Tuesday, September 6, 2016

When I Don't Know What to Say

Today hurts.

Almost every morning Steele and I go through his morning routine which always begins with breakfast, then stretching, and then a walk in the walker. While we do his stretching we read a devotional from his Veggie Tales devotional book, and then say our daily affirmations. Those affirmations end with Jeremiah 29:11-"For I know the plans I have for you,' says the Lord. They are plans for good and not for disaster, to give you a future and a hope." This morning started like most mornings. He ate pancakes, did his stretching, joked around with me, and talked about dinosaurs.

Then everything got hard. I put Steele in his walker with his tall boots on like I always do and I could tell his attitude was different. He walked a couple steps with my help and then he said it. "I wish I could walk, momma". He has made comments about not being able to walk several times in his life, but it has always been very matter-of-fact and there was no sadness about it. This morning was different. He looked at me and through tears said, "I wish I could walk, momma". It hit me like a ton of bricks. I was hunched over helping pull his walker along when he said it, and I dropped to my knees in front of him when he said that. I said, "you are walking baby". And his response hurt worse. He said "No, its hard for me. I wish I could walk like Adalyn and Shepard (his cousins) without the walker. I wish God made me to walk like they walk". Crushed.

In the past when Steele has made comments about walking or not walking I have been able to swallow the huge lump in my throat and encourage him and talk to him without tears. The tears always come later. But today hurt. I cried as I told him I was sorry. I told him that I don't know why I was made the way I was made, or why he was made the way he was made. But I told him that I was sure of one thing. God has plans for his life, and they are plans for GOOD. God loves him and has amazing things in store for him.

So why write about this so early this morning? Well, as I have been scrolling through facebook lately I have seen so many posts like "Got the job. God is good", or "so and so is feeling much better. God is good", and even "we were able to pay such and such bill. God is good." Please don't get me wrong or misunderstand me. We have said and posted similar things-ALOT. But God has been working on my heart lately to realize that He is ALWAYS good. So this morning, He has given me an opportunity. Steele is not completely healed from SMA- God is good. I don't know what to say in those moments- God is good. Steele is hurting, and therefore so am I, because he was made and created with different abilities- God is still good.

We have an amazing singer at our church and one of my favorite songs she sings is called When I Don't Know What To Do. I just keep hearing her voice sing that song over and over in my head this morning. Part of the song says, "When I don't know what to do, I'll lift my hands. When I don't know what to say, I'll speak your praise. When I don't know where to go, I'll run to your throne. When I don't know what to think, I'll stand on your truth, when I don't know what to do." That pretty much sums up where I am at this moment. I don't know what to do, so I will praise Him and remember He is STILL good.

Thank you all for reading and supporting us. I could really use your prayers, and I know Steele could too.

God is good.

Wednesday, December 30, 2015

A Brother To Be....

If you're reading this you probably know by now that we are expecting a baby boy in May 2016. We learned this morning that this baby is a carrier of SMA, but IS NOT affected with SMA. We wanted to fill you in on our journey to this point.

When Steele was diagnosed with SMA in November 2013 we were referred to a genetics counselor where we learned that most likely Beau and I were carriers of SMA, and that is how Steele came to have SMA. (Since that time this has been confirmed-Beau and I are, in fact, carriers) We were informed that because of our genetic make-ups that should we have more children, each pregnancy would have a 25% chance to pass SMA. At first this news terrified me. I was literally so scared that I even thought about some sort of permanent birth control to my body. I was in panic mode, and just hated the thought that my sweet boy had this awful diagnosis, and I definitely didn't want to think about future children fighting this too. I remember laying in bed one night and asking Beau, through tears, to pray for our family. I felt so lost and hurt by our situation. I needed wisdom and peace with where God was leading us. So we prayed and waited.

Fast forward to August 2015 and I just had "that feeling" like I needed to take a pregnancy test. Everything in my body was just different. It was positive. I don't remember which emotion came first, fear or excitement, but I know which I allowed to take over-FEAR. I was terrified. I prayed and prayed that God would give me peace and that I would be ok with whatever happened, SMA or not. I have an amazing support group in my family, friends, and a group of my "sisters" at church. I would love to tell you that I ran to them immediately to tell them the news. I didn't. I let myself become paralyzed with fear. I cried. I panicked. I drove poor Beau crazy. You would have to know Beau. He is much the opposite of me when it comes to worry. He has a gift of trust in God no matter his situation. I admire that so much about him.

