Sunday, June 22, 2014

FSMA Conference



Wow! Its been a week since we arrived back from the conference, and I am just now feeling like we are getting back to our “normal” around the house. We had such an amazing time at the FSMA conference and I wanted to let you all know a bit about our trip!
We received a scholarship from The Pennington Foundation to attend this year’s FSMA (Families of Spinal Muscular Atrophy) conference in Washington, D.C. We knew this was such a fantastic opportunity, and we had to take advantage of it. In the weeks leading up to the conference I had feelings of excitement and anticipation, but then just a few days before we were set to leave fear and anxiety overcame me. I think the reality of where we were going and what it meant finally set in. One night, as Beau and I were getting ready for bed, I remember just breaking down and crying to him that I was so afraid to go. I was afraid of what information I would hear or see, afraid to meet new people, afraid of all of it. All of the sudden I didn’t want to go to this conference. I just panicked. I prayed and prayed for God to take away the spirit of fear that overcame me. I prayed that He would guide our path and use this conference to provide us with wisdom and understanding of what He would have us do for our son.
We left on Wednesday afternoon and were set to get in to D.C. around 11:00 pm.  Our flight was delayed, as flights often are, and by the time we waited in line at D.C. to get a taxi and arrived to the hotel it was 2 am. We were all exhausted, but thankfully, Steele was a trooper. He just went with the flow. I think he was happy to be on a new adventure.
We slept in late the next morning, and by the time we all got ready it was time to head to the very first event of our day. It was a general meeting for all of the “Newly Diagnosed” families. That is anyone that had received a diagnosis of SMA within the past year. We started at the registration desk were we were immediately greeted by a man that introduced himself and welcomed us to the conference. He told us a little about his son, who was sitting on the counter down the way. He was a bit older than Steele, probably about 8 or 9, but I remember looking at how he was sitting and the way his legs were positioned and thinking, “Wow, he reminds me of Steele”. I remember the man telling us that we were going to love it at the conference, and he said the best part about it was that you find that “you’re not alone”.  I didn’t completely understand what that meant at the time, but it would be something I would learn and believe during the rest of our time there. We proceeded down the hall where we dropped Steele off in the children’s program. It was a huge room and the floor was covered in sheets and toys. In the background, a movie was playing on a huge projector. I remember looking at that room and thinking, “Wow! They get it!” You have to understand that I’m that overprotective mom that lays out every little detail for anyone and everyone that I ask to keep Steele. I remember putting him on the floor, looking around at the other kids in the room and I didn’t have a need at all to give the people the 10 minute run down about Steele. I knew I didn’t need to tell them that they had to be careful when they set him down because he might fall over. I knew I didn’t need to tell them that he might not be able to make it all the way across the room to play with a different toy. I just knew that they knew. I just had a peace about it. I am so thankful for the volunteers that gave up their weekend to spend time with our kids in that room.  
Then we went to our first meeting. It was a general session that would explain what we could expect from the weekend, introduced us to members of the FSMA board, and briefly educated us on the basics of SMA. They welcomed us to the “family we never expected to be a part of”.  It was in this room that any and all fear that was left in me was gone, and instead I just felt comfortable. After the session, we headed to a “meet and greet” with the other families. Within the first 5 minutes of being in the room we were approached by a mom that we had been communicating with via facebook. She was one of the first moms to reach out to us when we received our diagnosis. Although we hadn’t met before, it felt like we had. She was open to any and all questions that we had, and really gave us a lot of good tips and information on what we could do to help Steele. I am telling you these parents deserve a PhD in their kids! They are so full of valuable information about SMA. We talked to a few other people before it was time to go to our first session called Optimal Care. It was broken into classes based on the type of SMA your family member had, and there was also a grief and loss group. That was difficult to see, it became very “real” at that moment. That this diagnosis takes so much from these kids, these families.  We gathered what seemed to be a wealth of information in that hour and a half meeting and at that point I had this overwhelming feeling of thankfulness to be there. I was so glad that we pushed through and came to this conference. I knew then that we were exactly where we were supposed to be.
After that meeting it was time to get Steele and head to the “family fun fest” where they would have a carnival-type set up complete with games, prizes, toys, and food. This was another time in the conference that I just felt welcomed with open arms. One of the first things you notice when you walk in…wheelchairs! There were so many people, of all ages and sizes in wheelchairs or strollers. Some of the kids were pushed around with medical equipment, some had manual chairs, many had power chairs, and everyone was just having a good time. The researchers and doctors were also present at the fun fest, and participated in a wheelchair race against the kids. I will say that those kids knocked the socks off those researchers! The kids had a blast (and I think the researchers did too). Steele traveled around to the game area after a while, and of course, chose only to play the games where he could throw something at something else. So, not only was he able to throw things (way up there on his preference list) but he earned prizes to do it. Win-Win. To say he had a blast is an understatement.
