Embrace the Journey

     Aha, it’s a new year filled with so many possibilities, and promise! For me, it’s a year that hasn’t been contaminated with hospital stays, 6 daily medications, questions I can’t answer,special formula that cost a fortune,   and tears I can’t find the end to. From Aug 2008- through half of 2009, the things mentioned above are a few of the things that consumed my life with my precious son Micah, who was born a month early with down syndrome.

     The new year was here (Jan 1st or close) and I was driving to target for  all the things I really didn’t need.  Often when I’m driving to target I find myself thinking and contemplating some of  life’s issues. I guess I do this because there are NO kids fighting in the back seats, talking at the same time, or screaming I’m hungry can we get Sonic.  Fresh thoughts ran through the fields of my mind. Wow, I’m okay. I made it through the rough part of the year, and I’m really okay with Micah and the down-syndrome issues. I pondered on all the feelings I deal with, and had dealt with, and took in a deep breath For the first time in my past 30 plus years, my first thoughts of my new year were NOT how much weight I need to loose, or all the goals I need to jot down. My first thought were on how I was going to fully accept God’s plan for me in regards to having Micah, with no more tears, only joy because I had made it through the previous year. Now I will be honest, shortly after that refreshing jubilee of new years resolutions, a big old Jillian’s (you know the biggest looser trainer) voice and vision  seized my new resolutions and shouted out in my mind the perpetual never ending new years resolution… I will loose this weight this year!(but it wasn’t the first thoughts, I’m making progress). So with my new attitude and pep, I’m on my way to a grand, no crying, no appointments, no meds, new year with Micah!

     As I shopping at target, I run into a old coach from my younger days. He knows my family, and always ask how we all are. I tell him of all my kids and the newest little guy Micah. Him and his wife are all smiles and oh, how sweet another baby, you must be busy, all the normal things you hear when you tell someone you had a baby. But then, it was like the lights went dim, thunder rolled, and I turned into the barer of Awful news. I told them that Micah the new little guy had down-syndrome. Immediately a breeze flowed between us that left a cold and uncomfortable feeling . The body language changed from comfortable, to uncomfortable, from we have lots to talk about to , I can’t look you in the eyes, time to go look. Then like a avalanche over taking me, I hear the words… We are so sorry! I of course being blindsided by this response,I went into Auto pilot, explaining that God has a plan, and we are happy to have Micah. All the things I meant, but feel like I’ve been programmed to say. They just looked at me and nodded, and said, well its nice seeing you..and strolled off.  I couldn’t believe what just happened to me. Tears filled my eyes, sadness overtook me, but yet, once again. I had just proclaimed that this year, I was going to be positive, not cry, etc. That already has gone out the window. I hurried to get out to my car, and as I opened the door to my car, I  opened the floodgates into my inner most being and sobbed. What was I sobbing for? I was sobbing because, although I know people don’t mean for their words to hurt me, they do. I sobbed because I have had 3 other children before Micah, and I NEVER heard,” I’m sorry “after telling someone of their birth. I cried because I have never been in a situation that something I said would cause so much discomfort and coldness  in another human being. Once again, I felt I was left standing with a broken penny bank scattered all over the floor, that I had worked hard to put back together the previous year. All this because of a comment, “We’re sorry”. If I’m honest, I will say, that my sorrow went to anger. Anger that I allowed myself to be upset over such a comment, when there are far more worse things in life. Angry that people would respond that way to the news of a child born with down-syndrome, which implied to me a child not born what we consider perfect should be pittied? Angry again at God. How could he put me in this situation of always feeling defetead, weak and unprepapred. Angry that God hasn’t given me all the answers I still wonder about. I cried out, I yelled, I pleaded with God to speak to me. I pleaded with God to change the way people see imperfections. ( Just becasue I was angry at God for the moment, doesn’t mean I ever blame him or stop loving him. He actally drew me closer.)

     After all the emotional let down and melt down, I realized something. I thought I had it all together. I MADE it through, and all my plans were finally going to be back on track. God brought me through, give him glory and move on! No! I think we sometimes think we surrendered all our issues  to God, but we secretly hold on to some.  That’s what I thought. But sometimes and most times I believe, the real, real change doesn’t come until you are BROKEN. Not just surrendered, but BROKEN. We will stay broken, if we think that we can fix ourself. We are conditioned to have no imperfections, but we ALL do. If we don’t  let God put us back together, we will remain in a state of brokenness. 