It was amazing what happened when I finally did begin to tell some of my friends and family the news. They spoke encouraging and uplifting words to me. They spoke life over me and my family. And from that moment on the fear has gone away and this amazing peace just overcame me. I regret that I waited to tell others, but in a way I am thankful for the lesson. Don't let the enemy defeat you by staying in the dark with him. He would have loved for me to stay in that dark, secretive place where he could lie to me and beat me down. I am so thankful for the wonderful people that God has placed in my life.

In early December I had an amniocentesis done to determine whether or not this baby would be affected. I am thankful for the gift of life. Beau and I decided a long time ago that God was in charge and that we would go where he called us, even when it got hard. We are so grateful for this gift. We know that adding a member to a family will have its challenges, but are thankful. Steele will forever have a brother by his side.

Which brings us to the name of this baby... I believe whole heartedly that God placed the name Steele on my heart long before I ever even imagined myself with children. When we learned we were pregnant I began to pray that God would also name this baby. A few months ago Steele's bible verse in church for the month was Deuteronomy 31:6- Be strong and courageous. Do not be afraid. For the Lord your God goes with you. It has been his favorite verse ever since, and he is happy to repeat it over and over and over again. As I have been praying about naming this baby God has delivered a message to me. I wake up at night with this word in my head. I dream about it. So, I asked Beau what he thought- and he didn't like it at all. So I kept praying. And then a couple weeks ago I asked Beau one more time. I said the name out loud, and with tears in his eyes Beau told me that was it. That was the name of this baby. So, we are happy to announce that our baby boy will be called


God is showing me, through my children, that I DO NOT have to live in fear. HE IS AWLAYS WITH ME.

Be STRONG and COURAGEOUS. Do not be afraid. For the Lord your God goes with you. Deuteronomy 31:6

I thank God that Steele and Brave will call me mommy.

Monday, July 20, 2015

Exciting News

WOW! We have had a crazy past 24 hours. I am so tired, but too excited to not share this news. Let me fill you in...

We left yesterday (Sunday) after church to go to Dallas for a routine neurology check up the following morning (Monday). Since Steele's diagnosis, we have gone every six months to this particular doctor for routine check-ups and exams. The appointment we had today was scheduled a little over six months ago.

About a year ago, give or take, we found out that a clinical trial would be opening up sometime this year in an effort to develop a treatment for SMA. Now that doesn't mean that the trial just started. In fact, this particular trial has been through a "pipeline". Basically, in my own simple terms, in order for any drug to be approved by the FDA it has to travel through this pipeline. It must be developed and put through pretty intense testing in order to even make it to human trials. They told us at the conference last year that for about every 10,000 drug ideas ONE makes it into the first step of the pipeline. Once they get to that point, about 10% of those make it through. Its a tough system, but we are thankful it is because that's how we make sure the drug is safe and effective. So, we heard that a trial would be opening up and it seemed as if Steele just MIGHT be able to be included. The study is to include children with his "type" of SMA and he fit in the age window.

When we heard that Dallas was a possible site for the trial we got very excited and immediately started praying.We went into our neurology check up in January hoping to hear about the trial criteria, and if we might be included. But it wasn't the right time. Dallas wasn't quite ready to start screening possible participants. So we waited. And waited. And waited. I can't tell you that I haven't been impatient at times. And then other times I have been optimistic. And still others I have had the feeling of just totally putting it out of my mind because I didn't know if that day would ever come.

Let me get sort of off topic for a bit.. I promise I have a point!!

Not quite two months ago Steele had surgery on his tonsils. The surgery went well and we are so thankful we did it. What you don't know is that only days before Steele's surgery we were faced with an extremely difficult decision. We were informed that if Steele had surgery, he would not be eligible for screening for the trial for two months. I went into panic mode. Why? Well my mind thought, "What if we have this surgery and then they finally open the site and we aren't able to participate?! What if we miss our shot?" I was shaken. I felt like I had to make a huge decision that could completely affect the rest of Steele's life- no matter what we chose. So, we prayed. And sought out wise counsel. And prayed some more. As you know we decided to go ahead with the surgery. This meant that until August 2nd, Steele would not be eligible for screening. It was a risk, but we took it.

And then today happened. At our appointment today we found out that the Dallas site is officially open for the clinical trial we have been praying about. Then we found out that Steele's name is on the list, and they are hoping to get us in for an appointment.....get this.....wait for it.....THE.FIRST.WEEK.IN.AUGUST. WOW!!

