As I sit here in front of my computer this morning there are tears running down my cheeks, creating a pool on the desk. Today it is two years since Ethan entered our lives - so small and obviously so unwell and we had no idea what was coming... It still breaks my heart that I could not do more for him. Last year I held my breath as the first birthday and angelversary approached and passed - it was agony. This year the days have just come marching forward and for some reason it is harder. I always thought that more distance of time would help but it actually makes it worse... I am so in love with our new blessing baby and because of the IVIG treatment he is asleep right now in his crib, but he will never know his big brother, and someday we will explain to him about the brother who came before. My oldest asked me yesterday what I think Heaven is like and what Ethan is doing right now, and like any teacher I turned the question around back to him (honestly I couldn't have said anything at that moment without blubbering) and he said "Heaven is full of sunshine, grass, flowers, butterflies, and dragonflies and it smells like outside in the spring after it rains. And there are angels and they taught Ethan to walk and he loves to play with all the other babies." There is so much comfort in that belief, but so much agony as well. As I have missed so much of him, and I think of what he would be doing today on his second birthday. More then anything I wish I could be making him a cake right now instead of a blog post. So today in remembrance of him we will send him birthday balloons, and keep loving each other through the hard times and depending on God to get us through the storms.
I love you to pieces little Ethan...I want to hold your hand and brush your hair...I want to hold you and never stop...I miss you baby so so so very much!
"Everyday holds the possibility of a Miracle."
Wednesday, May 9, 2012
I grew up in a family of musically talented people, we all play instruments and have good singing voices. Every Sunday and most Christian Holidays we would gather around the piano and have a good Hymn sing. I loved to sing...I would make up songs in the car on vacation when I was little and drive my brothers crazy...I would sing myself to sleep at night...I sang in my car...I hummed while I worked. When I had children I loved putting them to bed at night. I would rock them and sing a whole list of songs to them each and every night. That all changed the day Ethan died. As I held him after they removed him from the respirator I felt so compelled to sing "Jesus Loves Me" to him, but the words stuck in my throat. It was after that I stopped singing. I just can't anymore. I can hum along with the music or sing the words in my head, but I just can't make them come out my mouth. I have tried to find ways to get myself singing again and nothing has worked...I finally decided that it was just a product of my grief and someday I would heal enough to sing again. I honestly thought that singing was one of those things I would get back in my life after Gideon's arrival. I have always loved rocking and singing my babies to sleep at night, but I can't. I rock him and try - I have tried several times in fact but it just falls flat and eventually fades away. My husband and I were able to go out alone just the two of us two weeks ago for my birthday - it was to a Christian music concert - it was powerful and I loved it. It was there that I came to realize what the ongoing grief of my son had taken from me - my ability to praise out loud. I miss it, but every time I try my throat clogs up with unshed tears and I can't make it work. Reality is, I am still Ethan's mommy, and He is still separated from me by death, and I still grieve very very deeply. So deeply I often can't put it into words...let alone raise my voice in joyful praise.
Posted by Leah Nyangamoi at 5:37 PM
Monday, February 20, 2012
I found myself on January 31st with a desire to write about the concept of being prepared, but felt the need to move up my doctor's appointment a day instead and ended up going into labor a week earlier then our set induction date. We can testify to what God has done in our lives - in all things, but especially in the birth of our NH miracle baby. After months on long IVIG treatments, worry, anxiety, and our fair share of fear, God brought a perfectly healthy baby boy into our lives on the morning of February 1st. After his birth I was able to hold and cuddle him for a while, something I had longed to do with Ethan and couldn't. Then they took our little "warrior in the faith", Gideon, to the NICU to run the liver tests and the waiting began. It was a short three hours later that we were told that we had a perfectly healthy little boy, and that I could feed him however I desired to and my again heart sang with gratitude for answered prayer. As I gazed at my newest son I saw so much of myself in him (which is a first - the others look so much more like their Daddy), but I also saw through a sudden rush of tears that he has Ethan's eyes. I wasn't prepared for that. As we spent a few days in the NICU working through a few preemie issues, I thought I had been prepared for going back in there - a place I never wanted to see, hear or smell again. But the first time I was pushed through those doors and we went down the same hall we had walked daily to be with Ethan, and right past the room where he passed away in my arms - all of the emotions rushed back like it was yesterday. I had to tell myself over and over again that this time was different, our miracle baby was fine and we were not going to leave another baby behind in that place. As I spent a few days there, the emotions changed, and I found comfort in the dragonflies in the carpet outside the room and hanging from the ceiling in the hallway. i found comfort being surrounded by doctors and nurses who had known Ethan and cared for him, and who stopped by to talk, understand, and rejoice with us in our precious Gideon. I was reminded that though my heart was so full with joy at the healthy arrival of our miracle baby and so overflowing with anguish at missing Ethan at the same time, this too shall pass. I clung to God for strength, waiting and praying for that moment of triumph when I could walk out those doors with my baby in my arms, at the same time reminding myself that this journey of life is preparing me for the day when I will hold my angel baby in my arms outside of that NICU for the first time too. The horrors of death and disease on earth cannot hold us forever - we have a much greater promise of joy and peace eternally in heaven when our journey here is done. And though I had thought about how it would be, I was not prepared for the rush of joy and freedom felt as I left the NICU to go home with our Gideon in my arms. Only by the grace of God are we here in this moment and only for His glory do we rejoice!
