Held

I guess you could say I did a little exposure therapy on World Down Syndrome Day, March 21st. I went to an appointment with my friend for her little girl,who I'm absolutely in love with and grateful for, at the downs syndrome clinic located at the Texas Children's Hospital. I really thought it'd be easy. I thought I'd love seeing all the babies and children with DS. I firgued I might get arrested for stealing a baby, but nothing too bad. I was wrong. I almost hyperventilated sitting in the little exam room. The only one with DS there was my friends baby. They didn't know it was world ds day! I guess the thing that got me was imagining what Jack would be doing and the hospital itself. The sick children and worried parents were all too familiar. I'm glad I went. It helped make me deal with a few things, but it was definitely harder than I expected. The hospital was one that denied Jack and I couldn't help but think about our days in the hospital. I try hard not to think about those days too often. The smells and faces were a lot to take in. I can't believe I'm one of those parents I saw there. They have hope and fear all over their faces. Hope that things will improve and fear of the possibilities. Tonight, as if on cue, I got in my car to go to get ice cream after a long day and the first song on the radio was,"Held," by Natalie Grant. It's one of the songs we played at Jack's funeral. That's also a time I try not to think about too often. I cried like my heart was broken all over again. I couldn't turn it off. It made me start thinking. This song is perfect. I remembered why I chose the song and why I still pray. "Two months is too little, they let him go, they had no sudden healing. To think that providence would take a child from his mother while she prays is appalling. Who told us we'd be rescued, what has changed and why should we be saved from nightmares? We're asking why this happens to us who have died to live, its unfair. This is what it means to be held, how it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was that when everything fell we'd be held. This hand is bitterness, we want to taste it and let the hatred numb our sorrows. The wise hand opens slowly to lillies of the valley and tomorrow. This is what it is to be held, how it feels when the sacred is torn from your life and you survive. This is how it feels to be loved and to know that the promise that was that when everything fell we'd be held. If hope is born of suffering, if this is only the beginning, Can we not wait for one hour waiting for our Savior? This is what it is to be held, how it feels when the sacred is torn from your life and you survive.This is what it is to be loved and to know that the promise was that when everything fell you'd be held." I heard this song all the time before Jack was even born. I finally started turning it off when it came on. It made me cry and I really didn't understand it. I understood what it was about but I couldn't understand why God would allow such a thing. I was also scared that I wouldn't keep my faith if that happened to me. I prayed that'd I'd do the right thing and turn to Him, but it scared me. I didn't know if I'd be able to praise Him in this storm so to speak. Now I know. I knew when I picked this song. He's all we have and whether we know how we're going to react to tragedy or not He does. Maybe this song was a way to prepare me, who knows. I'm just grateful for knowing Him. I'm grateful for the promise, whether its a good day or bad day.

Life in the midst of grief

In the midst of grief life goes on. I didn't know how this was possible. When Jack first passed it seemed crazy to me that the world was still spinning. It was crazy to think about the rest of the world going on as usual. I suppose I thought things should stand still, at least for a little while. Now I see. Now I see that you can't stop life even after you feel as though the pain should literally kill you. Life doesn't work that way. The nature of life itself can't stop until the Master commands it. Now I understand. I've understood for a while now, but its taken time. I was watching the kids play in the yard the other day and it was so beautiful! The day was beautiful, the children were intoxicating with their laughter and play. I sat there thinking about how sad and happy I was feeling all at the same time. I realized I could do both. Sadness doesn't mean your life has to stop. It can't and won't! All the while there's too much life and blessings to enjoy. Tomorrow we'll be having a birthday party for my baby Clayton, my sweet girl Emma, and her half brother David. These sweet lives deserve all that I have to offer. I've realized that I won't ever quit missing Jack. While the sadness isn't as suffocating, its still there, but it doesn't have to stop me from enjoying the lives I have left to celebrate and cherish. God is so good.I can't imagine my life without Him. I know I wouldn't be seeing the clouds part at all without Him. Happy birthday Emma, Clayton, and David, I love you babies!