What this means: Steele will be screened to determine whether or not he is eligible to be a participant in this study. He will have to go through a "gauntlet" of tests. His participation in this trial will be a direct result of how the researchers determine he does on those tests and if he meets all of the inclusion criteria.

What this does not mean: Participation in the study does not guarantee results- positive or negative. It actually doesn't even guarantee he will get the drug. He has a 1/3 chance of getting the Sham procedure which is no drug at all. It doesn't mean that this drug will definitely be approved by the FDA. It is not considered a "treatment" for SMA. It is a trial- they are exploring the effects of this drug in hopes to eventually have some sort of treatment one day.

You may totally agree with this research. You may totally disagree. Either way is ok with us. In fact, we aren't even totally sure we totally agree OR disagree! That is ok. Our motivation for participating in this study is to further the research and hopefully advancement in medicine for people with SMA. If they can develop or decide against a treatment for SMA based on these trials, and we can help at all in that process we are all for it. I pray there is a CURE for SMA one day, and I pray that we can help each other to get there.

No matter what happens from this point forward we know that God is sovereign, and has a plan for our lives, and we are so thankful.

Romans 8:28~ And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

Tuesday, July 7, 2015

Cure SMA Conference - Day 3

Day 3

Our third day at the conference was similar to day 2 in that we got to choose between several workshops to attend. We had three different workshop times that day. Beau and I split up in order to gain as much information from as many different workshops as possible. I attended a nutrition course for oral feeders, a yoga therapy class, and a physical therapy class while Beau went to a breathing class, an orthopedic class, and toy adaptation. Beau actually stayed in the "toy adaptation" class for over an hour past the time of the workshop to help other families put their toy together. I was a proud wife that day...he was definitely using his gifts. That's conference for you though, we all come together to help one another. To join together as a family and work toward a common goal. That is the mindset of the Cure SMA conference.

After the workshops were completed we had the opportunity to sit in a "Researcher Q & A". This is where the researchers come sit on a panel and explain what their research is focused on, where they are currently in their research, and then they allowed the families to ask them questions. This was very interesting to me because I learned that we are closer now than we have ever been to a treatment or maybe even a cure for this disease! What an amazing day that will be!!

The day finished off with a PJ party and movie night. We were invited to wear comfy pj's and grab some pillows, blankets, and snacks and watch a movie (this year it was Bug's Life). This is just more time to sort of "hang out" with the other families. Steele enjoys any activity that includes popcorn, so he was completely content.

Overall, the conference was better than great. I know I have repeated that over and over again, but we live with SMA everyday. SMA is not great everyday, in fact, it really sucks a lot of the time. It is so hard as parents to watch your child struggle. Don't get me wrong, Steele is joyful most of the time and that really helps. It just doesn't seem fair that when he falls he can't always get back up. Its not fair that it is so hard to feed himself with eating utensils- so hard in fact that at almost 3 years old I'm still feeding him 95% of the time. I hate that nagging voice in my head that worries about what Steele's future will look like- what will he be able to do? What won't he be able to do? Will he get scoliosis? Will he need surgery? Will he always be able to eat by mouth? Will SMA take him from me? The fears could go on and on. So, when we get to go enjoy some aspect of SMA, we do it wholeheartedly. In most cases, you don't get to choose your family. That's how it is with our SMA family...its not a family we chose but chose us. I am proud of my son everyday for how he battles, how he has chosen to go through this life.... JOYFULLY. The Lord is using him to minister to me. We can't live in fear everyday, we weren't created to. We will celebrate each day we are gifted together.

When the conference was done we decided to extend our stay and take a couple days to relax and unwind our minds after all that had gone on that weekend. We had such a great time, but I couldn't help but feel like something was a little "off". For whatever reason I just didn't have the same feeling when we walked into and through our beautiful hotel. Then, on the side of one of the buildings downtown, I saw this quote by Walt Disney- "You can design and create, and build the most wonderful place in the world. But it takes people to make the dream a reality". And it hit me. That's what was off. When the families left the conference the feeling of the conference left too. We were right back to our normal which is to not be normal- if that makes sense. Needless to say we can not wait for next year's conference.

