your compassion and support. Thank you for that. Sending our love right back to you.
5/27/08
"I miss Samuel. I miss my baby. I miss Pooper. I miss my beautiful cutie, the sweetest man in the world. I miss my little nutty." It doesn't seem a second passes that I don't think one of these statements. I don't think my contact lenses have ever been so clean. The longing for his spirit I feel often takes my breath away. I wish I could just step out of my body and take a break from the sadness. It is that overpowering at times. And yet, I would not wish him back here into that body for anything in the world. I rejoice that his suffering is over. I just miss him. I miss Samuel, but I don't miss the suffering. It will be a great day when we are reunited and he has a perfect body. Then we can just enjoy each other for eternity without the fear of what if's ever present on earth.
I have been trying to stay busy this week. I spent the latter part of last week getting all Samuel's video's off this site and burned to DVD so I don't need a computer to watch them. Boy was that a pain and encompassed about a day's worth of time to get them all on and playing right. They actually look pretty good on the TV considering I took them all on my little digital camera. We all sat down and watched them over and over and it really helped with the longing for Samuel. Hearing his voice, seeing him play and have fun helped me feel less alone. Anna really enjoyed watching them and I think they will be good for her to watch over time so that she does not forget him. I have yet to burn the home movies to DVD but probably will this week. Last Christmas was the last video taken and Samuel had the best Christmas ever so I know this will be a gift. Over the weekend, I took all my pictures that have yet to be developed to the store so I could start working on them too. There were about 1,000 pictures that we did not have developed. That was over the past 2.5 years worth. I got them back in a huge box so I have been working on both Samuel and Anna's baby books. Anna's has never been touched as she was six weeks old when Samuel was diagnosed. So I have a lot of things to do with hers. Samuel's have barely been touched beyond the first six months of his life. One is birth to five years and the other is birth to adulthood. Many of the pages will never have anything to put on them. So, it is the birth to death book instead with all the last pages filled with all his duck pictures that I always intended to make into a collage for his room but never had time. I made myself a mini album to carry in my purse and it was really hard to narrow down 24 pictures because there are so many great ones. I am going to make one album with just hospital pictures and other obvious sad pictures and keep them separate from all the happy ones because they are so hard to look at especially now that he is gone. They were much easier to bear when he was here. Each of the kids will also make their own memory book as well.
Mark thinks I am torturing myself looking at all these pictures of my beautiful boy. And he was truly beautiful, even with all the scars. It is slowly sinking in that he is gone and it is a hideous feeling to have to deal with. One of the social workers where Mark works says that he always checks in with parents at the 8 month anniversary of a child's death because that seems to be the worst time. I figure that it must be then that if finally sinks in entirely that they died. And of course, that time for us will be Christmas and New Years so I don't think you can go with the eight month theory since holidays are always hard anyway. He never ate food with us so at least the eating part of the Holidays won't seem unusual. Even eating at the table now is not unusual since he rarely sat up with us. It is just the "everything else" that is lonely. Mark said yesterday that it is very boring here without Samuel.
I have managed to keep my mind off the tormenting of much of Samuel's life over the past week and that has made things easier to bear, if that is possible. Not dwelling on the past sufferings and only dealing with the "missing him" Is easier. I continue to think of his last month on earth though and sob. It is amazing how quickly the riding a mile on the big wheel turned into a fentanyl drip and total gut death. The pictures on this page are killing me and I will be archiving this page soon. The pictures I took from May 5 and 6 where he was busily getting everything he needed to do done leaves my emotions confused. He did all that for me. It seems like God woke him up and told him to spend every last second with me, color me everything he could because it would have to last until we meet again. On May 5th, he never took a nap. That was the day he was supposed to go to sleep and not wake up. He wanted me no more than two feet away at all times and he colored, visited, watched TV, talked to us all about Heaven, food and said he would check on us every day. When I got out the camera, he promptly sat up and gave me all the smiles he could even though he was still hurting. He did it for me. He tried to seem as "normal" as possible for me. And you can see all the edema in his face, he was not normal. Far from it. And yet, he spent that day with me. Made everything for me. We hugged and kissed and I cried in his lap. He left here knowing how much we would miss him because we grieved for him, in front of him, for weeks. On his last days he was still trying to spell words and read. He was telling me to find him a "three horn" costume for Halloween on ebay. He was anticipating his birthday party as soon as he felt better. He was still talking to Kaysha about making his cake. And he could not even eat. And then there is that last picture, the one where he looks perfectly fine. No one knows how I even got that. Coloring his last picture, one of my favorite Pokemon. Coloring it for me. He even got off the couch and sat on the floor to color that. He was still walking on that day to go to the bathroom because he wanted to be a "big boy." I don't know what to do with these particular pictures now. I am glad I took them and they really show his spirit true but for now, they just kill me. His beautiful face in these cannot hide all that is wrong. You can see it by looking at him. And yet, he is smiling. For me.