Those People

I know its been a while since I've posted anything, but the two month mark was hard for me. I didn't see that coming. I guess the more time that passes, Jacks death becomes more real. Things are slowly taking on a new normalcy though. Our new normal has sunk in. I visited Jacks grave for the first time week before last. To say that it was hard is an understatement. I couldn't believe a little tiny grave is now a very real part of my life. I just never thought I'd ever have to visit one of my babies in a cemetery. Not that he's actually there, but it made him seem closer and it made his death real. The surreal has passed and reality has arrived in the form of an actual grave site. I don't really know how else to describe it. I had myself a very "real," breakdown as well. My freshly tender wounds that were beginning to heal were torn wide open. My heart seemed to break all over again. I cried tears that I didn't know I still had. I really believed I couldn't produce anymore. Here I was again as, "one of those people." People who we never think we are. The people that the unbelievable strikes at. The people who are hit with bad news. People who are steeped in tragedy. I never expected to be, "those people." I guess, "those people," never expect it either. I always thought we'd always be the ones that said, "that could never happen to us." We don't become those people until it does happen to us. Standing over that tiny grave all I could think was that I never expected to be here. I never thought something like this could happen to us. The reality of the whole situation came tumbling down on me right then and there. We take for granted the blessings that are bestowed to us. We can't imagine tragedy touching our lives. Why not us? Somebody has to be, "those people." Looking at things from this perspective makes me realize how arrogant we are as human beings. God is the only one in control. We try to plan and control our lives to such a degree that we forget whose plan counts. Then when tragedy strikes we blame and question God as if He doesn't know what He's doing! How foolish is this when you really think about it? We can't just be happy with God when He allows our plans to work out. I'm not happy that my son is gone, but I am grateful to have learned this very hard lesson. We can all be, "those people," if we let ourselves depend on our plans and not just trust His.

The Day God Took You Home

Jack had a really wonderful program for his funeral. It had so many wonderful poems. I'd like to post this one tonight because its really fitting for the way I'm feeling. "In tears we saw you sinking, and watched you pass away. Our hearts were almost broken, we wanted you to stay. But when we saw you sleeping, so peaceful, free from pain, how could we wish you back with us, to suffer that again. It broke our hearts to lose you, but you did not go alone, for part of us went with you, the day God took you home." There's a huge part of me missing. I'm just glad to know its with Jack. I'm so blessed to have had such a special little life entrusted to me. I'm so grateful God chose me and Kenneth to be his parents. Even if I knew the outcome beforehand, I still would've chosen him. I'm so grateful for my children that our still with us. God has blessed us beyond anything we could ever deserve! Kenneth and I were watching videos of Jack tonight. I can't begin to describe how good it is to hear him and watch his little smile and sweet tongue! How could we feel anything but blessed!

Breakdown

This post seems really personal. You know how one of the things your told to do when making a speech is to imagine everyone in their undies? This feels like vice-versa! Recently I had a major breakdown. I guess I hit a breaking point. Things just seemed to be falling apart. My husband and I were grieving our separate ways. I know we should've been doing it together with Gods help, but somehow things got messed up, misunderstood, and totally wrong. When Jack first passed it seemed like we were going to be a stronger family for it. I know for a fact that's what was supposed to happen. I know God uses the bad to make something new. The enemy also knows when to creep in. Since my breakdown my husband and I went to counseling together. It was so precious, and everyday since then has been as well. God again used something bad for good. I love Him and just stay in awe of Him. The lesson is to stay vigilant! This is such a vulnerable time for my family. If we don't keep our eyes on God we will fall apart. The day of the funeral I just knew we were going to come through the fire just as God had planned. Blinded by grief we all lost sight of this. I'm not saying I'm not sad. I'm not saying that we won't have anymore rough patches, we're all human. I am saying thank you to the mighty God I serve for my breakdown. I'm thanking Him for the wake up call to my family! Greater is He who is in me than he who is of this world!

Hope

" I had heard about you before, but now I have seen you with my own eyes." Job 42:5 This verse struck me profoundly. I'm in no way comparing myself to Job! I've been skimming through this book called, God in the tough stuff. I've been telling people about how blessed I was to see Gods hand just about everyday. It's so true! I know I'm grieving right now and forget so easily my experience with God when Jack was in the hospital. I felt so blessed, no matter the outcome, to be in the midst of His presence daily. I would thank Him for showing His self so clearly. I finally feel that the clouds are parting! My hope comes from the Lord, maker of heaven and earth! I praise Him in this storm and thank Him for being my rock and my fortress!

I Know

I know its been a while since I posted anything. I really don't know what to write. I feel like people have got to be tired of hearing about how sad I am. I'm really tired of myself being sad! I'm tired of waking from dreams of babies and Jack and death. I'm tired of going about my day and all of a sudden bursting into tears. I'm tired of crazy thoughts and pretty words. I know my son didn't die for things to start falling apart. I'm ready to fast forward to the day when everythings ok. When the sadness has passed and we're all celebrating instead of mourning. I know all the good things. I know he's in a better place. I know God has a huge plan for our family. I just wish my heart would catch up with my mind.