The next day was day 1 of the general conference with all of the families. The day was broken up into general sessions and workshops. There were about 36 different workshops offered over the next two days! We were able to pick and choose which sessions we wanted to attend. Beau and I took on the “divide and conquer” mentality and attended separate workshops to get twice the amount of information. I am really glad we did. We were able to get information about type II in general, therapy ideas, nutrition for type II, information about breathing, toy adaptation, and Steele and I even attended an aquatic physical therapy class while Beau was in a “dads only” class. What we learned is that there is so much we could be doing to help Steele now that we haven’t been because we just weren’t aware! Knowledge is power! We took notes like crazy and knew we would have our work cut out for us when we got home.
That night, we had a research poster session followed by a dance party! The research poster session was fantastic because it put us face to face with the people that are working like crazy to find a cure for SMA. They informed us that it takes about 10,000 ideas to get ONE drug to go through each of the steps necessary to gain FDA approval. The researchers are SO CLOSE with TWO different drugs right now that seem to be beneficial to people with SMA!!  It would be so amazing to have a cure for this disorder.
Now stick with me on this part, because it might sound a little silly. We went to the dance party after the poster session, and if I’m totally honest that was my emotional breakdown. I couldn’t believe that I had sat through the workshops and learned what I did about SMA and didn’t shed a tear, but here we are at this dance party and I am crying in the middle of the dance floor! I know that it was tears of joy to see all the happy faces of not just my own child but every child in the room. I really felt that feeling of family. I had a connection to those parents. I had a connection to those kids. There was just joy and love in that room. It overwhelmed me. So what did I do? I kept on dancing. Dancing and crying. Dancing and smiling. Dancing and laughing. With my husband, my son, and my new family.
The next day was more sessions. More information. I remember laughing with Beau saying, “Did you ever think you would be so excited to sit in a room and listen to a presentation?” We just craved the next meeting, and the next.
Our last night was pj and movie night. They provided snacks and again sheets and pillows to be spread out over the floor. They played one of Steele’s favorite movies, Monsters University, and he was so excited! We all sat on the floor, the kids and parents, and while the kids got to snack and watch the movie the parents got to chat. I just can’t explain the feeling of being around others who just understood and were going through the same things we were. And those words came ringing in my head, “you’re not alone”. Please understand that I know God is always with me, and I am never alone, and God is MORE than enough for me. It was just a bonus for me to have connections with these families that were experiencing life in a way that was so similar to mine.
So we are home now, and like I said before we have our work cut out for us. We learned about some medical equipment that could help Steele when it comes to breathing and sickness. As many of you know, he has been battling sickness pretty consistently lately. And when he gets sick its not your run-of-the-mill cold. It is EXTREMELY difficult on his body and strength. It basically has been knocking him down. It can be hard for him to clear secretions and because of that hard to breathe so he fights hard. There is a machine called a cough assist which could basically help him to cough and get the junk out. Then, there is a Vest that he can wear that will shake the junk loose in his lungs. So, our first project is to get a hold of those pieces of medical equipment.
 We also found out several new ideas for therapy, and learned that we need to drastically increase the amount of time per day that Steele bears weight. This is beneficial to his bones, spine and hips. At this point Steele is only able to bear weight with physical assistance from someone else. Trying to entertain an almost two year old, while helping to physically hold his body up, while competing with his desire to just sit because its easier is not an easy task. Thankfully, I know a bit about behavior and what motivates him so I have that to my advantage. I am up for the challenge! Eventually, we would love to try to get a piece of equipment called a stander that would hold him in a standing position allowing him to bear weight so that I could have my hands to play and entertain instead of helping to hold him up.
Along with that we are exploring some diet options for Steele. Nutrition for SMA can be a bit tricky because its an area that just hasn’t been studied as well. You would think that since his body lacks the ability to produce protein to build muscles that you could just feed him a bunch of meat to make up the difference. This is not the case. Too much protein can actually be harmful to his body. So now our goal is to find what works best for his body.
I will say as much as we enjoyed the conference there were some aspects of it that were just flat out difficult. I learned and saw many things at the conference that just made my heart ache for Steele. I don’t want to watch his body lose to this diagnosis over time. We won’t just sit back and let it happen without a fight. So, I’m asking for prayer. Please pray that God would continue to work in our lives and provide us with the guidance and wisdom to make choices that would honor Him. Please pray for my strength as I continue to work as often as possible with Steele to maintain and improve his strength. Please pray that we would not grow weary. Please pray for the researchers and doctors and their families as they work to find a cure. And please continue to pray for healing over Steele’s body.
Thank you all, so much, for EVERYTHING you are doing for our family. 

