Thursday, May 15, 2008

Nate's kidneys

Mornings are hard. I wake up feeling sick to my stomach...a feeling that rarely leaves me these days. Wednesday night, I spent a couple of hours reading the "stories" of other families who had children with SMA. There was a lot of great information that we need to know in these stories, but they were horrible to read. I didn't sleep hardly at all that night and woke up yesterday morning feeling panicked. I knew that it was going to be a day I couldn't handle unless the Lord intervened.

Nathan was taking a nap and I put a good show on for the girls, and I hopped in the shower. I have recently realized that a shower can serve more purposes than just washing away the filth and stench that these hot days give a is a place where I can cry as hard as I need and pour my heart out to God without interruptions. And that is just what I did. One of my best friends made her daily call right after I hopped out of the shower, and instead of both of us crying on the phone, somehow we got on a topic that is not suitable to be blogged about and we laughed and laughed. We laughed until our cheeks hurt. Oh, how it was good to laugh!

A little later, I felt a peace about me that I haven't felt since we were at Sea World. It is the first time I have felt that comfort here at home. The Lord had intervened. He is so merciful.

I'm going to wait a few more days before I read the stories of the children that had SMA again. I know that those stories have invaluable information to us, but it may just be a little too soon.

I am constantly amazed at how the Lord has dropped people in our lives through this difficult journey over the past few months. Some of those who were reading this when I was pregnant may remember the woman I ran into at the park who had the little boy with Down Syndrome. I had never seen that woman before and haven't seen her since that encounter, but visiting with her for just those few short minutes brought comfort to me for a long time. I have thought of her and her son often. This happened quite a few times when I was pregnant with Nathan. God used people that we didn't know to comfort us. Nathan had another ultrasound of his kidneys this morning. Before the appt, I found a "tucked away" little waiting room so I could nurse Nate. There was an older woman sitting there, but I didn't think that she would mind me nursing him. She was there alone.

We talked some about how different things are raising children now versus when she raised her children. When Nathan finished nursing, my little social butterfly stole the show. He smiled and cooed at me and was just so happy. She said, "Surely he isn't here because of problems??" I told her about his kidneys and that he has had numerous health problems since even before he was born. I didn't tell her about the obstacles we are currently facing.

She looked away for a moment and then looked back at me with tears starting to collect on her cheeks. "I lost my first born son when he was 7 months old. He died of SIDS. It has been 47 years, and I still think about him everyday."

I said I was so sorry but then looked away for fear of losing it emotionally. We remained silent for a few minutes, and then she started talking about her two living sons, and I talked some about the girls. And Nathan kept on smiling through all of it. I was able to hold it together until I got back in the van to head home. And all the way home, I thanked my Lord for putting yet another person in our lives for just a few minutes to give us the comfort we needed. That woman had no idea that we may lose Nathan. God sent her to me. He showed me that there are mothers everywhere that have lost children. And if we do eventually have to say goodbye to our son, it will be so hard, but we will be okay after a while. We'll think about him everyday for the rest of our lives...we may still shed tears after 47 years, but we will essentially be okay.

I am thankful for the woman I met this morning.Your support over the past few days has been so helpful. I simply can't reply to most of the emails I have received...I apologize. The support within the SMA community has been incredible! I have never contacted them but have received numerous emails from parents with children with this disease. Yesterday, we received an over-nighted box from the organization "Families of SMA" with lots of information about SMA along with a sheep-skin blanket for Nathan. And as I was typing this entry, another knock came to our door. It was a huge box of toys and an outdoor swing that reclines for Nathan from a family that had a daughter with this disease. The support has been amazing. Thank you. I took this picture a couple of weeks ago...I treasure it even more now.

Oh, almost forgot about his kidneys. Well, they still have fluid on them. I don't know what the next step for that is, but I'm not worried about it.


Anonymous said...

I found you by talking to a great friend of our family that I have known for years, Anita D. She talks to us about Nate and everything that you are experiencing in life right now. I wish I could say something that would take all the anxiousness and pain away.
If you don't mind, I want to keep up with your family and Nate.

In August of 2004, we laid to rest our twin daughters, Mercy Ruth and Grace Lucille. One prayer that I keep with me to this day helped me...
"The time may be delayed, the manner may be unexpected, but the answer is sure to come. Not a tear of sacred sorrow, not a breath of holy desire, poured out to God will ever be lost, but in God's own time and way will be wafted back again in clouds of Mercy, and fall in showers of blessings on you, and on those for whom you pray."

I will pray daily for Nate's treatment and hopeful recovery.

