It is Mother’s Day, and it is off to a sad start. Ethan and I agreed that this was not going to be a day of celebration, and therefore I am not disappointed in that sense. But today has been very hard and it is only noon. I can’t even figure out what is different. Maybe it is that the stress and sadness of the past 5 days are finally catching up with me. Ethan and I have both found ourselves very … well, depressed I think is the word. I can easily say that I have never experienced this feeling. My life thus far has been very easy, very blessed by my Lord. But I now face something bigger and scarier than I am ready for. I know that my Lord is next to me every minute. I know that not because I can feel it, but because I just know. And I guess that gives me a little strength, but not really. I know that I have probably thousands of people offering prayers on our behalf, and family and friends to lean on, but that does not really give me strength at this point. And though my sweet Alyssa can still make me smile and even laugh, I find no strength in her. Someone, please tell me where do I get it? What do I do to keep my self from such negativity? Feelings of just wanting to run away. Feelings of anger, needing to blame someone.
This morning as I lay in bed with Alyssa, Daddy comes in crying. She looks at me and says, “What Daddy doing?” I tell her that Daddy is sad, that he is crying. We want to bring Noah home. And she understood. She gave her Daddy a kiss and said, “It’s alright Daddy.” Later in the morning, I am still in bed, Alyssa comes in and sees me crying, “What you doing?” I said Mommy is sad. Alyssa tells me, “I feeling sad, Noah come home, I feel better.” It only made me smile. Such a sweet and precious girl we have. Alot of my heart aches for her. We talked so much of Noah in the months before so she would be ready to be a big sister. And now, what do I have to give her? We are taking her up today to see him. And I hope that she will hold him.
Ethan and I pray for a miracle for our Noah several times a day. But I am wondering what should I be praying for? We were both very sad as we spent time with him last night. Sadened because we saw no change. Am I putting too much pressure on God to give me what I want? Am I being selfish? The more I put my trust in him, it seems the more I am let down when he is “the same”. Noah is moving much better than in the days before. He will arch is back, raise his arms and legs, squeeze your finger. He also started responding to pain, when you pinch his toes or when the nurse has to suction him out. Which are all great things. I guess I just need patience and to wait on God’s timing for our son. But I look around the house, and everything is a reminder of what we do not have. And I am really struggling with that.
The hardest thing is to not look to the future. Not look at where we may be in 6 months if he stays in the state he is in. The doctor is waiting to see if Noah rebuilds his suck and gag reflex so that he may eat. If he does not, he will have to be fed with a tube for the rest of his life. So you think, how do you do that with a 2 year old? How will I be able to go to the store with a baby like this? What about when he is 20? Those thoughts really get me down. So for now, I struggle to take each day as it comes. To deal with today, for tomorrow has enough worries of its own.
Ethan & Julie,
As I read your comments and sit and think the same things you do. My heart is saddened more than I could have ever imagined for a child that is not my own. I want to say all the right things and make it better for you, but I know that I can’t. This morning Rob’s sermon was about bold prayer. It was a great “coincidence” and allowed Rob to tell your story first thing. Then we prayed for you as a congregation and again at the end, led by one of our elders. I know that maybe it doesn’t seem to help, but I pray that you will feel peace. And we continue to pray boldly for complete healing in Noah. I am incredibly encouraged by the progress he has made, which is easier to see that way from where I sit. We continue to lift you up and pray that the God of Wonders will give you the strength. I will continue to pray for sweet Alyssa as well.
With love and prayers,
Lisa C.
Julie and Ethan,
We don;t have the words other than to say we are praying for you and now that God doesnt give you anything you cant handle. You are a strong family.
Matt and Terri Flory
I understand your hurt. I understand your frustration. I understand your sadness. Our Father does, too.
God bless and keep you all.
Your Sunday class lifted you up in prayer as well today. First for Noah and his body and health and strength. Then for you and Ethan and Alyssa. And then just for those who are running to be by your side. You have arms to lean on. Its ok to use them.
unlce steve
We are still praying for your endurance. Your family is the salt of the earth; together you will make your way through this valley
Jim and Betty Lawless
God ask that you cast all your cares on him because he cares for you please do not free like you are being selfish or asking to much of him. This is only a test GOD has great things to do with your life and this is the way he sees fit to test you. The enemy is placing doubt in your spirit please do not let the enemy still your joy. The Lord can raise the dead example( Luke ch. 8) Jairus daughter was dying he came to find Jesus as they were on the way Jesus stopped to heal the lady with the blood disease in doing this Jairus’s daughter pasted away everyone was sad and morning for the girl when Jesus said she is not dead but asleep everyone laughed at Jesus until they arrived at the home where Jesus called the girl forth from the dead. I say all this to let you know that If Jesus can do that healing your ill baby is a walk in the park for him. If you remember when Jesus was crucified all the terrible things happened on Friday but he had the victory on Sunday when he rised from the dead. So think of this as your Friday but guess what……….. Sunday is coming. Stay encouraged please feel free to call me at 9163391845 for prayer or even just to talk if you are more comfortable email at moclementsp05@aol.com
One thing I know is that it is natural to experience darkenss in times such as these While I was beside my Mom’s beside, being overwhelmed with sadness & darkness I read that when things seem dark, look up & see the shadow of God as He reaches for us to hold us & to comfort us. Julie, Ethan, dear ones, rest as you sit on His lap, leaning against His chest & feel His breath upon your face. God! We pray you make Yourself such a enormous presence in this precious family …. give them moments of peace & renewal. Allow them to breath a sigh of relief that only You give.