Here are some pictures from our trip :)

Family Picture on the Airplane
Arriving on Day 1 of the Conference
 Family Fun Fest!!

Taking a lunch break between sessions
 


 View of the hotel from the elevator
 Steele LOVED riding the elevator
 Enjoying the Dance Party!!!



 Headed to the PJ and Movie Night
 Father's Day Picture
 OUT!! Sleeping on mommy and daddy on the plane ride home.




 

WInner!!! WInner!!!!

WE HAVE A WINNER!!

Congratulations to Cindy Boggs of Farmerville! We thank you and we look forward to designing, building, and installing TEN THOUSAND DOLLARS worth of cabinets to your home! We want to thank everyone involved! Everyone who bought a ticket or more than one ticket! The Fundraiser was a huge success! We BELIEVE God has blessed our little boy and has also given us a community that has rallied around Steele. Between the t shirts, bracelets, hats, coozies, and tickets, it seems like the whole town of Monroe/West Monroe had some sort of involvement! We cant thank you enough. Continue to pray! Continue to believe! Together as a family of Gods Warriors, we are watching miracles happen!

We plan on posting a few blogs in the next couple of days! We apologize for such a long update! One reason was because we wanted the first blog that came up to be about the cabinet makeover or giveaway and t shirts; and as crazy as it sounds (I'm sure none of you have had this happen with a 22 month old.... haha!) it seems life turned into a rat race in March, April, and May. Whether Steele was sick, or we had out of town doctor visits or appearances with Steele promoting the Give-Away, it seemed like every time we had a spare moment it was midnight. SO! Having said that, we are going to make up for it! Get ready to read, and be amazed! Lindsay and I will be updating you on the past three months in the next WEEK!

Again, we cannot thank you enough! God Bless you all!

Tuesday, February 18, 2014

Raffle and T-Shirts


    First, let me start off by saying WOW! We raised just over $4,000 on Saturday and Sunday at the Home Show!!! Thank you to everyone involved! Thank you to everyone who donated! Thank you to EVERY SINGLE person who prayed! Most of all, I thank God for the blessings of yesterday, today, and tomorrow. Without Him, none of this would be.

  

Raffle/T-Shirt

Steele Becton Fundraiser Details

 

Cabinet Makeover provided by

AWT Custom Cabinets & Closets

Cabinets valued at $10,000 – can be used for closets, kitchen, etc.

TOTAL VALUE – APPROXIMATELY $15,000

 

Included from AWT:

Paint grade Kitchen and/or Bath and/or Closet and/or Garage storage Cabinets

No more than 40 linear feet of bases & 40 linear feet of uppers or 27 feet if tall cabinets

A complete set of CAD drawings to scale detailing design of Cabinets

3¼” crown molding on cabinets is included

Removal of existing cabinets

 

 Additional items included:

Granite (80 square feet), A or B Grade, donated by Louisiana Stone

Fabrication, installation and S/S sink provided by Twin City Granite

Materials ($400 value) & Labor for back-splash provided by Acme Brick & Tile Company

S/S Faucet donated by Coburn’s Kitchen & Bath Showroom

Paint & painter for cabinets only provided by Sherwin Williams

 

 NOT INCLUDED:

Sheetrock repair not included

Fixtures and appliances not included

Wall paint and/or painting not included

Flooring not included

 

 Thanks for your participation and we look forward to working with you. 

 

MUST BE USED BY APRIL 30, 2015.  ONE HOUSEHOLD USAGE/NO CASH EQUIVALENT

 

Winning location must be within 60 mile radius of Monroe

 

Raffle tickets are $10.00 each or 3 for $25.00

T-Shirts

$20 for Adult sizes Small-2X Large

$15 for Youth sizes X-Small-Large

 

IF you would like to purchase a raffle ticket or a T-Shirt, please contact one of the following:

Beau Becton 318-267-2066


 

 

Lindsay Becton 318-557-1556


 

 

Vicki Fletcher 318-381-0713

Email is vfletcher@progressivebank.com

 

 

Forrest Fife 318-376-9261


 

 

Diane Miletello 318-376-7177


 

 

Penni Aulds 318-614-0168


 

 

Thank you again and we will be updating our journey soon!