Posted by Leah Nyangamoi at 10:29 AM
Thursday, January 5, 2012
An interesting thing happened on the way home from my 33 week ultrasound yesterday. Everything had gone well and a major milestone was reached in that baby is now 4 lb and 10 oz - bigger then Ethan was at 37 weeks at birth - I was feeling okay but not completely joyous - which has been normal in this process. As I walked out to my car I was pondering the fact that we are 4 weeks away from our scheduled delivery date of 37 weeks, and realized how far we have come and how close we are. I began praying as I was driving - asking God for his mercy to rain down on us and this little one for the next four weeks and keep our precious miracle healthy and strong - that things continue to go well. I found myself repeating this prayer in my anxiety as I was on the way home, when suddenly I was overwhelmed by a lifting of my spirit. I honestly felt like the big load, that had taken up residence on me after we said "Goodbye" to Ethan, had been physically lifted off my chest, and for a few moments I felt like I could breath and I was overwhelmed with the reality that all really can be okay - that there is more promise and praise in this situation then fear and negativity. I rode this buoyant thought home and remained very positive for a while, before the reality that things can change very quickly in this medical situation and we still have four weeks to go settled in once again. Still...I find myself this morning anxious - not from fear - but from hope - hope that our little one will come home this time, sleep in the crib, demand much from mommy, require daddy to walk the floors at night, and be a joy in our family. I find myself overwhelmed by gratitude - that God has given us the ability to walk this journey and continues to carry us through. And strangely enough, I find myself overwhelmed by an emotion that has been very absent from myself - peace.
Posted by Leah Nyangamoi at 5:20 AM
Thursday, December 22, 2011
I have not written in a while partially because I had so much to say I did not even know where to start, and partially because I feel like I have been holding my breath and that acknowledging my feelings and thoughts will make it all too true. One of my precious sons revealed to me last night that I am not alone in my silent worries right now and reminded me that sharing with those I love even when it is hard is so much better then holding it in. My oldest son came into my room last night looooooooong after he should have been asleep to tell me that he just could not sleep. (so very much so my own experience every night lately) I figured that he was excited about Christmas coming, as that is all they can talk about lately, but asked him "why?" anyway - sure that I knew the answer. Boy, was I rocked back on my all knowing heals when he said quietly, and while looking at the floor, "Mommy, do you remember when you came home from the hospital last time and I asked you where Ethan was, and you said that he was in heaven and never coming home to our house." I swallowed and breathed deeply before I answered, and managed to squeak out a "Yes". He said, "I am worried about that." Then he looked up at me in that, "Okay Mom, you can take it from here" expression. Again I swallowed - trying to control my own pounding heart, ugly fears, and sudden tears. I tentatively asked him if he was worried that that would happen again with this baby, and all he could do was nod yes as he crawled into my arms and cried. So we both had a good cry and talked and then I tucked him back into bed, only to return to my own with a racing mind and so much anxiety there was no way I was going to sleep any time soon. I am trying so hard not to worry, but to have faith and just believe that God hears, God has granted, and God will carry us through. I want so much to believe that all will be well and my boys will not have to grieve the loss of another sibling or myself another child. We just had our 31 week ultrasound and everything looks good and the weekly IVIGs are nearing their end, but still I can't help but daily fight fear and anxiety. I have been having a hard time getting things ready at home for this baby. I remember all to clearly how heart wrenchingly painful it was to pack up Ethan's things when he never came home to use them and I do not want to go through that again. We recently made a decision though - it live out our faith and our belief that God hears and is answering our desperate bended knee prayers, and set up the nursery. As I have carefully organized everything I find myself making a mental list of where I have put each baby item around our house so that if I need to, I can quickly pack it all away again. And yet, I continue - to set up, organize, and dare to dream that not too many weeks from now the sounds of our home will frequently be made that much noisier by the beautiful sounds of a crying baby at all hours of the day and night. In this Christmas season I keep coming across made for TV movies, cards, and songs that remind the viewer/listener to "Believe", and I have taken that mantra up for myself. When I start to worry or be overwhelmed by anxiety I breath in and close my eyes and exhale "just believe". Sometimes I have to do it over and over and over again, but it feels like a big step forward for me in this journey. That I am even embracing the idea (however tentative it might be at times) of believing and hoping only in God as he has his hand of protection on our family and this precious little life.
