Tuesday, December 28, 2010

A little break from Christmas pictures......

I wanted to post this simply for my own journaling purpose.... I don't want to forget this and want to be able to look back on this one day when I need a little "reminder" :)

Sunday as we left from church IT happened, all of the fun from our weekend caught up to him. The second Jason went to buckle Bubba’s car seat he started to seize. They were bad, they lasted a LONG time. {the doctors have increased the valium but it doesn’t seem to be enough} They finally stopped in the evening and gave his sweet little body relief. That night was rough, he was in a lot of pain. I sat up with him in the living room trying to comfort him, but nothing seemed to help. The next morning my arms ached from holding him, my chest hurt from him rubbing his face against it, and my heart hurt for my little boy.

I enjoyed Christmas very much {if you can’t tell by all of the pictures} but I have to say that “something” has been in the back of my mind. You see, Bubba has been getting “worse” in some areas. One day on the phone while talking to a team member from our doctors at the National Institute of Health {in Maryland} “something” was said that I just can’t get out of head. Remember how I told you about Bubba having a hard time swallowing/ breathing at night after getting “buddy” button put in? Well, the suction machine is not helping like we had hoped. In this phone call Debbie, who has become a friend, put it in real terms. “Julie, remember how scared you were of Collin getting the feeding tube?…. Now look at how big he is and how it is helping him. Well, I just want to prepare you that he may need a trachea ….and just like the feeding tube it may seem very scary at first but it could be very good for him.” I am grateful for honesty in every conversation with me but I have to say I was no prepared for that. I new that things were getting “worse” but I just can’t imagine him with a piece of plastic sticking out of his throat. So, this visual has stuck with me over the Holiday.

As I held him Sunday night and watched him struggle so much I thought to myself…. Well, if something/ anything can help him that it has to be good. I poured my heart out in prayer, there in the living room, while holding my baby. I prayed for comfort, understanding, and strength.

Tonight I finished putting away the last of our Christmas decorations. While cleaning I swapped out the new photographs that we had received from family. Oh, I LOVE getting family pictures as a present. While taking the photographs out of one frames a picture fell to the ground. It was a picture of Bubba in the hospital after his birth. We were unable to hold Bubba for a while because he was so sick. This picture was one of the first taken of me holding my baby, my tiny little boy. As soon as I looked at this picture I burst into tears. I remember how scared I was and how terrified of the future I was. I remember how grateful I was just to hold my baby in my arms. Then my mind went back to Sunday night, I was scared and terrified of the future. I can’t explain it clearly in words but the comfort that this simple picture gave me is just what I needed. God answered my prayers with a picture. He reminded me that I have been there before and I made it through with him by my side.

I take great comfort tonight in this scripture

John 14:18 I will not leave you comfortless: I will come to you.


Jessica said...

Praying for you!!!! Remember, HE will never leave you nor forsake you! He will give you strength to make it through! Hope you have a happy new year! :) God bless!

Anonymous said...

julie, our heavenly father is here for you... he will not leave your nor the rest of your family. you will look back at this one day and say "he was carrying us"... remember the footprints in the sand poem. i have admiration for you and the strength you have. your a beautiful mother and god couldnt have picked anyone better for bubba.

Rochelleht said...

Oh, this post was so beautiful. I take so much comfort in the fact that God does not give you more than you can handle. He always gives us a way to do it all. I know you can. And in the process, you are inspiring so many others to do their best with what they have been given. Thank you for being such a faithful instrument in His hands.

Mandy said...

It is amazing how He helps us and nudges us along the way. Caleb had an NG feeding tube(down the nose) for the first year of his life. We just kept hoping he would eat. When he was 9 months old he had his first set of ear tubes put in, and while in the operating room they put some horrible tape over the tube to keep it in place. While in recovery I tried to pull the tape off and it made his poor little cheek just bleed. I was in tears, and overwhelmed at the moment. Another mother quietly came over and said they had gotten their child a G-tube, and it was the best thing they had ever done. That was the push that made me start the process of getting his g-tube. I had such another experience when he had his last shunt replacement, it took having him so sick he couldn't keep anything down, and made me take him to the ER, where they discovered his shunt was not working--unrelated to the sickness. But I think it had not been functioning for over a year and I think He was so weary of watching Caleb suffer that He gave me a big push :) This road we travel is so difficult and often times very lonely, which very few truly understand but He is always there to help us and knows what is best for our boys. Just a side note I had to teach RS on Sunday and one of the talks was the one by Elder Holland. And in that if you remember he thanked the the "selfless parents who perhaps for a lifetime, care for a challenged child, and sometimes with more than one challenge" it hit me soo hard. I started crying before I started the talk, and cried through the whole thing--so embarrassing. But it was just nice to be acknowledged in such a way, when somedays the path seems so dark. My thoughts and prayers are with you as you navigate through these new possibilities, that will help your Bubba.

Michelle said...


I am so sorry that times are difficult for Collin right now, but I know that Heavenly Father sent him to the perfect mother and family. He is lucky to have you loving and caring for him. Please hold him a moment for me...


Rachel said...

How He loves us! I know He knows your heart.

I am so thankful that we live in a time where God can use technology to help.

Praying for physical comfort for your boy. For relief, for rest, for recovery, for healing.

Praying for wisdom for you and your husband. Praying that God will put the perfect medical staff into your days... to speak to you through them, through His word, and to your heart.

And as always - thankful that you are Bubba's mommy.