Mornings are hard. Especially if I wake up between 5 and 6am. I just remember his last moments. So I try to sleep in now because I can. The memories are getting a little easier to bear, but even so, I am haunted by them. Dealing with his pictures from happier times is helping wash away the tears from this. Late nights are also hard especially if I am up alone. When Samuel was feeling good, he would stay up with me. Until I went to bed. He was my buddy. I never stayed up late alone unless he was doing better because when he was doing poorly, I was way too tired and went to bed with him. It has hard to believe he has been gone almost three weeks. Time seems to be passing quickly somehow and I think it is because I actually get to sleep through the night now. For the past several years, I would get up several times a night to help him get to the bathroom, or change diapers and that was on a good night. Then there were those other nights where there was no sleep and one day for me was really several days combined. I enjoy sleep. I haven't dreamt of him much though which is highly annoying. You would think someone you think about all days would be in your dreams. But no, last night I dreamt of how much I miss him. That was NOT helpful.
Going places without him is easier now that we have done it several times. We are still running into people who don't know and that is hard. Mark tells them. I walk away. We got together with some old friends over the weekend who were camping nearby. I haven't seen them in a year but we have known them since before Kaysha was born. We had a nice time visiting and they had all met Samuel. So we talked and we cried and it was actually nice even though it was emotional at times. I think it helps if I am not the only one in tears. We were able to stay and visit for hours because "we could." There was no one who needed special things, special food, four trips to the bathroom or was hurting. Over the past weeks, one really obvious thing is how easy it is to go somewhere at a seconds notice, how easy it is to stay for hours without a problem and how much free time there is in a day. So much has been robbed from our life without Samuel and yet so much was robbed when he was here. It was robbed from all of us and most of all, from Samuel who was always hooked up to something, hurting, and had no freedom.
I want to share with you some things I wrote in Samuel's baby book. From 7/4/2002 when he was less than three months old, I wrote, "You are my gift from God. Only He could love you more." From 8/18/2002 when he was almost four months old, I wrote, "You are the sweetest man! I keep looking at you and cannot believe you are mine. You seem so wise, so happy and love it when I talk to you. I hope it will always be this way. I love you so much. You are growing way too fast." Everything I wrote was and is true to this day. I am so lucky and blessed to be his mother. Whether he be here with me or in Heaven, I am blessed. I was chosen to take care of a very special soul who gave me more in six years and 17 days than most people give in a lifetime. How I love this child! Usually you make baby books with the anticipation of the baby growing up and having it one day. At least that is how the ones I have work. Now, I guess I am just making them for me. I always thought one day I would have to explain to an "older" Samuel, everything that has happened to his body. He could read it from the journal entries of this website, see it in pictures and hear it from us. Now, that burden is on God. He can explain it to Samuel. All of it. I wish I could listen in on that conversation. Finishing his book is giving me something to do which fills my time with him. A new labor of love, putting the memories in order, cutting out the parts I don't need to be reminded of daily. One thing the pictures prove, there was a lot of good amongst the bad. That is what I am trying to focus on and it is getting me through the day. A picture is worth a thousand words and even more memories. What is hard to swallow is that those words and memories will now have to sustain us. I will never take another picture of Samuel. How can that be? I am just glad I took so many when he was here.