      It hurt me to think that people would be sorry for such a blessing that God has given me. Yes, God does want us to be mindful of how we react to people and what we say. I know that running into that coach and hearing that response, was really more than the response the coach gave. It was a opportunity for me to respond to God, with honesty, and humility. God continues to use Micah to make me a better person. More loving, compassionate, but most of all, more understanding of how much he loves me, and how my imperfections, are perfections to him. 

     So now, I have a new response when introducing my special angel Micah. I will say, God has BLESSED us beyond measure with our 4th child who has down-syndrome.  I will be reminded that brokenness isn’t bad if you allow God to rebuild you with his might not yours.  My”New” new years resolution… Let God decide what he wants for the year:)

         We are approaching Micah’s 1 year anniversary of his  surgery for his heart defect. Last year on Oct.31st I kissed my son goodbye as they wheeled him into surgery. I will never forget that day. The smell of the hospital was so cold and stale, The stainless steel bed that they rolled him in reminded me of a birdcage, with my precious angel trapped in it. People who loved us were there to support me and my husband during this stressful and frightful time. I know prayers  were going up everywhere for a little Angel baby named Micah.  Micah’s first two months were basically lived out in a hospital setting, with me and Robert taking turns sleeping next to his side. My mind was so numb that some of the pain of watching your helpless infant go through so much didn’t sink in at that exact moment. People commented on how strong I was. I didn’t want to be strong. I wanted to crawl into my daddy’s lap and stay awhile. I wanted things to just be okay. I wouldn’t let my mind go to the possibility’s of what could go wrong with the surgery, or the complications after. I remember feeling so naked and exposed. First I had to deal with the diagnosis of Down Syndrome, and then the horrific thoughts of open heart surgery. How could I deal with both of those things at the same time? Why do I still cry when I think about it? Why is there still pain after 1 year? I believe I have these feelings because its all part of the journey God has for me. Sometimes I try to snap myself out it. I tell myself Nina, there are a whole lot worse things. I really struggled(and still do at times) with feeling bad, that I felt bad. I kept trying to wrap my heart and mind around all these feelings I had. Why couldn’t I be grateful for the good things with Micah?  Friends would tell me, Nina it could be so much worse. Look at so and so, they can’t walk. Look there kid has such and such.I realize that my friends really were trying to help. I have said the same things to people. After much thought and prayer though, I have come to this conclusion. Yes there are people worse off, and there always will be. But the pain YOUR experiencing is real, it hurts and it  doesn’t go away because someone has it worse than you. I have allowed myself  to embrace the feeling I have toward the circumstances in which I have been placed. Now, am I grateful… ABSOLUTLEY, but you can be grateful and still live with the pain YOU have experienced.

     So sitting in the waiting room with clusters of other people waiting for the same thing, good news from a Surgeon, you get to know people. There was a family waiting for their son to pull through his surgery. His name was Johnathan. His grandparents were there and friends and family. We ended up spending several weeks with the family because Johnathan spent a lotof time in NICU after his surgery.  God used the waiting room to allow me to experience and empathize with others pain and trials. Micah came through his surgery and the surgeon said he did good but his lungs were bad:(  He told me they would wheeling  Micah though the hallway if I wanted to take a peek because I wouldn’t get to see him for awhile. I braced myself as I saw my little angel being escorted by the surgery nurse through the long hall at UCSF.  It seemed like the longest hallway in the hospital as I waited to get a glimpse of my baby. Life so precious, the life God had given  me. He was covered so the initial shock didn’t occur at that particular moment.  Later we found out that Johnathan also came out his surgery too.

The next morning Robert and I walked in the ICU room and there laid are baby, so swollen he didn’t look like the same baby we left the day before. Every tube you could imagine, coming from everywhere you could imagine. The thing that upset me most wasn’t all the tubes or the big bandage going straight down the middle of his chest, but the apparatus coming from his mouth. The lung, heart machine-ventilator, keeping our little Micah alive. It was taped to his face and we could barley see his beautiful soft skin, and little nose. At this moment I wasn’t thinking about the guy in room 209 who had cancer (I’m being honest), I wasn’t thinking wow, there are people so more worse off. I was thinking about my baby, and the Lord Jesus was thinking about him too!  I was grateful that God had given Micah more days with us, but it was painful to see my child laying between  Heaven and Earth.