God Bless!

Thursday, February 6, 2014

Emotions

Emotions

       Over the past few weeks I can say one thing is for sure. I have been riding an emotional roller coaster. It all started "That Day". I have written about that so I wont go back to it because I have explained as well as I could how I felt. Emotionally, none of this is getting easier. God is so amazing though. HE is ALWAYS there. HE gives me strength when I am weak. HE gives me hope when all is gone. HE also gives me my wonderful wife when I cannot do it alone. Then, when all else fails and blue is the only color I can fabricate to tell you how I "feel"; Steele is right there, smiling, saying dada, bubbles, thank you, throwing balls, begging to go outside, and best of all, when Steele gives that hug that only Lindsay and I can tell you about.





                                                    
 Anger

      Lindsay talked about Dallas, and I want to give you a little bit of what I felt. I wasn't as nervous or full of anxiety or even the least bit afraid of what they might tell me. In fact I WANTED THEM to tell me something DIFFERENT. As you read in Lindsay's blog though, they really didn't tell us anything we didn't know.
    
     Lindsay was overcome with emotion that day. I was filled with ANGER. The longer the day went, the bigger the animosity became. Not at God, not at the doctors, not at me or Lindsay, not at anyone really. I was just MAD at something or better yet, EVERYTHING. To have a doctor tell you that your son looks great. He is so smart. He has the BEST prognosis. Then, look at you and basically tell you that you have to be ok with possibly outliving your child. A doctor had just told me his prognosis is GREAT, these "kiddos" are living into there 20's, 30's, and 40's all I could think was.... WHAT? How is THAT great? I remember looking at Lindsay when they said that. I was dumbfounded. Having said all of that though, we did have a wonderful experience there. Everyone was nice and really genuine. I just wish they could say that different, or not at all. I know it bothered Lindsay because her phone call after we got into the car all but spelled it out. I just remember thinking my wife and my mom are really upset, GOD give me the strength to be strong. I still had to call the other parents and grandparents. So I did. For fear of upsetting everyone in the car again, I simply said we didn't learn anything new. I think after a few seconds my dad got it. He said ok... I will talk to you later, but not before a wait... what did... nothing.. I don't understand. It was a long ride home. I was Mad.

JOY
   
     Next came Christmas and boy did we have a good one. We bought Steele waaaaaaay to much, and Santa BROUGHT him waaaaay to much. We had our first Christmas in our house. We had a lot of fun with family and Steele got to play with cousins. I am pretty sure the first Adalyn/Steele/Shep sandwich was created at one point. They had a blast. At one point the joy disappeared for me. I was watching the kids play. Adalyn and Shep were bouncing around going from here to there, and Steele was just watching. I know Steele is so smart. I know he was trying to figure out why he couldn't do what they were doing, but I quickly prayed to God to release that. He did. Joy came back into my heart. The only part I guess I wish I could have changed was this next sentence.We didn't get to go to Arizona. We had plans to, we wanted to, but we would have to drive, because it was just too risky flying during flu season. We did get to Skype. We found out Steele is going to be another cousin. Aunt Lacey and Uncle Banks are pregnant!! THAT is amazing! We cannot wait to experience that with them.

Gratitude


     This is where I feel like I need to thank a few people for the things they have done. First our family has not only been there, but they have gone above and beyond what is expected. My Mom has helped more than we could have ever asked for. She has been there when we needed someone to keep Steele on a schedule and at the last second. Momma Kim (Lindsay's Mom) has sent money for us to stay in hotels when we go out of town for visits. Her Grandparents and Aunts and Uncles have sent money for extra expenses. Aunts and Uncles have sent care package after care care package to keep not only Steele entertained, but just so happens I enjoy blowing bubbles and playing the games too. I just cannot fit into the little clothes at this stage in my life. My Dad has done anything and everything to do the same. My Grandparents, my second parents Doris (Stepmom) and Jim (Stepdad), and basically all of my family. I would also like to take a moment and thank Gretchen Kovac. She along with Alex Hayward, Vicki Fletcher, Paul Stephenson, and the rest of the homebuilders association have created an account for Steele at Progressive Bank. They are also helping raise money at the home show for Steele too. My family has also opened an account at Regions Bank. We will also be auctioning off a kitchen at the Home Show at the Civic Center. The kitchen or cabinets will be worth $10,000.00 dollars. The raffle will be decided by the homebuilders. For more information contact me at Beau_Becton@yahoo.com .