Mark has been back to work a week now. I think it has been easier for everyone around me to function because they did things without Samuel much of the time. Mark has been his usual self, just perfect, telling me to "Do whatever makes you happy." So I have been. Trying to find projects that don't hurt so much and believe it or not, doing stuff with his video and pictures does not hurt as much as the scenarios that play out in my mind in those quiet hours of the early am or late pm. As always, I continue to draw near to God because there is great comfort there. Truly there is nothing else that comforts more than the presence of God. Nothing more comforting that knowing that one day I will be reunited with a perfect Samuel. The wondering of how long I have to wait is hard. Is that going to be a few years or ten. Twenty? Thirty? Forty?????????? Oh, that seems horrible. How am I supposed to live with the longing, missing, emptiness in my soul? I know it will improve with time. I have been through death and grieving before. Just not with a child. My child. My baby. I walk around and tell Mark, "I miss Pooper, " all the time. He asks me if saying it makes it better. I don't know. Getting it out helps I guess. I asked him how many times did I say I missed Delma after she died. He remembers a lot. Says I still do. But I don't do it every day. Now that Samuel is with her, I probably won't miss her so much. I keep getting little reminders of Delma. Just a few days back, I was cleaning the desk and a few cards from her fell out of a book. I did not even know they were there. Hadn't seen them in years. I haven't seen or gotten any more signs from Samuel though. I imagine he is busy playing with animals, running Delma into the ground. Good thing she has a new body! I imagine all the children there, who suffered a similar fate as Samuel are exchanging stories as they watch over their parents. They are probably still getting used to life without feeding tubes and ports. I am certain it is nothing less than pure joy. I think of all the food he must have eaten by now. I really hope and pray that Delma had a huge birthday party for him on the day he arrived and that even the dinosaurs came. I am certain the ducks and birds came too. I know he is loved because as I said in his book, "Only God could love him more than I." And after my love, there would be Delma's. he is covered well.
We want to continue to thank those who have sent notes or cards. I have a nice pitcher full of cards and letters in the kitchen and I read many of them over and over daily. You would be amazed how God speaks through your words and you did not even know it. I will treasure these forever.
Thanks also to those doing raffles, auctions, etc. for our family. Thanks to the ladies of Hyena Cart who have donated, sacrificed, and given of themselves to ease our burdens. I am sure there are other things going on I don't know about so thank you all too.
Some other cool things to mention. There will be a mass for Samuel in New York City on June 3rd. If you want to attend, please e-mail for details. I don't live in NY but one of Samuel's "friends" does and we appreciate the gesture. We haven't decided on a service at this time so this will be the first.
Also, a tree was planted outside of Jerusalem in Samuel's honor. Thank you. We think that is awesome! I know he would have thought that was cool as well.
Thanks to those who continue to check in, pray and think of us. We are doing what we need to do to get by. One day at a time. It is not easy, but then none of this has ever been easy. Knowing that Samuel is free, not suffering and watching over me, helps. Sometimes more than others, but it helps. Praise God, we have victory over death. Samuel was reborn into the Kingdom on 5/8/08. That helps.
5/20/08
The days continue to be roller coasters of emotions. I feel like we were snatched out of our normal lives some four years ago by a monster which has been chewing us and chewing us until such time as it spit us out and devoured Samuel. He is gone from us and now we are left to figure out the aftermath. And the question I am left with is "Why did it have to be so awful?" All of it. Start to finish. Everytime we thought we were getting somewhere, that we might escape the monster, we were sucked back in and chewed up some more. The pluther of awful memories of the past four years is so encompassing at times that I have literally hit my knees in tears for the long suffering of Samuel. The joy of his restoration in Heaven is sucked out of me by these memories. He is healed and free living the good life in Heaven and we are stuck with this? I realized yesterday that the horrible pit of grief I was living is was simply a demonic spirit preying upon me replaying the past over and over until I was a sobbing mess. It is over. Samuel is free. He and we will never have to do that again. Now that I recognize that demonic presence, I am fighting it. I refuse to be sucked in by it. It is a difficult balancing act though, but I guess after this, the one thing I have learned is to balance things out. Sometimes it is literally a minute by minute thing to pick myself up again. Those memories are of past, things we cannot change and I am certain Samuel knows now more than ever that we did the very best we could to make life better for him. He cannot be hurt by any of it now. I remind myself to stop dwelling on where he is not, but remember where he is now. I know that for as much as Mark and I did not want him to hurt while he was on earth, he would not want us to hurt now over things we cannot change. Much less be haunted by them.