They tried several time to take Micah off the ventilator, but he would not breath on his own. It was heart wrenching, and painful to watch him grasp for breath. I had to leave several times because the pain of watching it was unbearable. But I was so grateful to God and the Doctors the day they unchained the ventilator from his mouth.  Micah was reborn, taking in oxygen with his own strength, with the breath of God helping him. Everyone cheered. It was such a happy, overwhelming , joyous day. I no longer take a breath for granted, and it has brought new meaning to me  to hear a new born baby cry after birth.  After a few more days in ICU Micah got promoted to the step down unit, and was doing very well.

     Looking back over this past year and all the heartache, joy, and gratitude that I’ve felt and still do feel, I can see now that is  part of the journey. Over this past year since Micah’s diagnosis of DS, and his heart surgery I have met so many wonderful people. Micah’s life has connected me with people and experience I would never had imagined would take place. There is Joan, the nurse who I never saw in person, but only on the phone. She comforted me at times when no one was physically there to do it. She really cared. It wasn’t a job.  People are good. My life is changed by a stranger, and she will forever be a part of my life and memories. There are all of the other patients and there mom’s that I still  keep in contact with. God has interwoven our lives together with a common bond. I am grateful for these new relationships, and the ones that were part of my life before Micah was born. Along with that gratefulness comes the pain. The pain of seeing the moms mourn the loss of their babies. So many of the babies that had surgery the same week  as Micah have gone to be with the Lord and little Johnathan was one of them. One of the moms I got close to at the hospital had a little girl named Christina who was Micah’s room mate at one point, just went to be with the Lord  last week after living and fighting for a little over a year of her life. It’s a surreal place to be… as I remember and go through the memory books in my heart and mind. I’m grateful to God for giving me Micah, and all he has added to my life, but it also painful to relive some of the memories, and to live out the pain of  embracing the parents who babies didn’t make it. So where does the peace come in all this? I choose to trust a God that is in control, and that has a plan. I don’t understand his plan, or even like it at times, but I hold on to the hope and peace he brings me even when things hurt. He gives peace that surpasses all understanding. In my most painful moments he is there, and in my most grateful moments he is there. He is Faithful. It’s been a year I will never forget:)

Here is a little poem that was put in Christina Vega’s services. She didn’t have DS, but a heart condition in which she had half a heart.

It’s a beautiful day up in Heaven. Jesus is rounding up His tiniest angles, to go live on earth, and be born. One of the sweetest angles says to Jesus “I don’t want to leave, I like it here, and I will miss you. He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus, kneels down and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?”The angel smiles and says, I guess that will work”.But the little angel is still a little scared. She ask, ” Will I be okay with only half of my heart?”Jesus replies, “Of course you will, I have other angels there that will help out, and you will be fine. Then Jesus gives the angel more details about his plan, he says, “When you are born, your Mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart”.Enjoy your time with your family, play and laugh everyday, and when its time to come back to Heaven, I will make your heart whole again”. “Always remember, that you are not broken, just torn between two loves”.

Embrace your journey, and you will find peace.

Nina

        It was a great day Sept 18th, as we celebrated my son’s 12th birthday with a slumber party(His first).  All 4 invited kids, along with my own 4, plus a friend all piled in cars to head for my daughters high school football game. Mason wanted to go to the football game for his birthday, and we actually have a nephew on the team(not blood nephew but very close), so we decided to  watch him play. Not only did we all go, but my parents went also.  It was a fun hour drive listening to Michael Jackson as a child, along with the gang in the back singing back round. Micah was in his car seat grunting to the music, and it was a fine day for a celebration.