Posted by Leah Nyangamoi at 1:37 PM
Friday, November 11, 2011
Lately, as I do only those things that are within my power to do for my child, within, I still feel so incredible helpless. I have to leave the rest up to God - as it is all in His hands anyway. It is just really hard - to continue to pray every day for a miracle and dare to hope for one, but to be met with silence. I know that God works and is at work even when we can't see it, but oh I really need to see it! As I have witnessed more fellow NH moms give birth over the past two months and have seen more negative outcomes then positive ones, my heart falls within in me and I scream out, "Please God not us too!!!", and I am met with silence. I beg for reassurance, and even as I went to another ultrasound this week and everything looks great at this point that isn't reassuring, because at this point with Ethan everything looked fine too. And in reality we won't know anything about the health of this child until the moment he/she is born, and the tests come back. We have gotten to the point now where we are looking forward in hope to the birth of this child, but it is tinged by its fair share of fear. Just last night my husband and I were talking on the way home from running errands and marveling at how quickly the weeks have flown by, and how soon we will be at our target week date; then we both just fell into the deep silence of our own thoughts, trying in vain to smile at each other in hope but both still so acutely remembering Ethan's birth and the horror that followed. And so we pray that there will be joy in this birth, and that we will continue to walk through the silence in faith - believing that God is performing a miracle within me. My greatest hope is for a healthy child - but beyond that I yearn to breastfeed this baby like I have my others. It is what I longed to do for Ethan and never could and to this day that remains my deepest hurt of the time I stood helplessly by his side. But, this baby has to be born with no signs of NH for me to do that, and I want so desperately to do so - I long for the bond that is just mine with my baby - but I am afraid to ask God for it. It is ridiculous really - I should be totally focused on a healthy baby no matter what the implications might be following testing and yet a huge part of me is hung up on what comes after. But that is the reality in which I find myself - in a place of hope and fear constantly swirled together - surrounded by silence. Even thought my husband and I have each other through this process and I have the amazing support of the other moms whom have also traveled this road - each case is unique though no one knows why and again we have no answers and again we wait in silence - praying and hoping that all will be well but not knowing that it will be. So in that difficult waiting place - we strive to love this little one and pray so desperately that God wills a miracle for us.
Posted by Leah Nyangamoi at 7:11 AM
Monday, October 17, 2011
As I write this a fellow NH mom waits in a NICU beside her child, hoping and praying for life. It has been such a blessing to be connected to fellow NH mom's who know the bitterness of the sudden death of their little ones, and witness their journeys toward healing through the treatment of a subsequent pregnancy as we are now attempting. And yet, as the past two to deliver have been compromised by NH, my heart cries out selfishly - please God not us! The last place that I ever wanted to be again was the NICU - the very smell of the floor as the elevator opens turns my stomach. It is inevitable that we will be there, but I pray that it is only for the 24 hours for tests to come back perfect! I hope and I pray for a miracle - I long to spend the next 16 weeks down on my knees never moving from the feet of my Savior begging for a miracle, weeping for one. Not only for the healthy birth of our child, but that tests come back perfectly normal - no sign of involvement with NH - so that not only can we bring a healthy child into our home but that I can nourish that child myself. Sometimes I fear that I should not ask - I should just go with the flow and live with the fact that God is the only one in charge of what will or will not happen and not insert myself into it. But, I am a mother and I am already desperately in love with my child and I want the best, hope for the best, and want to believe. There isn't a moment that goes by that my heart isn't issuing silent prayers for a miracle - a true - Soli Deo Gloria miracle! I know that I will love, live, and believe no matter what happens, but yet I pray my selfish mother's heart prayer for a completely healthy miracle by none other then our God. "My God...My God...deliver us safely through!"
Posted by Leah Nyangamoi at 3:25 PM