In his last month, it was obvious that all of the "quality of life" we had been striving for all this time was not to be. At least not without a miracle from God. And even that would not have lifted the veil of what if's. Mark has said many times that the fear of relapse and what if's have been looming over him ever since 2004. Any family who has lived with cancer will tell you that fear never leaves. It is just another demonic spirit torturing us. Perhaps God knew we just could not live like that anymore. Mark and I knew the very day that Samuel vocally spoke out against being sick that everything had changed. The day he noticed and made clear to us that he noticed he had been sick a very long time was certainly a day which broke our hearts. A day which makes you ask, 'What are we saving him from?" Keeping him on this earth was certain to add more and more torment, pain and disease to his body. Setting him free to go to Jesus meant eternal healing, joy, peace and departure from a body which continued to fail him and in the end, showed us it would also break his spirit if he stayed in it. If you truly know Jesus and believe in Heaven, how can you trap someone in a body like that. And as Mark says, we could have drug it out. We could have tried TPN, more transfusions, oxygen, and the dreaded chemo and kept him here longer. But for what? Selfishness? I could never be that selfish. I would rather live with this pain in my heart than the pain in his body which would have broken his beautiful spirit. The day I told Samuel that only Jesus could fix his body in Heaven was one of the hardest days because we knew that he would have to leave us. It was time. The hardest thing I have ever had to do was to let him go, to tell him to go and certainly to have been there when he exhaled his last breath. I listened to a sermon today which talked about how God breathed into Adam's nostrils to give him life and the pastor went on to say that when you let out your final breath here on Earth, God draws that breath and your spirit back to himself. I felt that last breath. I felt God take Samuel. I am certain the greatest act of faith for both Mark and I was telling Samuel to run to Jesus. Telling him to go to a place we have never been and could not accompany him at the time. Telling our six year old boy to go to a place we have never been, only believe in. To leave everything he has ever known and fly. Samuel's greatest act of faith in us was to listen and follow Jesus. I got a note from my Dad who has been absent from this chapter of our lives but he wrote that "He was sad to hear Samuel was doing so poorly. He knew what a burden it was on me." Obviously, this is a person who doesn't know me. Has never known me and I imagine does not understand real love. Samuel was NEVER a burden on me or us. I would have cared for him and done everything God told me to do for as long as it took to see HIS plan carried out over Samuel's life. We would have given our lives for Samuel to not have to suffer another day. That was not to be. He was done here. God's plan for him on earth had been fulfilled. That said, he was NEVER a burden. He was a labor of love from start to finish. I feel sorry for my Dad to have never known a love like that.
Some people have told us that God will reward us for the sacrifices made to care for Samuel. I cannot think of any physical thing God could give me that would fill the hole in my heart. Material possessions do not satisfy. If they did, we would not think we needed so many of them. I know God truly knows what I need and that void can only be filled with love. I have said time and time again when holidays came and someone asked what I got. "It is not what you have, it is what you do." We know in our hearts that we did amazing things for Samuel. Things no one else could have done. Things spoken to my spirit by the Holy Spirit. I am not happy with things I have but I take pride in things I have done for others. Things done out of love. The love I have for Samuel will never be replaced but I can only think that if there is some earthly reward for all this torment, it will be in the form of some kind of love. I love my husband who is also my best friend and soulmante. I would be lost without him. I love my other children and hope that the bond with them that has been severed a little by Samuel's suffering will be strengthened and made anew. Perhaps one day I will be a grandma and experience that type of love which I am told is even greater than being a parent. Mark and I will have no more children of our own unless God really changes someone's anatomy back if you know what I mean. I know that all our rewards are stored in Heaven and I am trying to stay Heavenly minded so that I can continue to be grounded here. Grounded, not submerged and drowning in sorrow.