     It’s so funny, this past year , I can be going along fine, minding my own business, taking in the sights and smells of the activities  the family is participating in, and sirens go off in my head, I see red flags, and my emotions start to flare up like fireworks. It doesn’t take much for me these days to fill my mind with thought provoking questions brought on by others. I promise,I’m not looking for these things ,they just come to me. Every time I write a post, it’s really my way of “dealing” with it. I’m going to be very honest in this post, because this blog really is for my piece of mind. Even though this is for me, I do hope that someone can relate and be helped in some way by my honesty, and maybe not so politically right thinking.

     okay, here I go,  today I hate teenagers, yesterday I hated the target cashier, and today, I haven’t been out  of the house, so everyone is safe!! ahhhh, that felt good. Really , I don’t hate these people, but I’m beyond irritated with them at the moment. Let me focus on the Friday night football game. All is well, we are sitting in the bleachers, the whole gang is there. Micah is being passed around by everyone, because he is so cute. He is sporting his Blue Harry Potter glasses ( I don’t do Harry Potter, but you will get a visual of his glasses), that wrap around his little head. The glasses really look like cabbage patch kid glasses, but that is so 80′s I use the HP visual. There is a part of me that hates when I put the glasses on him because it causes a lot of attention. The pssst pssst you hear as you walk by  people, the comments you get, like, what does he use the glasses for? ( this is so funny, like he is going to read the football program to us, so we put them on him)People are all well meaning, and I guess, I’m just going to have to laugh and roll with the punches.  So Micah ends up on my daughters lap. We are watching the football game and my friend nudges me and says look ,there is Nick. Now I have seen Nick at several of the games  in the past years, but honestly I was never really interested in him, all I knew was he  had down syndrome and he was just another kid running around the field, who had a brother on the team.  I was never interested in how he acted, how he spoke, or his interest until this night. Now that I had Micah things changed. Now I was overly wanting to talk to him, observe him, and get to know him. He was a connection to the future that Micah may have, that I may have with M icah. He was like looking at a living book on people with down syndrome. It’s as close as I could get to imagining a future for my child with down syndrome. Now, we don’t know the futures of our typical kids, but we have so so many examples that we see daily without even knowing it.  For me, it’s like having the only high tech piece of equipment in a 100 mile radius, and I’m not sure how to use  the equipment  or what it will do, and I happen to be at a football game and someone pulls out the same piece of equipment  I  have. Excitement fills my heart because I  get to see how the equipment works, I will see all the details about the equipment for for the first time, I will  see the equipment work with someone who knows how to operate it. For everyone else in the stands, who cares, their equipment is standard. They don’t have a clue what you have, and they have no interest in knowing, they have  the model everyone else has, so need to learn about the something different. So when I saw Nick , my focus changed from watching football,  to wathing Nicks  interactions, and dealings with others, especially popular teenagers.

     Nick walked by, up and down the front of the stands, yelling and hoot and hollering. Raising his hands like someone excited to be at a football game. Now, I do know that people with Down syndrome learn habits, good and bad, just like we all do, except their bad habits are harder to break. With that said,  I am not sure if what he was yelling was ,”Praise the Lord” or something  a little bit bolder, but still, he was like a 9 year old in a 14 year old body. He approached a group of kids who seemed to be some of the popular kids, girls and boys. I immediatley observed, but didn’t mention this to my friend. An uneasiness  came upon the teenagers.  We really don’t expose our kids to disabled or mentally challenged people. I started to fight back sad feelings as I thought of Micah as teenager and the what if’s that could happen. What will he be like? Will he ???? I don’t really  know what I’m wondering? The kids were looking back and forth at each other with “the stupid look”, mouth  hanging, eyes rolled up in their heads look, mocking how they percieved Nick. No one saw me observing this at the time, and I tried not to draw attention by making the remarks I wanted to make.(Embarrassing my daughter wouldn’t be good, she is shy) I brushed it off and tried to not worry about it. I got Micah and went for a walk with a friend . During that walk I heard several remarks and looks about Micah’s glasses, but again, shrugged my shoulders and took my little cabbage Patch doll for a walk.

     As I walked up the hill to return to my seat, I was greeted by my daughter and her friends.  I could see that my daughter was upset.  Macie then told me how the group in front of her were making fun of Nick and acting “Retarded”. My heart hurt for her. My heart hurt for Nick , and Micah. Honestly, my heart hurt  for me. I’m not proud of this, but I marched over to the bleachers, asked my mom if they were making fun of Nick, and my mom, said yes. I was devastated inside. Teenagers can exaggerate, and maybe not see whats really happening, but when my mom confirmed what my daughter said, and that it was so upsetting to Macie she had to leave, I was sent into dark place for a moment. ANGER, HURT, RESENTMENT, RAGE. I felt these emotions like  a huge wave crashing on the shore. What would I do with these feelings? Well, I’m not proud of myself, but I thought I was in the wild west for a moment, and I stared down one girl with the eyes of fire. If I would have had a squirt gun I may have squirted her. Not one of my proud Mommy moments, but it’s the truth. I can’t believe I,  a 41 year old women wanted to smash the heads of 15 years olds. They are only kids, they are acting like 15 year olds!