Avoidance

Avoiding grief doesn't work. The last couple of days I've been trying to avoid the grieving process all together. I usually have at least an hour out of the day set aside to look at pictures, write to God or Jack, or all of the above. I haven't had the energy for it over the last couple of days. I learned quickly that this is a bad idea, and just flat out doesn't work. The fact is its going to happen whether you want it to or not. The controlled time period set aside is necessary. Last night I decided since I was in town I might as well stop and thank a couple of the night nurses who took such good care of Jack. He worked those poor ladies ragged! This turned out not to be a good idea. I thought since I'd avoided crying for the last two nights it would be ok to face my demons, so to speak. It was completely surreal. I really can't even remember leaving the hospital. I remember trying to avoid looking at his room or breaking down in front of them. Needless to say I cried the whole way home. I stopped a couple of times to try to get myself together. It was like a flood gate had been opened. Not only did I cry over the visit but whatever I'd been holding in over the last couple of days came pouring out. Obviously I wasn't ready for the hospital visit, even though I truly loved seeing those familiar faces. Those faces that shared such a hard part of my life with me. They helped me more than I can put into words. They not only took excellent care of my precious man, but befriended me in my hour of need. Ready or not seeing them was in a way comforting. I did learn that avoidance is not the answer. Dealing with grief is so painful, but avoiding it is detrimental. Lesson learned and I will be doing my hour of sad time whether I feel like it or not!

Missing my lil man

Wow,when I look at him it's hard to imagine waking up to another day without him. I think of that song, "Hug him once for me." I hope Jesus and my Pop are squeezing him as tight as they can, and kissing those puffy cheeks! I would do anything to have one more day with him. One more day to squeeze and kiss and smell. I also know that one more day would never be enough. I'd want more and more!I guess for now I'm just going to have to be content knowing how happy and whole he is, and knowing I'll get to see him again one day! I love you lil man and momma misses you!

Today

Today is not a good day. They say you'll have good days and bad days. I'm not sure if that's true so far. I have bearable days and bad days. That might seem like a downer but that's what I have right now. I've been thinking about our stay at the hospital. The first 3 weeks in Lake Charles seem like a lifetime ago. Their was so much hope then. Even when it was really bad it never seemed like death was a possible outcome. The next 3 and a half weeks in Little Rock seem like just yesterday and I'd give anything to go back there. They were mostly days of anxiety. Days of ups and downs. Days of staring at machines and praying for sats to go up or medications to work. Those days and my stay there seem so much more normal than life at home does. I want to go back in time where my baby was alive. Where my world revolved around Jack. It seems like just yesterday sometimes and other time it seems like forever. I can't get those last moments out of my head today. I keep thinking about what if I just would've refused to take him off the machines. Even though I knew what was right and best at the time, it doesn't seem so clear now. Now I would do anything to have him here. Even if it was in the hospital. I miss him so much that nothing seems clear anymore. What ifs are running around in my head like crazy. Those last moments of his life are tattooed on my brain. How did we make it through that? How did I sit there and feel his heartbeat stop without losing my mind? How did I not scream out for them to resuscitate him? How did we decide it was time? How did we not lose our minds the day before knowing our baby would die the next morning? I really don't know how I ever let him go. I know the day before he died I kept wondering how many people actually knew the day their child would die. I know this post is depressing, but its what's on my mind today. I've been avoiding thinking about this since he died. I've pushed it to the back of my mind every time its even tried to peak its head out. I guess I can't avoid it anymore because it won't go away today. I still can't believe it. I still can't comprehend how I made it through. Other than God giving me supernatural strength, there's no other explanation.

