Embrace the Journey

         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