Be certain of this, I miss Samuel with every fiber of my body. I ache for his presence, his voice, his love, his playfulness, his brilliance and his joy. Mark went back to work this week and the loneliness for Samuel just eeks out of every part of the house. I just walked through the kitchen and for a split second, thought I needed to check on him because I hadn't seen him in awhile. Then, oh yeah, I guess not. Mark leaving us this week has been a little easier than it was when he left for one day last week. The kids are once again doing school and all those thoughts of what Samuel was doing when we were doing this or that lesson creep in. Anna is playing outside quite a bit either with the dogs or the neighbors and she still has moments where she will just say, "I miss Samuel." Today, she asked if she could wear his coat. Then she said, "Good-bye Samuel, I will see you later," as she walked out the door. Like he spoke to her and she responded. The big kids are doing well. Daniel says he is trying to be "cheerful" for me which is sweet because if you know Daniel, he is not overly cheerful. The kids were doing vocabulary a few months back and Kaysha's word was pessimistic and after she read the definition, she said, "Hey, that is Daniel." He also told me I could pretend he was six years old and call him Sammy. I had to explain to him that God made everyone different and you cannot just replace someone as sweet as the thought was. We will move on, it is just so strangely odd right now. There is no freedom without a price and right now, the price we are paying is a great one. Yet, I am trying to focus on eternity and keep from drowning in the black pool of sorrow because there are far too many supernatural things going on here and I don't want to miss them.
The presence of Delma has never been so evident to me as it has been over the past ten days. I am constantly reminded of her, feel like I AM her sometimes, hear her talk, see clothes in fabrics that look as if they came from her closet. Even the warm air outside smells like her house. The birds outside singing remind me of her and Samuel. The last full day Samuel was on earth, I wore one of Delma's shirts hoping he would sense her presence and that in some way it would be symbolic of the changing of the guardian. I know he would recognize parts of me in Delma for sure because I often do things and think she would have done the same. The raw honesty is definitely a Delma quality. She had no problem telling you the way things were in plain English. The day she died, I told her over the phone that I would make her proud of me. I feel her saying she is proud. Proud of him, proud of us and it is almost like she is wrapping her arms around me telling me she has my precious son and that is is okay. Just busy! I am sure he is tearing up the grass in Heaven with a massive army of animals following him. I was reading a non-fiction story yesterday and did not realize the name of the author until her name was spoken in the story. It was "Haydee." Do you know anyone named Haydee? In 2004, when Samuel started talking for the first time after three months of silence, he called Anna "Haydee." I spelled it exactly the same way. Now there is a name only he and I would know. I thought of it all day. When Anna repeats her prayers to me at night, I always end her prayers with ,"Say hi to Samuel, Amen." He hears her. I have read several accounts of Heaven and what people's names are. Some think you have a spiritual name different than your earthly name. I wonder if Anna's is Haydee. Interesting speculation anyway.
I want to continue to thank those who have been faithful to my request to send cards or letters to me about Samuel. So many notes felt like they were words given to you from God that you put down. They are healing my heart. Other than the question of "Why did it have to be so awful?" I also wonder what the heck GOOD came out of all this. It is hard to see good when you have literally been shaken to the core. So many notes of good have come and it helps heal my heart to see things have happened not just in the natural realm but also in the supernatural. Thank you to those who have done this and those who are going to.
Thanks to the many folks at Valley Orthopedic for the many overwhelming ways you are trying to help. It is amazing that a hospital we have never even dealt with is doing so very much to try to ease our suffering. May God bless the many different departments who have donated and offered support.
Stacey E. Thank you for finding a person who could make Samuel's most special picture for me a real piece I can wear. I don't know how you found this person or knew to do this. Must have been God. I also know you wanted to remain anonymous but this was just WAY too special for me to not know a name. There is just one special picture Samuel drew to thank me for helping him and it brings me to tears to think that it will be made into something VERY special and last a lifetime. I cannot wait to wear it. God bless you for doing this.
Thanks to those who continue to check in, think of us, pray, send encouragement, and sacrifice time, effort and cash so that our burden may be lighter. Many have written and ask if I will keep the updates going. I suppose I could just get a private journal and keep this to myself at this point, but I cannot read my writing anymore so that probably won't work. So I will keep this site going for a time but will probably change it a bit as Samuel's Update are now from Heaven and not from me. We send our love and pray God blesses all who continue to read and love us.