Giving Thanks

It wouldn't be right if I didn't stop and thank my dad, who generously provided this trip for our family. Our financial situation can get pretty sticky sometimes with all of the medical bills and necessities we pay for on a regular basis. So without his help, we wouldn't have been able to go on this trip and have these experiences. Thank You Dad!! We love you.

And once again I would like to thank you- whoever you are reading this and for whatever reason it is you read- we are thankful. It is our prayer that this blog would not only educate others about SMA, but also to encourage others in their journey. I pray that our life and testimony would encourage others to keep going, keep fighting, to love the Lord with all their hearts, and to do all things with JOY and THANKS :)  Always be full of joy in the Lord. I say it again-rejoice! Philippians 4:4

God Bless!!!

More Pictures

PJ party and movie night

Steele making friends at the conference


Riding Roller Coasters at Worlds of Fun Park

Union Station

Dave and Buster's Arcade Fun!

Kansas City Zoo

Snacking while riding the train at the zoo




Monday, June 29, 2015

Cure SMA Conference - Day 2

Day 2

We started our first full day of the conference bright and early. For those that don't know, Steele's morning routine is anything but quick and our first session started at 9. Cure SMA does a great job with the sessions they offer. Actually, they do a great job with every aspect of the conference, but I really have to brag on their children's room. This is the room that the kids get to go hang out in while the parents attend sessions. This room is full of volunteers to watch the kids, every toy you can imagine, games, movies, video games...its wonderful. So wonderful, in fact, that Steele did not shed a single tear when I left! I really didn't know how he would handle it being that he was in a brand new place with brand new people. I shouldn't have been surprised that he was so excited to go play, but I was.

We knew Steele was in good hands and we were excited to attend the conference sessions. A quick bit about SMA- According to CureSMA.com,"There are four primary types of SMA:  Type I, II, III, and IV. The "type" depends on the age of onset and the highest physical milestone achieved." Type I is the most severe, then type II, and so on. Steele was diagnosed with SMA type II.

The conference has "general sessions" for everyone to meet together and then they break out into "workshops" that you can choose between depending on your needs or the information you are seeking. Our first workshop was Type II Talk It Out. I love this workshop. This year, two young women with SMA type II and their moms were the "speakers". I put that in quotes because its basically a Q & A session. They give very candid and honest answers and I always love hearing about SMA from the perspective of someone who is living every day with it. I also love hearing from the moms who have done this for far longer than I have. Its definitely encouraging.

 Much like last year, Beau and I went into this conference with a few goals we hoped to achieve. One of those goals was to get as much information as we could about a power chair. As you know, Steele has had his manual chair for about a year and a half now and although he still uses it we have come to a place where we need power. He fatigues if he has to push himself for too long, and if he isn't on a smooth surface he isn't able to push far-if at all. Any situation where Steele has to go "off road" like at a park or something similar, he loses his independence.  Anyway, I sat in that session and listened to several other parent and family questions before I gained the courage to ask the girls what they preferred in a power chair (public speaking isn't really my thing). And wow! I got the best answer and advice!! I was feeling excited when we left the session and ready to dig deeper into getting a power chair when we got home from the conference. More on the power chair in a moment...

The other session I attended that day was about Standing, Walking, and Mobility. Basically we learned about bracing options (which thankfully Steele already has), how much and how long he should he stand if he is able (again, he is right on track with this!), and different equipment options that can help. More information on power chairs was also provided in this workshop! Last year at the conference I remember feeling like we had a laundry list of things we needed to do when we left conference- getting our hands on medical machines, equipment, etc. and this year I felt like we were on track with so much of what we were doing! And for that I am grateful to Cure SMA and the conferences they put on, the SMA support groups we are apart of on facebook, and our PT and ATP!!

So the sessions were over and we had some free time before the research poster session (the researchers come and explain their current projects-very cool!) and the dance party. We picked Steele up and went to look at the power chairs that a few of the vendors had with them. Our ATP came with us to help us and we talked to the reps. Here is where things get interesting. The rep there let Steele take a seat in the power chair to test it out (see Steele's Facebook page for the video). He did a fantastic job!! He knew how to push the joystick to go where he wanted to go, turn, and even back up. The rep there then suggested "Why don't you just take the chair for the night and return it in the morning?" I think my response was, "What, are you serious?" Having a two year old in a power chair Just. Got. Real. When he was "testing out" the power chair he was in a big open room! Now he was going to take this 300 pound machine it out into the masses of people at the conference?! To the dance party?! I would be lying to you if I said I wasn't full of anxiety.

