Monday, August 27, 2012

Learning to be


 
One of the things that I have found myself saying over and over for the past eighteen days is
 “I don’t know how to be without him,” 
For the past twelve years my world has revolved around my sweet boy. Every waking second of my life was in some way devoted to his care…. Everywhere that we went, everything that we did depended on Bubba and how he was feeling or if it were a place that he could go.  Each new day our activities were dependent on how Bubba felt and how many appointments he had.  My arms were constantly filled in some way, whether it was caring Bubba, the many bags that he was constantly attached to, or the other bags holding the diapers, clothing and other things that he required. My arms have never felt so empty; I don’t know what to do with them. Just walking has proven to be a difficult task. I have always had a wheel chair to push and all of a sudden I find myself walking with nothing to hold onto, nothing to do with my empty hands. My house is suddenly quite without the sound of banging doors or Bubba’s movies playing at full blast. I am not changing out bags or giving medications around the clock. There are no diapers that need to be changed or doctors that need to be called back.
It is an entirely new world that I have been thrown into and I have to learn how to be again. It is hard, oh, it is so hard BUT I feel my sweet boy traveling this difficult road alongside me. 
In those moments that I want to pull the covers over my head and sleep the day away he reminds me of my sweet and brave little girl. She has happily taken the back seat to Bubba’s care for eight years.
 
Now, it is her time.
 It is time for me to learn to be the mother that she needs me to be right now.  That is why we took the trip to get away.
{To anyone who had questions regarding this I want to clarify that our wonderful family made this trip possible with hotel points and paying for our outings. None of the money of that was sent for Bubba’s service was spent on this trip.}
Regan saw things that no little sister should ever have to see. She walked into our living room so see a crowd of people gathered around her Bubba working desperately on him. She bravely stood with us and kissed her Bubba on the head as he lay in a small wooden box. My sweet little eight year old girl is braver and stronger than anyone I have ever met. With all this strength that she has shown we also knew that there was sadness, worries, fears, and things that she needed to talk about. So, Hubs and I made the decision that getting her away from our home, where she had witnessed too much that night, would be the best way to start the healing process. She is doing well and adjusting to having all of our attention solely focused on her at all times. {I am sure at times it is driving her crazy.} We had good and bad moments in San Francisco. Shoot, we have good and bad moments every single day but the trip was just what we needed and it was a good starting off point for all of us.

I wasn’t sure what route I wanted to take with this blog. This blog has always been such a positive and happy place. Ok, at least in mind I feel that it is. ;-) Bubba’s has always had so many life stories to share and teach us all along the way. So, I have decided that this blog will stay just the same. It will continue to be positive. Yes, I will have my break downs here and there that I will share but for the most part I want this blog to continue to be a positive place filled with life lessons from Bubba and our new little family. I want to share with you this new journey that I suddenly find myself on of learning to “be” again.

Every day is hard but with each new day a new light and hope comes with it. I am still constantly learning from my sweet little Hero every day.
 
"If you change the way you look at things, the things you look look at change."
I will end today with the poem that he had in the program at his service entitled God's Garden.
God looked around his garden
and found an empty place.
He then looked down upon the earth,
And saw your tired face.  He put His arms around you,
And lifted you to rest.
God's garden must be beautiful,
He always takes the best.  He knew you were suffering,
He knew that you were in pain.
He knew that you would never,
Get well on earth again.  He saw the road was getting rough,
And the hills were hard to climb,
So He closed your weary eyelids,
And whispered, "Peace be thine."  It broke our hearts to lose you,
But you didn't go alone,
For part of us went with you,
The day God called you home.

14 comments:

Randi said...

Oh, Julie. Mu heart aches for you. I'm sitting here trying to type this correctly, but my eyes std blinded by tears. There is nothing...and I mean NOTHING...harder than what you are going through. Your sweet words brought back so many memories, both painful and joyful. It will get easier, I promise. It won't ever go away, but it will get easier.

I love you, sweet girl. My arms are around you, and my prayers are with you.