      My daughter and I talked. She cried, I cried, how could Christian people be so mean? ( not just Christians either)Well, I’m a adult Christian and I could have beat some teenagers up, so let’s have a little grace. I need to act like a responsible Christian women. I should not have wanted to squirt them, I should have prayed for them(saying what I’m supposed to here!) We are all human, we make mistakes. But what I realize is this. WE need to hold our teenagers, little ones, and those in between ,responsible for how they treat people. There is no excuse for a teenager to make fun of a person who is different. WE the parents are responsible to teach our children, bring them to functions with people who are different than us, and  engage in relationships with special needs  people(and every kind of person) . We need to INTERACT with others. If we don’t teach our children there will be a world of perfection in the future, where if you are not the  perfect looking human, the smartest, the most healthiest, the right sex, and a vast pool of other attributes , you will be aborted. It’s our children who will change the world by accepting people for who God created them to be. Our kids will see the value of all people if we show them the value now. It says in the bible that God knit us together in our mothers womb. Some of us are 12×12 with rough thread, and some us are 32×32 made of silk. We all have value. We should work on teaching our kids how to value all life with its differences, rather than how much money are you going to make when you grow up. We should teach are kids the correct meaning and usage of the word RETARDED, instead of using it to describe our neighbors, or the bum down the street. It is us, the Parents, and the Adults who teach our kids who will help to form the minds and opinions of our future generation. God forgive me for ever making fun of someone. You really don’t think about it until it happens to you. Until you Love someone with down syndrome, or someone with autism, or cerebral palsy. How do we change the world.. Look into your own heart, your own words towards others. Reach out and find someone different to love, and take your kids with you. We have been changed by Micah. There will be pain I know, but nothing worth it is free. I want to love and see others as our creator does.  WE are wonderfully and fearfully made! My husband, myself,  and all my children, will value the uniqueness of all of Gods creation, by being given the opportunity to Love Micah, who will teach us daily:)

     So, I cried after the friday night football game!  But,

Have a blessed day!  Nina

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This post was actually written originally a year ago. I had my baby boy Micah, and he was diagnosed with Down Syndrome. I sent this letter out to all my family and friends. It’s amazing to re-read this letter. Yes, it brings back tears and a flood of emotion. Since we celebrated Micah’s 1st birthday last week, I thought it would be good to remember. Look for following post on how we CELEBRATED Micah’s 1st birthday:)..nina    

  written Aug/Sept 2008

     On Aug 12th, a new journey began for our family. Micah Mitchell Ward was born at St.Joseph’s  hospital. He joined the other three M &M’s, Macie, Mason, and Merrick. Micah was supposed to be born Sept. 16th, but decided he wanted to get out early and meet his new family.  He was delivered by c-section and whisked off to the NICU unit where he would under go test which were normal for preemie babies. A few hours later, I was greeted by a team of medical staff standing at the foot of my bed. The news they brought me was that the journey I had experienced before with my other children, wouldn’t be the the same journey I would be taking with Micah. Shock and fear raced through my every being when they told me that Micah had Down Syndrome. I wasn’t prepared for this journey! I wasn’t strong enough for this journey! Why me for this journey? I’m so scared to make this journey. As I was starting to catch my breath, I was given the news that Micah had an AV Canal defect. Basically a very large hole in the middle of his heart that would need open heart surgery. At that moment I was transported to a place emotionally that I had never visited before. A place that took me off the path I knew. I couldn’t see the path that I would be walking on. I was in a forest of emotion. As a christian I was supposed to be strong and trust in God and his plan. Honestly, I thought at the time that my plan was better than his, and what was he thinking? The time came for me to see my baby boy. I immediately fell in love with this little almond shape eyed baby with oxygen tubes and feeding tubes. He was the most PERFECT baby! Over the past two months I have made my way to a clearing, and stepped on to the path that would lead m on my new journey. When I finally got  to the edge of the forest where the new path awaited, there was someone there to meet me…Abba Father, Jesus Christ. He picked me up and has been carrying me ever since. Micah has been in and out of nicu units here in Stockton, and the University of San Francisco for the past two months, and is scheduled for open heart surgery on Oct. 30. Robert and I will be living at the hospital from Oct 28th until he comes home. Although this will put a stress on our family life, we have been blessed with supportive parents and loving and self-sacrificing friends who will help us. I couldn’t have made it without them, or Robert. Robert is the most incredible husband and father. He has been our family’s rock through this all. Even though I have had to deal with feeding tubes, sleepless nights, nurses in and out of the house, trips out of town, appointments 2-3 times a week, cardiologist, pulmonary doctors, insurance, social workers, 3 case workers, gas prices and the list goes on, I can truly say from the depths of my heart, I AM BLESSED BEYOND MEASSURE! Life is good. God has a plan for Micah, and my family, and I am so , so glad that he chose us for such journey and blessing. I would not change Micah even I could. We are changed for the better, forever. I am now on a new journey filled with lots of unknowns, but, ” I will embrace the journey”, because it was the  journey I was destined and created to take. Embrace your journey, whatever God has for you. God will lead and carry you on the perfect path. Thank you for your prayers and support.  Jeremiah 29:11- For I know the plans I have for you, declares the Lord. Plans to prosper you and not harm you. Plans to give you a hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

