I am soooo excited that on Friday we FINALLY got Collin's new seating system and parts for his chair. It has been a huge battle..... yes, 7 months of fighting. I know crazy huh. You would just think that some things are common sense for an insurance company but sometimes... ok, every time seems to be a fight for him. wink!!! We decided to replace just the seating system instead of the whole chair because it saved us about 3 thousand dollars. It only ended up costing $3,000.00.On Friday morning bright and early I took his chair in and left it there. Then in the evening I went back with Collin and they fitted it for him. They were not ready for us when we got there. So, I had to hold Collin while he got VERY angry watching them take apart his "friend". After almost an hour they were done and Collin was ready to rock!! He was so excited to get into his chair and have it fit him the way that is should. He has had his chair since he was 3 years old and he out grown it a while ago. What a relief it was to walk out of that place knowing that another small mountain had been climbed. (We also got Collin's new walker. I will post a pictures of that latter.)
There are so many obstacles that come with being a mom of such a sweet boy. What would I say is the hardest?..... Is it the sleepless nights, missing out on events, the money that goes to meds, equipment, and 75$ a week in baby food, maybe it's the stares from people that we pass or the rude comments, feeling alone, the unknown, not hearing him talk, or maybe that he can't walk. Nope, the worst is the feeling of helplessness that comes with this hard calling of motherhood to a special child. What I mean by helplessness is that I often feel that I am at the mercy of everyone around me and there isn't anything that I can do. With Collin's wheel chair I was at the mercy of the insurance company and no matter how much I fought and cried it had happened at their time. When Collin is in pain I feel helpless. All I can do is pray and am at the mercy of my Heavenly Father to take the pain away from him. When another surgery comes up I feel helpless knowing that once again I will have to hand my baby over after the sedatives have kicked in and his sweet little body goes limp. I feel helpless when I see tears coming from his eyes while he sleeps. Wow, that is awful you must be thinking. Ok, yes it has hard times BUT there are some wonderful things about being a mother to a special child. As most of you know Collin turned eight on Friday. In our religion at the age of eight children can choose to be baptized. I was sad at the thought of Collin missing out on one more thing. Jason and I prayed, fasted, read our scriptures, and talked to church leaders about it. Collin is perfect and does not need that covenant to return to his Heavenly Father. He is truly perfect in God's eyes. Despite the conformation that we received the emotional sadness was still there. When I turned to my Saviour in prayer and asked him to take that pain and sadness away he did. In its place came the overwhelming peace and knowledge of how blessed I am to have a special child. I have seen so many friends and family members struggle with their children as they have been taken into Satan's grasp. I will never have to walk that path with Collin. It only makes me want to be better so that I can be with him in Heaven.
So, despite a very hard week and months of fighting I am grateful that this fight, the fight for his wheel chair has ended. We have been blessed with such an awesome tool to help with him. So, tonight I will take a breath... until the next fight!
9 comments:
I totally understand your feelings of helplessness, it is very frustrating. Caleb too turns 8 in October and even though his twin brother will be baptised we have made the decision not to baptise Caleb. That is hard in the worlds standards not to do but how grateful I am to be a mother to a perfect spirit. Hopefully Collin has a better week with his pain, so that you may all receive some relief.
Julie you really remind me of my Aunt and how strong she was. Thank you for fighting and loving as deeply as you do. I grew up being involved with the varying levels of disabled children and some people give up. I remember her struggles with finding a place for him at church and loved that after she passed on her partner has taken care of Michael as if he was his own and has made sure he will be with his mother in the next part of life despite not having the same beliefs. It was hard for him to understand at first but it was a great experience for me and my Mike to teach him about our beliefs.
Julie, you are such a strong, special mother to Collin. I'm glad that you were finally able to get Collin's chair taken care of. You have such an uplifting attitude and I really do admire you. I know that the decision about Collin's baptism was a very hard one for you and Jason. I'm glad that you feel peace about it now. We're not sure if Lily will be baptized in a couple of years or not, but if she isn't able to be, then I hope that I can feel the same peace that you feel. I can't wait for the day that I can meet you and your sweet family in person!
I know the milestones that come and go are hard for you. But Collin couldn't have had better parents and family. It takes a special family to care for special little people too. Your love and tender care are sustaining him. Hope Collin is better soon.
Julie,
I just wanted to tell you that I admire your strength. I was reading your post and it touched me so deeply. I know that collin is so special and so blessed to have such wonderful parents as you and jason. I hope that we can get together soon and that you have a great week.
Julie Carr
I couldn't agree more with what everybody has already said. Julie and Jason, you are truley the most amazing parents! Sorry to hear Collin has been having some real tough days. I hope he has much better days to come.
Julie, I sent Collin and e-card for his birthday and I must have your email address wrong. Could you please send it to me please. Thanks!
Big hugs to you all!
I am so happy that Collin's wheelchair is all updated! He is such a sweetheart and you are a fantastic mommy!
Julie - you are so strong!! It made me so sad to read about your struggles with Collin. But you are definitely a special child of God to be able to take care of such a special little spirit. You and your husband were the ones that were given this sacred responsibility - not anyone else. You seem to deal with the challenges that come along with it so well, I'm very impressed. It makes me want to be a better mommy to my kids by seeing what you deal with on a daily basis...
Okay - I'll stop now. :)
Btw - Aimee gave me your blog address... you can check ours out too!! We have just started it...
-Sara
Oh yeah, I forgot to say - I didn't know you made bows... I do too!! I have a little business that I'm working on! You should join the Yahoo group that I'm part of - tons of great stuff on it!! Let me know if you are interested!
-Sara
Post a Comment