We will be making T-Shirts to sell. Rodney Noland came up with the design that I explained to him over the phone that came out exactly like what I had envisioned. Reflections, who will be making the shirts is also donating .50 cents per shirt sold. Steve Sills along with many of my family and many others also made donations for Steele and we thank them and everyone else who has, plans to, or just says a simple prayer for Steele. I CANNOT express the gratitude I have for these people. I know I have forgotten names but I have not forgotten you. Thank you.

     We also bought a new Toyota Sienna, and without my Dads help, it would not have been possible. Well I say that, but... I guess I have to say the one we bought would not have been possible. We had a van picked out. With down payment and rebates, we were right about where we were with the car as far as payments go. The Monday before we bought the van, I received a fax with the van we had picked out. Before I read the fax, my dad saw the fax  and asked me if that was the van we were getting. I said yes. He said no it isn't. He pleaded with me to please let him help us purchase a van that Steele could enjoy. My dad talked to Doris then gave me a raise to cover the rest of the monthly payment that we not have been able to afford. So... We ended up getting a van with a few more "nice" things to accommodate Steele now and in the future. We didn't want any handouts. We still don't. We are greatly appreciative of the things that people are doing for us. So, today, I thank not only my family, but everyone. We thank you for thoughts, for prayers, for donations, and for any contribution however it is made. God bless.
 

Defeat
 
     I thought I had the strength. God is always there, but I thought God had given me enough to overcome any defeated feeling. Sure, I have had and still do have moments that THIS is extremely hard, but for the most part, God gives me the strength. We had Steele's check up with his Neurologist. The whole day I knew it was coming. I couldn't stop the anxiety building. I was going back to the place where this all began. I was going back to sit in the same office where the doctor looked me in the eyes and told me Steele had Spinal Muscular Atrophy, and that he would most likely never walk. Then, in a split second thoughts became reality. We drove up to the building, I parked in the same spot, I walked through the same doors, sat in the same seat, and waited. I held back my tears. I would look at Lindsay and then at Steele and realize what God have given me. Then we were called back. We walked into the same room, they did they same measuring, weighing, questioning, and then we waited. I cannot even give you the word to describe what was holding back my emotion. I just hugged Steele has he played with the head measuring tape. The Doctor came in and was SOOO IMPRESSED with Steele's progress, then he was SOOO IMPRESSED with his intelligence. He even called him Dr. Steele, and said THAT was his NEW name! He called in his assistants and bragged on and on about Steele. Confirmation that I thought he was smart. But yet I was STILL crushed.


Hope/Faith

     Lindsay and I pray every night for divine healing. We pray for God to give man the ability to produce a cure. We pray for friend's and family's health and well being. We pray for specific people and situations that we know of and we also ask God to help those who we don't know. We put Steele to bed after hugs and kisses. Lindsay walks out of the room. That is my special 5 minutes with Steele. I put my hand on his back or tummy. I lean over his crib and I talk to God. "God let my hand be an extension of yours, heal my son like you would your own for he is your own, I ask you God to let my son walk in the light mentally, spiritually, and physically to do your will and spread the good news. If it be your will, let it be done. I am merely Steele's earthly father, for you are mine and his in heaven, so I bring the faith of the mustard seed to you tonight, and tell you as you have given me the ability to do even greater things through you than Jesus did, to take this abnormality in my son, and make him whole in your image like YOUR SON Jesus. In Jesus Name, Amen." 


Sunday, January 12, 2014

An Hour Turned Into a Month...



WOW! So much time has passed since our last blog post, and yet it doesn’t actually seem that way. I guess the past month or so has been a blur for us. We have definitely had some major ups and downs but it has brought us to today and for that I’m thankful. So, I guess its best to start where we left off….