5/17/08
We want to continue to thank everyone for their love, support and generosity. We are overwhelmed with the outpouring of love and support. We have received many cards and letters this week that we will cherish forever. Many from people whose names we recognize who have followed Samuel's journey from the very beginning and many from people who have just "met" Samuel through this site. Thank you to those who have donated to Samuel's Medical Fund and have done or are doing fundraisers on our behalf. We appreciate everyone's efforts, sacrifices, time and generosity more than you know. And finally, thanks most to those who continue to pray for us. The days are so hard.
My Midwife calls the two week period after the birth of a child "The Black Hole." Everything changes and things feel chaotic until all family members settle into their new places, routines, etc. And for Mom, well, there is just more to do, nursing, changing diapers, staying up half the night, etc. It is all an adjustment and things just feel a bit crazy and off for a little while. Mark has referred to Samuel's death as birth in reverse and I can tell you that this is definitely the Black Hole. Only in reverse. I am sleeping for the first time in years. I am not up all night caring for someone, changing diapers, soothing them, cuddling them, or loving them. We just sleep. When I get up, there isn't someone who absolutely needs me to help them start their day. This house and it's occupants run on their own now. There is no monitor on so I know when Samuel is up and needing me because he cannot walk without help. There is no Land Before Time music playing in his room non-stop. Instead of a new life, there is a loss of life. There is a Black Hole. Getting used to a new life in the house is a lot faster and easier than getting used to a life lost. The emptiness I feel and sense are overwhelming that it literally does hurt to breathe.
I never left Samuel except when I was forced to. Either by surgery, sedated procedures or very early in 2004 when we were not allowed to stay in the ICU with him. Other than that, I never left him. I never went anywhere without him. If he could not go out, we stayed home. This week we went to Fred Meyer. The first time I have been there without him. Mark thought everyone would know without asking then because I never left him. It was a very sad trip to the market. I know there will be many more trips like these. Yesterday, we took the kids to Seattle to visit the Aquarium and take a Ferry ride. They have literally not been able to do anything fun with us in years. I missed Samuel so much. I saw little two year old boys with their parents enjoying all the sea creatures and thought of Samuel's life being snatched away at that age. After he turned two, all we had to look forward to was a vicious cycle of surgeries, 20 or so in less than six months. Fighting for his life, dealing with people who claimed they never saw anything like what was happening to him. I looked at these little boys and realized all that has been stolen from us. While the kids seemed to enjoy the outing, I cannot say that I did.
I looked up into the sky and knew that he is free from all this now and while that helps a lot, it does not fill the empty Black Hole. It does not seem to stop the neverending vicious cycle of horrible memories of some pain he endured or some long period of suffering he went through. I seem to just have flash back after flash back of some horror. And yet, while this pain feels unbearable, the memories of 2004 and that horrendous roller coaster ride was far worse. Not knowing if he would survive, if he knew who we were, the comatose state, all those surgeries, never knowing if he was hurting because he could not communicate, being told he was going to have brain damage, complication after complication, never knowing if he would ever come home. And worst of all, those times when I had to leave him. Those days when Mark and I changed places for a little while. Not knowing if he understood any of it. Leaving him and the worry and torment of that was MUCH worse than this. He was a little baby then. Yes, that was worse. At least now I don't have to leave him. In reality, he has left me. He had to go. That is obvious. We could not go on like that. That is obvious. God ended it. The aftermath is still horrible.
All these "fun" things we can do now were things we longed to do as a complete family. Not a broken one. We are doing these things for our children, not so much for us at the moment. They deserve to have a life now. But for me, it is so hard to move forward without the one I never left. I am certain he is watching. I don't think you can spend that much time with someone and just go to Heaven and lose interest. I know he is watching us all. But it still hurts, it is lonely, empty and cruel.
I spent a little time sewing this week. I would look at the place where Samuel used to sit and visit with me while I worked and he colored, sang songs or watched TV and tried to keep my tears off the merchandise. He was the inspiration for that business. Without him, it would have never been. He used to love to look at the carriers before they shipped. All these things made his life better. I have to move on. I know that. But right now, there is no joy in it. To be fair, there is not much joy in anything. I know one day, there will be joy again, but for right now, everything feels wrong. For now, nothing helps....for long. You can try to stay busy, but the pain finds you. I wish I could go somewhere and get away, but you cannot hide from the pain, run from the pain or even pretend it is not there. It is there. I wish I could think of something that would h