thank you and God bless , Nina and Family

A couple weeks ago, I got the privilege of going to surprise birthday party for a young man with Down-Syndrome. Now I’ve been to several surprise birthday parties, there fun and all, but once you’ve been to one, you’ve been to them all, especially when someone is turning 35! It not the big 40, its just one of those, yada, yada, yada birthdays. Well, I’m realizing that since being birthed into the world of Down Syndrome, my life, my experiences, my thoughts are far from what they used to be. I actually look for and anticipate what jewels and nuggets I’m going to learn with the new experiences I’m living out. Aaron who was the guest of honor, came in and we all yelled surprise!!! He was so excited. He was so full of life. He went to every table gave everyone a hug and thanked them profusely for celebrating his birthday with him. This was his first surprise birthday, and it was like a first surprise birthday party for me too.

     Having a infant with Down Syndrome leaves me with lots of questions. How is Micah(child with DS) going to be as an adult? His he going to like to dance, will he talk,  is he is going to be social? I have a list of questions that fill my mind all the time. So at  this Birthday party I was like a sponge,  soaking up all I was seeing. I watched Aaron’s interactions with his guest(who I knew none except 1). I watched his interactions with his family. I’m  always looking for answers to my questions, but often times Im left teary eyed,with  a deeper love for people, and life. God gives me MORE than answers, he whispers some of life’s mystries in my ears. So many times I have had a birthday and I wake up and have a ungrateful, apathetic attitude towards  celebrating another birthday. I’m very happy to be alive don’t get me wrong, but so many times my response to “Happy Birthday Nina”, is oh yeah, thanks, I’m getting old, or oh yeah its just another day! Okay you might be saying oh my, but think back, how many times have you, or have you heard others think  or make the same comments? My 16 year old daughter was with me at the party, and we both learned something that night. We watched a 35 year old man with Down Syndrome, glasses and hearing aids celebrate his life with the joy and heartfelt gratitude for the life he had been given. He danced a tribute to Michael Jacksons Thriller, did the moon walk, while the energy and electricity of life bounced from table to table, guest to guest. He danced with a young lady(also with DS) who had bought a special birthday dress for HIS birthday(when was the last time you bought a party dress to celebrate someone eles birthday) with tenderness , and exuberance. Life was oozing out of him. Aaron then grabbed his mom and slow danced with her to the song by Alabama “God must have spent more time on you”. I cried and looked up to heaven (really) and thanked God that the tender spirit he put in Aaron is a characteristic in people with Down Syndrome.  I also prayed that I would have that characteristic too! To think that a 35 year old still dances with his mom, and its not a wedding, I was touched deeply and so was my daughter. Aaron was excited about each gift he got, and he was excited about life. He did impersonations of Wrestlers, he prayed for everyone, he embodied what celebrating our life should be.