More Jack

I could go on and on about Jack. He truly was incredible. His tongue was always out, and I loved it! When the lady from EI came to evaluate him I was so excited that he would copy me when I stuck my tongue out of course this was the first thing as a proud mommy that I had to show her! Her reply totally let the air out if my balloon. She said,"oh, we'll work on that tongue protrusion." She was sweet about it and of course she was right. I really secretly didn't want his sweet tongue to stay in his mouth. It was adorable! Plus it helped with the slobbery kisses. I pushed for EI with our pedi and I pushed for his ssi. I was always trying to make sure we did everything by the book and give him the best possible chance of growing on track! Again I had big plans for him and our family. I would daydream about me going to school with him and about his big brothers being his role models. Also, I would dream about his big sister growing up to be an advocate for children with DS and other special needs. I would dream about him when my new friends baby girl(also with DS), growing up together, getting jobs together, helping each other, and yes getting married. I made some of the best friends I could've ever hoped for through Jack. These women also had big plans for Jack! Isn't it funny how we plan things and take for granted that they will happen as far as we're concerned. How can we be so egotistical? God put me here, he put children in my care. Instead of surrendering our children to him and knowing His will will be done, we put all our faith in our plans. I'm not saying that we don't try to do this. I've prayed a thousand times your will be done and not mine. I've told Him that I know my babies are His to give and His to take away. Well a two month hospital stay makes you think and pray a lot. You get to find out how strong your faith really is. I would surrender Jack to him over and over again, but I truly found out how hard this is to do. Even as I would pray this and for His will to be done, secretly I was praying to change the heart of God to bend to my plans and wants! I'll post next time about Jacks medical issues and about our stay in the hospital. Right now though, I just want to say that in my short experience of loss so far I've had to really concentrate on Gods will. No, it was not mine but here I am. The world is still spinning even though I thinyk it should stand still. I feel like the whole planet should be shaking with grief. I know I'm not the only person suffering, but right now it sure does feel like it. It feels like I'm an outsider watching lives go on. I keep moving and taking care of my children. I'm still here waiting for the clouds to part. I have faith in God to carry me and my family through this. I know and have faith because He promised! I know I'm rambling and not going in the right order but this is just the way its coming out.

Still About Jack

I meant slobber not skinner! I'm sorry to leave that post somewhat unfinished, but I think that's all I can handle for tonight. I'll write more about Jack soon and continue our story. God bless!

About Jack

Ok, please be patient with me. This is the first time I've ever done a blog and honestly I don't much about it. I've felt the need to share my story with everyone because my eyes have been opened to so much throughout my time with Jack. If this blog helps just one person, other than myself, then its well worth the effort. Jack was my fourth baby, my third within three years. He was born with Down Syndrome. We knew I had a higher percentage because of a screening the doctor did when I was almost 5 months along. Although the chances were higher, everything looked normal on the level two ultrasounds we did. We were reassured and the pregnancy went fine. He was born almost four weeks early and our biggest concern was the fact that he was premature. The DS possibility was in the back of my mind, but he looked perfect, even if he did seem a bit floppy! While we were in the hospital the doctor told my husband he wanted to go ahead and have him tested for down syndrome, due to the fact that my screening was abnormal and he had slight features of a downs baby. When my husband first told me this I was outraged! My baby was perfect and healthy and beautiful, how dare he! In the back of my mind though I knew. I knew when I held him he felt different. I noticed some of his features were different. When I say different I don't want you to get this grotesque picture in your head. I mean he was beautiful in a way I can't describe. The way he looked at me was as if he had known me forever. I was head over heels for this baby immediately! My mind couldn't grasp that this angel could have anything "wrong" with him. We went home with a cloud looming over us. Instead of going home happy and ready to celebrate, we went home to hide. It was as if everyone who saw him during our first days home were trying to determine for there selves if he had "the features." I think everyone had their own opinions. I didn't want to hear any of them. I had decided as long as he's healthy nothing else matters. The day the phone call came I learned the difference between possibility and reality. The test results were back and he had trisomy 21. I let out a guttural cry as soon as I Hung up the phone. Not my baby, not us. In the days that followed we cried and researched everything available on the internet about trisomy 21 or Down Syndrome. We knew our lives would never be the same. Jack meanwhile was the perfect baby. He never cried and slept more than was normal. When I first noticed how much he slept I was convinced he was an angel. My other babies were always demanding. Now sometimes I wish he would have been more demanding! We entered the world of special needs full force! We found out he had down syndrome when he was a week old. We brought him to a routine visit with the cardiologist at around two weeks old and found out he had two defects. I was so mad! I prayed that all I wanted was for him to be healthy and now this! He was able to take medication and wait for open heart surgery until he was 18 to 24 months old. Those days were up and down. One day I could accept everything and the next I was overwhelmed by this unknown world. During all those ups and downs I never thought for one minute any of it was a mistake. I knew God had plans for Jack and our family, but I wanted a peek into the future. I was scared of what might be coming our way next. I know God works in mysterious ways and what we have planned for our lives is not always what God has planned. Praying for God to guide us and his will be done was all I could pray. I had to learn to take it one day at a time, one hurdle at a time. In this world of special needs I met people and became aware of things I never would have without Jack. He was so special. He loved to be talked to. He would open his mouth and try so hard to talk back to you. His smile was gorgeous! I've never known a more social baby. Whatever he lacked in motor skills and muscle tone, he made up for with his social skills and affection. He always wanted to kiss and skinner all over me! I can still feel that sweet, wet breath on my cheek!