These two pictures will always be near and dear to my heart as many others will be.
This was going to be a journal entry but I felt an impression to blog it. I wish I had a better way with words as so many of you bloggers do.
The fact of the matter is we are doing great but great is only our interpretation of life. Our home has never been filled with so much love, happiness and peace. We have once again been reminded how precious life is and how much we take for granted. Owen has never been happier. The last few weeks he really hasn't stopped smiling and we go to him to draw our strength. He is showing signs of being weaker, which breaks our hearts but his spirit is even stronger than before. The truth is, our lives and our family would be empty without Owen. We know one day he will be gone and we will have to draw our strength from our Heavenly Father alone. We know Owen will always be somewhere near.
We really are doing well and as Owen loses the ability to move his wrists and fingers, he has gained more mouth movement. It is so cute and funny. When I pick him up to hold him he makes 'kissy' sounds. Last night he played with his tongue more than he ever has. I could not stop laughing, and he knew HE was making me laugh. We enjoy and celebrate the small things.
All of our emotions have re-surfaced the last few days after being asked to talk to a PICU family facing some of the very same decisions we had to. Our hearts are broken for them. Whoever imagines having to decide to deal with death now or later for their baby? When you are going through it yourself it is so hard and you just hope and pray nobody else has to go through it, even though many families do. Please pray for this family, that they will have the spirit of peace with them as they face this difficult decision with their sweet little angel.
I can't imagine my life without be blessed with Owen. Yes, it would be much easier, less stressful and more normal. I would have missed out on so many things had this special boy not been brought into our lives. We don't know how long he will be here on earth with us but I pray we will never forget the lessons we have learned from him. We have been so blessed with the many people he has brought into our lives. It makes me think of the lyrics from the Dance by Garth Brooks. "Yes, my life is better left to chance I could've missed the pain but I would have to miss the dance". Maybe those aren't exact but I would not have missed this dance for anything.
I have been asked if I get the chance to attend the temple? (Not really and I hope the Lord understands.) The friend who asked me this question later came to our house, as she walked in by Owen, she said "you don't need to go to the temple, you have the same feeling here." He really has lifted the spirit in our home. We are no where near perfection but Owen gives us a good reason to strive to do better.
I pray we are taking advantage of every moment we can with him and our other children. If I could just remember that tomorrow does not hold any promises for any of us. With the Christmas season here I just can not help but be thankful for and to my Savior for blessing me with the life that he has.
I bought this wall hanging set before Owen came to the family, I finally hung them up last spring. After I hung them, I stepped back to make sure they were straight. As I read the words in the order I put them I was struck with the realization that I had put my children in order without knowing it.
This last spring when Owen had not done well, and it seemed we couldn't get him healthy and keep him that way I had a feeling to talk to Bentley. I worry about him because he has such a soft heart but tries to hide it like his Dad. One day Abby was with Lenn so I took the opportunity to talk to Bentley about Owen. I asked him if he ever worried about when Owen passes away, or if it scared him? His answer blew me away and I knew why I had a strong impression to talk to him. He said, "no, won't he be resurrected just like Jesus?". I was shocked! No wonder we are told to have the faith of a child.
I have wanted to plant a little grove or garden in honor Owen. After talking with Bentley we both walked outside to look for the perfect spot to plant the trees. I thought of putting it in a quiet corner, but Bentley said why don't we put it somewhere where Owen can go when he gets older? With that in mind we planted the trees out front, just off from sidewalk.
The day before Owen had his first birthday Lenn's cousin came to visit. Abby does not know him well. When he came in, Abby quietly asked me if he was the man coming to take all of Owen's machines aways. I told her no and asked why. She replied, 'because tomorrow he is turning one'. She has always had hope that her little brother would one day give all of his machines away and run off and play with her.
Owen's love that he brings to the family does not need a story behind it. When we think of Owen we just feel love.
We are a family that have learned we have no control of our future. We are taking it a day at a time and enjoying the ride.
Lenn and I have four children. Two of which were born with a very rare muscular disorder. Neither one have an exact diagnosis but it is some kind of Spinal Muscular Atrophy.
Our other two children are healthy and active.