     What did I learn? You don’t have to have a surprise party to embrace your life. Its a gift and we should celebrate it, love it, share it with others. I will never wake up on my birthday or anyone eles with a hum drum attitude. I will celebrate my life, everyday! I will celebrate my friends and families birthdays the same way. Everyday is a birthday if we are alive. Micah is going to have a great life, and we all get to ride along with him!

I’m so looking forward to celebrating Micah’s 1st birthday this Aug, with passion, joy, and exuberance….all the things I learned from Aaron!

Happy life, everyday to you!

Nina

I’m 41 years old, with 4 beautiful kids, a awesome husband and a very busy life. What did God have in mind when he sent me my last angel with Down Syndrome? Micah is now 9 months old, and I thought I had given up this question. In the deepest part of my heart, that thought whispers in my ears at the oddest times. I can be driving down the street after bringing my son to school, or in the line at Starbucks. At night I often awaken to the the calls of “what did God have in mind…” Why did he choose me and my family for this journey? I ponder and pray, and wait for answers. I long to know why. Part of me is still in shock that Micah was chosen for me. I mean really, my famous line to my friends and family was, “I’m not a kid person, and I’m not good with kids”. My second line was IM DONE having them:) Don’t get me wrong, I love my kids to death, but I’m definitely not the person people call to babysit their kids. When I found out I was pregnant(mind you my last child is eight) the first response from my friends and family, was, WHO is pregnant? NO, NO Nina !Oh my !I’m laughing as I write this. So, again, what did God have in mind? I don’t believe that we will have all the questions answered, of why did this happen, or why me, because frankly, God is God and he can do what he wants when he wants, and he doesn’t answer to us. Although God doesn’t answer to us, he loves us, and wants the best for us. I realize that the scripture in the bible that says, God works all things for the good for those who love him, applies to me. So what did God have in mind? Like I said, I don’t have all the answers, but over the past months and days, something amazing is happening (notice the something amazing IS happening, not done yet). I’m being changed into a better person. My kids are being changed into more thoughtful, caring, non judgemental people. My husband is more sensitive, and thoughtful towards the people who break the “normal” mold. (by the way, I hate the word normal!) I was living a  good, average income, not poor, good kids, faithful christian life . But there was no real growth as a person. I wasn’t a bad person, just not growing as a human being. Some people are happy with no change, but I want to be better, learn from mistakes, not be as selfish, be more honest, open, loving, giving to others, not so self absorbed. I prayed for these attributes for years, and made some progress but basically it was going slowly.I was always crying to God saying, ”please, change me, help me be more like you”. So what did God have in mind sending me a child with Down Syndrome? He sent me an  answer to prayers that I had been praying for years. The day Micah was born, he created in me a heart that can feel the deepest pain, so I could feel others pain in a real way. He gave me the ability to look at imperfection by the worlds standards, and see it as beautiful and perfect by his standards. I can accept the things I cannot change, and change the things I have the ability to change. I now appreciate the small things. I’m not concerned about what my kids can’t do, but what they can do. A smile that so many times  would be overlooked on my childrens faces becasue of business, I now see.  I now notice every little giggle, every smile. In conversations I use to be proud to say, yes my baby is so smart, he is already saying words, and almost walking. Now I’m proud to say, look at my babies smile, he stares at me when I sing him a song, look he is reaching for me. I was so busy before just doing what I was supposed to, what most moms do, that I missed the small stuff. I now pray for other peoples babies who have far more needs than mine. Like the baby I met in San Francisco named Christina, who had heart surgery like Micah, but had a stroke during the surgery and now is blind. I pray for others. In a world that thinks of themselves, keeps to themselves, I can say that I have experienced the best of the human heart. I stood next to a lady at a special Olympics event who I had never met. As we were watching the kids with various disabilities, including  children with down syndrome run a race, we looked at each other with tears streaming down both our cheeks, and hugged each other. Strangers bound together by a moment in time that I will never forget. We cried at the human spirit, the goodness in all of us, the faces of the imperfect giving their all, while we supported and cheered them. W

Micah, my Blessing from God

e are all connected, God put love in us all.

