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Saturday, February 20, 2016

One Year SDR Anniversary!

Wow! I seriously can not believe it has been one full year since we took the plunge and went ahead with SDR. One of the hardest decisions of my life. Regrets? None! Hard work? More than you could ever imagine.

We have given it our all. I am actually proud of this entire family. We have all made sacrifices over the last year in order for Brendan to achieve all that he has. Three of the kids have lost their mom and baby sister for 4 weeks over the last year, went on a road trip to St. Louis for their summer vacation for Brendan's post op appointment, and have helped entertain the younger ones while we have worked countless hours stretching, strength training and assisting Brendan.

Brendan has come a long way and continues to work hard. He actually surprised me with his attitude and willingness to stick with the program. It hasn't been easy, there has been tears, yelling, attitude but also laughter, pride and progression. He is 13 and doesn't always want to get off his computer to work out but he does almost every single day. He loves his break days but secretly also loves working out, gaining strength and trusting his body to do more things.

I am looking forward to the next year. He has a strong foundation and core strength and an amazing home work out plan. I can't wait to see what two weeks in Texas working with Mike Poole will do for him. It should propel him into the next phase of his progression. He will achieve more confidence which does wonders for him.

I am beyond proud of this child and love seeing what he is capable of. We will continue to work hard and to sacrifice so that he can achieve the utmost possible before he enters adult hood. Hard to believe in less than 10 years he will probably be on his own. my mind he lives a few houses down in a group home that we organize and help run. Only time will tell but I can't image the worry I will have once he leaves the nest. 

*****Look how far he has come since age 2: fisted hands and curled toes. Lots of therapy, procedures, surgeries and determination have paid off. You may not always realize how much everything really does for your child. If we did nothing I don't know what he would look like today. I presume his body would look entirely different*****

Friday, February 12, 2016


Okay I need some ideas! I am taking Brendan to Texas for two weeks for more intensive therapy. I am taking along my 18 month old since I think she is too young to stay behind for that long. Brendan does have money set aside but it won't cover everything. It will get expensive just feeding us for two weeks. Fortunately, I found a nice hotel with a great medical rate which offers free breakfast and even some free dinners! That will save a ton. The hotel also has a kitchen and there is a Walmart near by which will also make a huge difference.

I am looking for some ideas to raise some money. I didn't want to ask again under his go fund me since I asked for his surgery last year. I was beyond amazed at the generous amount given to us.

I am so excited for this trip. He gained so much from just one week in November. He has gained so much strength over the last three months with his new work out plan. I know 4 other families going at the same time which is so cool!

I still can't believe it has almost been one year since his surgery. Today, last year, his school had a going away party wishing him luck. That was one quick year even though it has been extremely busy,  well maybe that is why it was so fast !

Thursday, February 4, 2016

The Dream

I had 'the dream' again. A particular milestone has been creeping into my subconscious more and more since Brendan had SDR. I used to have the dream once in a blue moon, maybe a few times since he was born! But lately it has been much more constant. The dream is never the same like some nightmares can be. This dream pulls at my heart because I honestly don't think it will ever become a reality.

I dream that Brendan can walk. Completely unaided. No walker, no help from his mom and step dad holding him up. He just walks.

His walking doesn't exactly look 'normal' even in my dreams. I have no idea what he would even look like walking on his own. He really struggles with his right leg and I fear it will never be able to gain the strength it needs. Last night I vividly remember every second of the dream. He was sitting on the recliner in our living room and he just stood up and took these fast tiny steps, more of a shuffle, across the room. It was really fast like if he didn't move that fast he would fall down and he had this huge smile on his face. He walked, shuffled, right into my arms. I was kneeling on the floor across the room next to our couch and I started crying, sobbing uncontrollably. I was so proud of him and I just didn't expect it. I don't know if I will ever feel the emotions I felt in my dream but I can live with that.

This dream is bittersweet. I do not know if he will ever walk on his own even after every surgery, every therapy, every hour of effort he has put in over the last 13 years. While sitting here typing I don't know what to feel. I know he doesn't need to walk unaided. I don't live life wishing he would walk or hate that he is in a wheelchair or needs to use a walker. I have come to terms with his disability and am at complete acceptance. I am at peace with it all. I have come to realize I am a bit of a perfectionist. I tend to be an over achiever which isn't always a bad thing. Not to mention I am his mother so I can't just sit back and not help him achieve the highest level of mobility that he can. I feel as his mother it is my job to do everything in my power to make his life easier while I can. I know when he is an adult he won't have to work out and can sit in a wheelchair all day and there is nothing I can do. BUT if I motivate him enough and get him to 'want' it (to walk) then maybe just maybe it will happen and he will have a much easier life. I think since he has hit his teens I am starting to fear adulthood. It pains me to think about him living without me. Someone else taking care of him or someone not being there when he needs something. This fear has been with me for sometime but is definitely intensifying the older he becomes.

Life raising a disabled child is NEVER easy and a part of my heart will always be effected until the day I die. I love him with all my heart and I am so proud of how far he has come and apparently I secretly hope that one day I can share a video of independent steps for everyone to see and not just for my eyes in my dreams.