Our prayers for you continue.
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and yoI thought ur minds in Christ Jesus.
-Philippians 4:6-7
I don’t know you personally, but I have heard so much about you through a good friend of yours. I really don’t know what to say except He is listening. In church this morning all I could think about was Noah and your family. We sang Jesus loves me and tears streamed down my face. I thought how perfect that sinple childhood song was but how powerful it is at the same time. Julie, Ethan, Alyssa, and baby Noah-Jouesus loves you no matter what.
Jesus loves you this I know, for the Bible tells me so, little ones to him belong, they are weak but he is strong.
I am praying for you to find some peace in this time of darkness.
In His Name
Stephanie
It’s appropriate that it’s raining today. Our hearts are heavy and it seems that God joins us in our crying. It has been a difficult day to stay away, but we understand your request. We love Noah so much, and it does our hearts good to touch and kiss his precious body. What a beautiful boy he is. It is in the quietness that my sorrow comes; transporting me to a time when all was well, hard to believe that was less than a week ago. You know our hearts and our prayers are constantly with precious Noah. That asking God for a miracle is a sign of Faith and not weakness. He asks that we go to Him boldly, and we do. There is nothing that I would rather see than sweet Noah joining his cousins and running the “track” through Nana’s dining room, living room and kitchen. We surely expect that soon he will be there. He is a gift that has already taught us to appreciate our boys more than we ever have. We love you; we will cry with you and we will rejoice with you. He is my precious Noah, my Godfully, perfectly made nephew.
I love you all.
Aunt April
Julie & Ethan:
Wendy and I love you very much and we are praying for you. We are praying that God, The Great Physician, will heal Noah.
Weldon
I know about you through my brother and sister in law Rob and Lisa. My heart aches for you right now. I’ve thought about you so much today on this mother’s day. I pray that God will heal Noah. I pray God gives you peace. I think God is very pleased with how you have shown faith in this trial. He knows your heart and understands your every thought. Don’t judge yourself so harshly. we are just human and He understands our tears and any feelings we have. I find myself wishing there were words to comfort you and not finding any. Just know you are being lifted up often to God. In Him, Ann C.
Julie, Ethan, Alyssa and Noah,
We are so blessed to have you in our lives. We have witnessed – every day – the miracle of you, baby girl, and now we can see the miracle that is this baby boy. We love you guys so much more than we say or are able to show. How blessed are we to witness your love of our Lord? Perhaps God is using you for a plan that will never be revealed to us. But we already know the love in our hearts for you all comes from the Lord. We are happy to have a little more love in our lives. How great is it that we can truly, wholeheartedly love? That’s all Jesus did for us and it was everything we needed. Know that you are loved, unconditionally, steadfastly and infinitely. Not just by us but by what seems like thousands. Praise God for His precious gift of love. We only hope He has an abundance of gifts stored up for you – wait and see. We will…
We are praying for each one of you.
Ali and Ry
Julie & Ethan, I don’t know you. I stumbled across your blog unintentionally. I am the mother of three children and my heart truely goes out to you both. Your children will be in my prayers for God’s purpose in them be fulfilled, and for great grace and mercy for you and your family. I feel lead to offer you this; declared from the lips of the 3 Hebrew boys upon being sentenced to the firey furnace, ‘My God is able to deliver us, but even if He doesn’t…..'[para Dan3:17-18]. Remember, God’s ways are not our ways, and we do not have to understand Him in order to trust Him. I am reminded of Jesus’ statement upon hearing of Lazarus’ illness, ‘This illness is not unto death’, yet Lazarus died. Jesus did not lie, of course. ‘The glory of God and the Son of God were made manifest through it.’ [para John 11:4] It is easiest to trust God in the times of plenty and comfort, but during the times of famine, drought and great heartache…that takes faith. I pray you CHOOSE to trust Him in whatever His purpose may be for you. I will bookmark this page to learn what happens from here; but remember also, that once you pray for God’s will to be done in your lives and you fully trust and believe that when you pray, He has heard you, then you CAN rest in whatever happens, knowing full well that this is God’s will concerning you. I pray this has brought some form of comfort and peace. In Him, Alisa http://thejesustribe.blogspot.com
Julie and Ethan,
I want you to know that I sent an email to our church in Australia and asked them to spread the word over there to pray for Noah and your family. Just think that people all over the world are uniting and praying for your peace and Noah’s healing.
Sue L.
Ethan, Julie and Alyssa,
My heart and soul goes out to you. I heard of your baby’s news a few days ago. I am speechless.