     I can write all night about the experience I’ve had in the past 9 months. So What did God have in mind? I believe he has a purpose for all of us. Micah’s purpose was to help me and my family become better people, more loving, caring, and accepting. Micah’s birth has already taken me to places I have never been, and brought people in my life that I would have never met. He makes people happy, and he makes me happy. God got my attention, and answered my prayers. I think sometimes we don’t expect to get the answers in creative ways. I’m closer to God, my family, friends, and my community. My purpose is to  help, encourage, love, pray for others and do whatever God ask me to do with the life he has given me. What I thought was not a good situation ended up being the BEST! I hit the lottery of heaven. I’m changing, I have a beautiful family, and a special gift sent directly from God to change me and the world around me… my designer chromosome baby…. What did God have in mind?? The BEST BLESSING he could ever give me.

Yesterday I was holding Micah, and singing to him. Now, my voice isn’t American Idol quality, and I’m totally off key, but Micah didn’t seem to notice or care. He stared at me with his almond shaped blue eyes in awe and amazement! Before I started to sing to him, my heart was heavy and  a little sad. I was wondering what his life would be like as he grew older, I wondered when would he walk, talk, give me kisses. These were all things I never had to think about with my other 3 children. Maybe I should have thought about those things with the others, because I can barley remember them and that is sad. So as those thoughts swirled in my mind,  my heart  was clouded with a little sadness, as I realized that this child would bring something different to my life, something I don’t have any experience with. Then like a rainbow that comes after a storm, when I was singing to Micah, he smiled and cooed, as if to say,” Mom, its going to be okay.” It made him happy as I sang to him, and it made me happy to sing to him. I had a revelation in my heart! As a christian, we praise God with songs. It says in the bible he delights in our praises. Just like Micah, God doesn’t care if we are off key, tone deaf, or down right terrible singers. He looks at us like Micah looked at me, and is delighted, pleased, in awe and in love with who we are, and the sweet aroma of our voices. We don’t always have to have all the directions, and that’s okay. It is amazing how this child who has down syndrome has been used by God to touch my life and others. I say this with full confidence that the face and heart of God is reflected in the face of children with Down Syndrome and other disabilities. When you don’t feel like singing, sing anyway, and ask God to but a new song in your heart. My life and Micah’s life is in God’s hands.. and those are the best hands to be in. A simple song sang to my child, cleared the clouds around my heart, and now my heart is happy….

My journey started in January 2008 when I found out I was pregnant. At this point I had three kids ages 15, 10, and 7. I had lost 60lbs with lots of hard work and exercise, and I  was getting ready to start my Roller Derby career. Not only did I have a full life, I just turned 40, and had a grand celebration party in December given by my husband and friends. I won’t lie I had to adjust to the idea of being pregant, although excited for the new little one that the Lord would bring into our lives. I had a plan for my life, and I thought it was a pretty good one. The Lord had other plans . This pregnancy wasn’t like any other. I was terribly sick with high blood pressure, water retention, and appointment after appointment.  Of course my age was a risk and I was warned with several different senerios of what could take place. My husband and myself believed that whatever God was creating in my womb, was what it was supposed to be. I believed and had a peace that everything was fine with my little baby, my gift from God. So my journey began. I was  on a path where things looked pretty good to me, a path where I was somewhat familiar with, although a little rusty and older.On Aug 12thI had the biggest detour I had ever faced. I was having my baby one month early, and I was scared. I was admitted to the hospital after a questionable stress test, and told I would be having a c-section at 7 in the morning. I had the c-section in the morning with Robert, (my husband) , my three children, my mom and dad, and my closest friends there by my side. Micah Mitchell was born that morning and they said he was small but all is well. I asked the nurse in recovery again if everything was fine and she said yes, he is just in Nicu due to being premature. Everyone was so relieved and went home to let me rest. The detour wasn’t so bad after all I thought, all is well and I feel so much better not pregnant. Then without any warning, the path stopped, the detour signs were gone and darkness filled the sky as I was faced with 4 hospital personnel looking at me at the end of my hospital bed. The news the Dr. spoke pierced through the hospital air like a arrow headed straight for my heart. It hit and took my breath away. YOUR  son has Down Syndrome.  So, my journey continues, its just not the journey I planned for. Does it mean that it won’t be a good one? Does it mean I will be lost forever? NO, I’m making my way on the path with the help of the greatest guide ever. The only guide who will actually pick you up and carry you when your lost… Jesus Christ. I’m on a journey, but I’m not alone. I think he is bringing me on a better path, one I would have never chosen to take, but one that is more beautiful than the path I was on. I’m not lost, I’m just taking my time.