Time keeps pa…

 

Time keeps passing. He is gone. My sweet angel is gone. I can’t hold him in my arms or look at his beautiful face. Why do some people seem to have everything, while others have so little. I think it is all a matter of perspective. For me, it’s not what I don’t have, it’s what I did. I must keep reminding myself of that.  What a privilege to be pregnant, to give birth, to know the gift of parenthood. I spent 10 beautiful weeks with my son. Seventy sweet, short days. They are gone now, what to do? As for me, I just don’t know. My days are filled with busy activity. Work, clean, do yoga. Talk to friends, look at pictures of him, try to face reality. Some days it’s all I can do to get out of bed. What can I say? I miss him. Life hardly seems worth living.  According to my plan, I should be breast feeding my child. Instead, I lie awake, lonely, searching.

Memories.

 

Seventy seven days ago, our son was born. Eight days ago, he died. We have come to the desert to recover. We have come to the place that is as dusty and desolate as our souls. Emotionally drained, it’s all I can do to walk through this life.  Its good to get away, to vacate life. There are moments of tears and darkness but for the most part I’m very neutral. I can’t get much above neutral in the great plane of emotions. I miss him. I miss his soft warmth. I miss his baby smell and his big blue eyes. Just eight days since I held him in my arms but it feels like a lifetime ago. I am buried. Buried under this dusty terrain where little vegetation grows.  I know someday I will return to the verdant land where I usually live. Just not today. Today, I mourn. My dreams and expectations are on hold. Don’t know what I’m to learn here, but I will try.

Holden and friends

In case you’re interested in viewing the Holden & Friends video which played at his memorial, here it is:

http://www.youtube.com/watch?v=lWXJGNuPOJI&feature=youtu.be

If you’d like a copy for any reason I can email you a file.  Simply leave a comment below and we’ll make it happen.

love,

Laurie

 

Thank you

After 10 beautiful weeks, our son Holden Even passed away yesterday, June 20th at 3:37pm.  Services in his memory will be held tomorrow, June 22nd at noon.  The services will be at First United Methodist Church of Austin at 1201 Lavaca Street.  Please join us to celebrate his life.  We love you all so much and appreciate your prayers and support.

Tabatha

Good grief.

I’m sitting here in the bed tonight, crying, praying.  I have been asking for a miracle from God, believing for one. I have faith this is possible. I also  have begun to allow my feelings to come out a bit more. Since the beginning I have done my best to be strong and appreciate every moment.  I still very much intend to continue with that. Right now, in the dark, I must yield to the great loss I am experiencing. My son, sweetness and light of my life, is gravely ill. We can’t help him. He is bright and sunshiny but he can’t breathe. He can’t move his body or swallow food. I want to protect and preserve him. I want to love him. Part of the struggle is the inability to be with him for so much of the time. We are his parents and we care for him as such. He is also constantly  cared for by a wonderful NICU team. They all love and spoil him; treat him like the angel he is. Every person I have met along the way loves their job and does it well. I thank all if them for that.  The fact remains that he needs just that, a team of medical professionals, to maintain his life. All of these things hurt my heart. I’ve said it before, I just want my son.
 Tomorrow I will go again and enjoy every second of his life. I love him so much. He has taught me the sweetness of parenthood. The poignancy of joy and  of pain. I am thankful for him and have no regrets. All of my love.
Tabatha

Walking

 

When I was walking in to the hospital this morning, I looked up under the elevated highway and noticed that hundreds of birds had made their homes in the supports. I don’t typically notice such things, but going through life’s challenges causes me to notice the minutiae more readily. Little things like animals making their homes amid the chaos of the highway reminds me of the fragility of life. We are not alone. When I look back on other seasons of challenge I see the profound effect they had on me. I’m also reminded that there are millions of others who are struggling in this moment too. Others are experiencing disease, war, loss of some sort. I sometimes wish that I could be happily moving through the everyday as I normally am.  But, if Holden had been a “normal” baby I wouldn’t be treasuring the sweetness of every moment. Again, I know there is something to learn here.

Holden has been doing alright. He has started to experience vagal episodes. These are little moments that trigger a sudden drop in heart rate. He becomes quite pale and it obviously scares him. They are sometimes preceded by him struggling against his tube but more often seem to be caused by him being moved. The simple act of moving him in his bed seems to stress him and make him uncomfortable. As his mother, this is hard to take. Most of the time though, he is his normal self. He is a wonderful baby. He is even tempered, smiles, enjoys music and listening to stories. He loves the sponge baths I give him every day. He has toys that he likes. In short, he is pure joy and light. I wish you all the joy I am experiencing. Even in pain, life possesses such sweetness and poignancy.  Love to you all. I am walking with my maker today and I wish the same for you.

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Efforts

Well, we are making a last ditch effort to try and help our son. We have been trying to consult with a pulmonologist in New Jersey to figure out another method of ventilation. I have been referred to him by a few different, caring individuals.  He treats neuromuscular patients. We are just waiting for our doctors to consult with him.  The fact remains though, our son can not breath on his own. Unfortunately, there is little hope for improvement.  I’m tired, depleted and down. If it weren’t for all the wonderful support of friends and family and my sweet son’s face, I would have given up long ago.  Please continue to pray for us. I would also ask that each of you treasure the moments. All of them. I will do the same. So much love coming your way.

–Tabatha