What I can offer you right now is my suppot and prayers. God has blessed you with a special boy. How symbolic of a name – Noah – rest, peace.
I do believe that God works in mysterious ways.
Peace be with you.
Love,
Lisa Ann H.
Julie,
My heart floods with emotions reading your message today. Precious Noah has touched more peoples lives in a very spiritual way in his few days on the earth than some people do in a lifetime. My mommy heart also knows that it is hard to find joy or peace in sending out prayer request instead of birth announcements. The NICU is the most lonely, exhausting and purifying place I have ever been. It the worst place I have ever been and yet it is also my most favorite place in the world. There is such frustration when Dr. Fix-it can’t fix it and God chooses to wait. There is also incredible beauty and joy in redefining perfection. Whatever path is laid before Noah you will take just one step at a time and although it may be different than you planned, I believe, it will be amazing because of who walks with you, who you lead and all that you see along the way.
I pray you will not only know God is there but that you will hear Him say, I love your Noah even more than you do, that you will feel him wipe your tears, hold your hand and pick you up when you can’t get up on your own and that you will see His face in a way that will change your life and your heart forever.
Bridget
A fellow NICU mommy who didn’t have the strength either…but was given it every time!!!
Julie and Ethan,
My wife and I have been down a similar road with two sons in the NICU and we recognize the feelings that you have shared with us.
We pray for your family and that God’s will is that sweet Noah will be healed. I pray that Jesus will hold you tight in his arms so that whatever storms appear on the horizion you will always know that his love will see you thru. When you need him the most he will show you the way.
The Lozano Family
We are thinking of you – it is endlessly frustrating to see you have to go through this time. I wish I could do something to help – but I know that I cannot. Please know that we are here for you and that we love you.
Adam
Praying for you and your’s.
Julie,
I am responding to your question about where to get the strength you need. The most difficult time I ever faced was when my marriage seemed doomed to failure and divorce. I was just so tired of the struggle that I was ready to give up. Then late one night I prayed differently than ever before. I told God that I had prayed all my life for Him to help me, but that this time HELP wasn’t enough. I needed him to TAKE COMPLETE CONTROL of the situation. I had nothing left to give, and I knew that if left to my own choices and power I would give up. I told him that I was giving my marriage completely to him and asking him to carry the whole burden for a while. The results were miraculous. It was as if a physical burden had been lifted from my body and replaced with a sense of peace. I knew that God was in control and that I would be okay. That was the first time I ever experienced what the Bible refers to as “the peace that passes unerstanding.” Nothing had changed. My marriage was still a disaster. But, I knew that God had taken it. (That was 11 years ago, and my huband and I are happily married and enjoying each other more and more with each passing year.)
Julie, You are a very special mother to both Alyssa and Baby Noah and God will give you the strength to carry on during this difficult time. We are continuing our prayers for Baby Noah. Thank you for sharing on this website.
Stephanie Weiss
Dear Julie and Ethan,
Please know that you and Noah and Alyssa are in my prayers. I will pray for your strength and your patience as God’s works through you both, as well as the doctors, the nurses and the myriad of others helping to care for Noah. I had some of the same feelings of helplessness and fear for the future when Greg was in the Infant ICU at Texas Children’s 31 years ago. It is a frightful time, yet God is there with you always. Know that we love you all and are here for you.
Pat Pratt
We are praying for you two to get rest, and nourishment, both physically and spiritually. You are doing exactly what you are supposed to do, and God is doing what He is supposed to do. My miracle prayer for Noah: That God is revving up his little engine, little by little, as we all trust God little by little. Not direct cause and effect, of course, but the two are going on at the same time. The more oxygen and food Noah gets, the more brain revives. It is what I am trying to picture as hard as I can while I pray. God could do that. He could cause what has no electircal impulse to have one, then two, then the thousands that are needed.
And of course, He could continue to comfort Noah’s soul, as it rests in his little precious body until it comes back home to God.
When Juanita was here for her last months on earth, the way we got through knowing that things were not good medically: we acknowledged that her body was very ill, and that illness might indeed take her to heaven. But we also fully embraced the notion that He might heal her and she might overcome the cancers. She believed until the very last because getting up every day, and praising-yes-praising her Heavenly Father-refreshed her soul and body.
So I will praise our Heavenly Father, trust Him to be Who He is, and picture those electrical impulses in Noah’s brain. And I will submit that the plan might be different and try very hard to accept it.
I will pray for you all, that God show you every day, something so you know He is with you. Every day, praise Him and trust Him, even if it is hard to do. For what else can we do?
Psalm 147:3 “He heals the brokenhearted and binds up their wounds.” Thanks, Dad, for healing our broken hearts. Here are the pieces, but please be patient, because a new piece is breaking off
every time I turn around.
Loveya, Carol
nothing but tears pour from my eyes as i read your entries. i do not know what you are going through, but i wish that i could take some of it away. my heart, sympathy, and prayers go out to you. I know that our strength comes only from God, but sometimes, we’re just too weak to accept it. i just pray that you and ethan will get through this.
many blessings and lots of love,
mindy jones