We had Steele’s doctor appointment in Dallas on December 16th. It was an afternoon appointment, which gave us time to hang around in Dallas for the morning. We decided to spend our day in the Galleria. I remember just feeling anxious all day. Beau and I weren’t ourselves that day, but we found plenty to look at in that mall to pass the time. Appointment time came, and it was overwhelming just to walk in the front door. I can remember looking at all of the families and children there and wondering if they all felt the way I did.  I had been reading a devotional around that time that said “worry is the facade of taking action when prayer really is” so I began to pray. I was in and out of prayer all day that day. We were eventually led into a room where Steele was measured, weighed, tested, evaluated, etc. We must have met at least 10 different people that day, all to be a part of our “team” in Dallas. I have to say this about each person we met…they were so kind and genuine. I am so thankful that God placed each of them in our path. I know that we have a great team that is going to care for our sweet boy. Although we didn’t learn any new information that day, I will say that it has been my most difficult day in this journey so far. Steele was tired by the end of the appointment so Beau’s mom took him into the lobby while Beau and I finished up meeting with and talking to new people. By the time we left, Steele had fallen asleep. I felt numb as I exited the office. We decided to hit the restrooms before we left so I went first, and then took Steele, still asleep, from Beth Anne. It was at that very moment that I literally felt my heart physically break. I had never had that feeling before, I was wishing I was still numb. I fell to pieces. I am so glad Steele was asleep because I don’t want him to ever have to see me like that. I am usually a very shy, reserved person and would have loved to wait until I got to the car to bawl my eyes out. That didn’t matter that day. I cried and cried as we walked out. To this day I don’t have an understanding as to why it hurt so bad that day. As I said before, they didn’t give us any new information as far as the diagnosis goes. We were encouraged to start the process of getting Steele a wheelchair.  It all just hurt. The next part I am going to tell you is my most favorite moment with Steele to date, and a moment I will never forget. It is how I know that God is always with us. We stopped at a fast food restaurant on the way home. Steele had a dirty diaper so I took him into the restroom. They didn’t have a changing table in there so I improvised. I sat on the floor, laid Steele on my lap and changed him. When I was done lifted him up, pulled my knees up and sat him on them so we were looking in each others eyes. I swallowed hard and told him “I love you so much” and he put his arms out as wide as he could and hugged me around the neck so tight that when I close my eyes I can still feel it. I needed that!!  God knew I needed that.
               
 We drove home that night and got in very late. I had to be to work in Shreveport early the next day. I was doing my best that day just to keep it together, but work was a welcome distraction. That afternoon I was driving to a client’s house when I was hit by a driver in a very large work truck. I remember the sound it made when we hit, and I knew when I heard it that it was bad. The rest of what happened is kind of jumbled in my mind. I know I called Beau, and then my mom. I remember saying to Beau “Why me? Why now?”.  I wish I could take those words back. I should have been screaming out “THANK YOU!”. My car was totaled, but I was able to walk away from that accident! Praise God! I believe that accident was a “blessing in disguise”. It has jump started our search for a new van, which we will need for the wheelchair. Also, I have great insurance and the other driver was insured! Again, another opportunity to give THANKS!





And what a time to be thankful for, it was almost Christmas!! Christmas this year was absolutely amazing! It was bitter sweet because we were unable to spend it with my family in Arizona, but Beau and I had a nice chunk of time off work and we literally soaked up every moment. We limited our access to cell phones, computers, iPads, etc. and just were together. We didn’t even really take pictures together this Christmas because we just wanted to be in the moment, as a family. I am thankful that family members captured a few of those moments for us. Here is one of Steele with his cousins....













New Year’s meant more time together as a family and more memories made. We went up to the camp and Steele got to ride around on a Bad Boy with his dad and grandpa Bull Dawg. He was asking to “go, go, go” all day. That night we watched fireworks that the other members of the camp set off in the distance. After Steele got used to them, I think he actually enjoyed them. That night he fell asleep by the campfire in his daddy’s arms…another moment I will never forget. 

 


 Since then, we are all back to our normal routine; work, doctors appointments, therapy, etc. We did as the doctors and physical therapists advised and got Steele some braces for his legs and started the process to get him a wheelchair. He is still adjusting to the braces. They add extra weight to his legs which makes crawling and moving a bit more difficult, but he just keeps on truckin’. I admire his fight. I try to put myself in his shoes with all of the appointments, and the braces, and the testing and I feel like I would just be done. But not Steele, he endures it all with a smile (most of the time). I am so proud to be his mom. I am so thankful God chose us to be his parents.  In his 17 short months on this earth, he has taught me more than I ever knew in my 27 years of life. He is such a blessing. We have a big road ahead of us. It will be filled with twists and turns, ups and downs, but I am ready. We are going to do this as a family. God is our strength, and our refuge.

Thank you all so much for your continued prayer. We have been overwhelmed by the outpouring of support and love!!


God Bless,
Steele’s Mommy
Lindsay