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!