Casey Whiteaker

Anonymous said...

Great post, sweetheart! And that picture in the Albert Einstein shirt is a trip! ;-) The last pic of our favorite Dr. with all three precious grandkids is also a real "keeper". Love you, gal! Jos. 1:9

Laura on May 15, 2008 at 4:40 PM said...

We pray for y'all everyday! There are no words to express the comfort I wish I could give you, but we are praying!

I bet you have to kiss those cheeks of his all day long! And seeing the girls in their bathing suits reminded me to set those swim diapers in the van. They're size small, so I hope they'll fit him! It's hard to tell what size he needs with such cutie pie cheeks!

Anonymous said...

Given the chance, I love taking a moment away from the daily grind to catch up on those I love so dearly. I picture myself there with you, and as I read I begin to cry. This has been my daily routine for the past week. I've managed to hide it pretty well, but a heavy heart rarely goes unnoticed by those around me...

I love you all so much, and you fill my thoughts and prayers each day. I have yet to meet this precious little one face to face, but I have just fallen in love with him. He seems to have the best features of both Gowens and Ferrell, and his smile melts my heart.

I miss you, and hope to see you guys soon, and finally meet my beautiful nephew.


Elisabeth Nixon Photography on May 15, 2008 at 6:05 PM said...

Amber I've known about your struggle and Nathan's through flickr. I just wanted you to know that you are on my mind and heart daily, and that your family is in our prayers. We've also passed your blog along to our church family so that they too can be raising you up in prayer to the Lord. My heart hurts for you as I read your blog, and yet God's grace and mercy is so evident in your words . . . a song I knew as a child just will NOT stop running through my head as I think of you today. "I cast all my cares upon You. I lay all of my burdens down at your feet. And anytime I don't know what to do, I will cast all my cares upon You." - a verse out of the Bible that I believe Steve Green put to music . . . We don't know you but we love you in the Lord and are praying for you.

TracyVDM on May 15, 2008 at 8:55 PM said...

We are still praying for you many times a day, Amber. I wish I could give you a hug, and sweet little Nathan, too.

mollie on May 15, 2008 at 11:45 PM said...

hey...Just want you to know we are thinking & praying for you daily! That boy is just steals a bit of my heart with every picture I see!! He is so sweet and his big sisters are gorgeous, too. Love you guys

oh amanda on May 16, 2008 at 12:30 AM said...

Haven't stopped praying.


Anonymous said...

Oh Amber, your writing is so beatuiful and inspired. I am just is aw on how you are coping, the beatuiful people that are here touching your life and your strength in Gods love.

It is wonderful you were able to go on a mini vacation to sea world with the family.

I am just so sorry, and am sending prayers to you and your family.


Mom of TWO Princesses on May 16, 2008 at 8:46 AM said...

I'm so glad you are getting support and the peace you need, through various sources. Your whole family are always in my thoughts & prayers.

Erin Faubus on May 16, 2008 at 11:51 AM said...

This is Erin Norton (hope you remember me!) My mom told me about your blog and I have been reading it ever since, but I hadn't read it in a few weeks and just today read about Nathan's confirmed illness. My heart is overflowing with grief for you, and I cannot comphrehend what you're family is going through. I will be praying even harder for you. I also wanted to share a blog with is my cousin's who recently lost her baby girl to Trisomy 18. Her blog has touched many lives and I think that God has used it as source of comfort for others going through the same sort of I believe He is doing with yours. The link is:

It has been too long since our care-free days riding fourwheelers and having sleepovers in West Texas! You were always such a sweet and special friend to me, and I am glad to have found your blog and be able to pray for you during this hard time.

Dawn @ My Home Sweet Home on May 16, 2008 at 10:49 PM said...

Hang in there, honey. The Lord will sustain. I'm thankful for those he places in your path.

The Whitsitt Family on May 17, 2008 at 3:52 AM said...

I just got caught up on your blog after a few days of not reading. We will be keeping your family in our prayers. The pictures you have been taking are so beautiful. I love the Einstein t-shirt. He looks so precious!

phaedra on May 17, 2008 at 8:44 PM said...

I'm thinking of you and your family almost constantly. Lot's of love and admiration,

The Princess on May 18, 2008 at 10:24 PM said...

Once again, Amber, you have a way of comforting us with your words and your faith in Him. You and Jay continue to be such an encouragement to us all! We continue to pray for you all daily...and the smooches from Nathan today were so sweet...not to mention the laugh that just melted mine and Phillip's hearts!!
We love you guys!

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