Randi

deb8able said...

I have followed your family for so long and am saddened to learn of Bubba's passing. I can't believe there would be questions of how any money was spent. You have dedicated your life to taking care of a sick little boy 24 hours a day - you deserve a trip - you deserve 10 trips. My prayers are with all of you!!!

Karen Hayes said...

Your family has been on my mind so much. I know this time has to be so hard for you all. We, too, have an Angel waiting for us on the other side of the veil. Looking back, I find myself wondering how I got through that time and realize...you just do what needs to be done, one thing at a time. Our loving Heavenly Father provides us with friends, family, even strangers, to help us. Our faith in our Savior and His Atonement are such a blessing and comfort. There are many people praying for you, as are we. Love you!

The Huss Family said...

That was really beautifully put Julie.

Anonymous said...

LOVE the poem! So fitting and so beautiful.

Katie said...

I have thought about and worried about these exact same thoughts about how you are coping with the time and the quiet. You are right.. it will take time and learning and adjusting. We are all here for you and appreciate the way you are sharing this with all of us. Love you.. talk soon :)

russandkatie said...

I'm a complete stranger but so touched by your strength!

Lori - The Other Last Unicorn said...

When I heard about Bubba my heart ached for you and your family and my first thought was how hard it was going to be to transition into a life with out him. I thought of little Regan and how she would cope. I am glad you are keeping this blog and continuing to share your journey with all of us. I pray that you all will be comforted by our Savior and know that Bubba will always be with you. You are an amazing woman and mother. Stay strong.

Palmyra said...

Oh Julie, I have been reading your blog to my hubby. In some places my voice would break, hurting thinking of what a difficult time this is for all of you, but most especially for you who was Bubba's constant companion in this life.

I've always been amazed at your strength and positive attitude. You are in our thoughts and prayers. It is a priveledge to know such powerful and wonderful spirits as you and Bubba.

Susan said...

Beautifully put, Julie. Bubba would be so proud that, just as you guided him in what he needed, he now guides you in what you need. My heart aches for that emptiness you feel. Anyone who has sustained a profound loss like this will empathize and know your feelings of disconnect with the new routine and the feeling of "NOW what do I do with myself?" The answers for that will come slowly as the new routine embeds itself in your days ahead. Your empty arms will feel their most useful wrapped around Jason and Regan at this point.
As for the money for the trip, I can honestly say that it wouldn't have bothered me at all if you used my donation for whatever you wanted or needed, including the trip. I felt certain that you NEEDED that trip!

Yes, there will be good and bad moments for the rest of your life, but you are the type of person who will elevate the good moments and downplay the bad even while acknowledging them. You still have much to teach, Julie, and with Bubba as your little Angel guide, you're still someone we want to hear those lessons from. We still want to see Regan's highlights because we've come to love her just as we came to love Bubba. Right now, we just want to pray you through this grief journey and let you know we'll be lifting you all up the best we can.

Anonymous said...

I am very, very proud of you and your strength. I know Bubba would be so proud of his momma enduring this difficult time as he endured so many. You are continuing his legacy as will Regan. No one will ever forget him through your words and spirit. I love you guys!

Dawn Marie

Rochelleht said...

I can't imagine. I sobbed through this post. It was beautiful. I admire you so much and just love your attitude and testimony. I have to teach the Plan of Salvation tomorrow in seminary. I will be talking about Bubba for sure. Love you!

Anonymous said...

Julie, im beyond proud of you and your ability to see thru the grief your enduring. You and your family will be in my prayers as i know the feeling of trying to feel the void. Bubba im sure is extremely proud of you. p.s. you use our donation in any matter you see fit. it would not have bothered me a bit for you to have used it for a family get away... you needed it.

The Gray Family said...

Julie, I wish I could give you a big hug right now! I am so glad you guys got to get away for a bit. Life is going to be so completely different for you with Bubba gone, and I don't know how you ever get over the pain of losing a child. You are one of the strongest people I know though, and if anyone can handle it YOU can! Hang in there...love you!!!