It was time for us to eat dinner before the research poster session and dance party. Getting into the elevator I think Steele ran over Beau's toe and his PT's entire foot! I have to hand it to him, he did great...for a beginner! When we went to dinner it was the first time that Steele could elevate his chair and sit at the same height as everyone else at the table without a high chair. Later, he took the chair to wash his hands. It was the first time I had both of my hands free to help him get the soap and towels rather than hang on to him with one of my arms while balancing him on one of my legs. He was independently (and quickly) mobile! It was great to see his face while he operated that power chair. A moment I won't soon forget.

Our last stop of the day was the dance party. For those that know Steele, need I say more? That kid had a blast and wore myself and his daddy out! He wanted to party all night!  What a fun, and memorable second day we had. We gained very useful information, met some more amazing "family", and witnessed another one of Steele's "firsts". We were filled with JOY.  

A few pictures from day 2
Steele playing at the Dinosaur table in the children's room

Testing out the power chair in the BIG, OPEN room

Sitting at the dinner table in the power chair

Dance Party!!!!

Dancing with Daddy

Cure SMA photo booth

Saturday, June 27, 2015

Cure SMA Conference 2015 - Day 1

Wow! I just had to start this post with that word. "WOW" pretty much describes our week in Kansas City, Missouri perfectly. We had an amazing time with our SMA family. I think it would be best to break up our posts into days 1, 2, and 3 of the conference just to limit the length of each post. There is so much to say about each day. So let's get started!

Day 1
We decided that we would drive to the conference this year, so after a 9 hour trek we were pretty excited to pull into the hotel. When we pulled up we noticed that almost the entire line of vehicles were wheelchair accessible. If there was any doubt that we were in the right place that pretty much eliminated it. The hotel was absolutely beautiful. You walk in and hear the sound of falling water. On the second level of the lobby area was a beautiful waterfall. It didn't take Steele long to spot it, and he wanted to make a beeline right to it. When we went to check in we were informed that due to the heavy traffic of people leaving from the night before and all of the people coming in for the conference our room was not quite ready. At the time it seemed a little frustrating because we happened to arrive right smack in the middle of Steele's nap time and I knew he needed to get his rest in order to enjoy the rest of the evenings activities. Looking back, however, I am thankful for that delay because it led to more networking with other families that were in the hotel for the same reason we were. Steele had a blast meeting other kids in chairs and showing off his fancy tricks (which is mostly spinning in a circle). I will talk more about this later, but the feeling in the room was just positive and upbeat. I came to find out later that it had nothing to do with the hotel, and everything to do with the people that traveled far and wide to be there.

So a couple hours later we got a room and let Steele rest for his big "meet and greet" night. When he woke up we got him ready and went to Fritz's for dinner. Fritz's is a really cute train restaurant. You order your food from a phone at your table and a train that runs on a track around the room delivers your food. For those that don't know a few of Steele's favorite things are Buzz Lightyear, dinosaurs, and trains. He was elated to be eating dinner there.

At the restaurant we met up with Steele's physical therapist and his ATP (assistive technology provider) who also attended the conference. Folks I could go on and on about this. The fact that they took time out of their schedules, and spent their own money to attend this conference so that they could learn more about SMA in order to serve not only Steele but other clients they may currently have or encounter in their future is INCREDIBLE. You don't run across people like that everyday. They always go above and beyond.. and I don't believe that is special treatment we are getting from them.. its for all of their clients. Again, INCREDIBLE. We are so grateful for them.

So with full tummies and excited mindsets we went to the meet and greet and family fun fest. In the middle of the room a track was outlined on the floor. That is where they held the wheel chair race. This is something they do every year. Its where the doctors and researchers that are working hard to find a cure meet up with the people affected with SMA and race. I love this because the researchers get to meet and see the people they are working to help. To me, it makes it more personal. Its not just an experiment with mice in a lab. They are working to change the lives of so many that are affected with this disease that just robs and takes. I appreciate the work they are doing. I pray that their hard work pays off in the form of a treatment or cure soon. As of now, there are no treatments or cures for SMA. This year alone, over 70 people have lost their lives to SMA. Please join me in praying over the researchers who are working tirelessly to find that treatment or cure. And also pray for the families that have lost a loved one already. Its hard. Really hard. But when you can get together with others that are fighting the same fight and link arms and support one another it gives you a renewed sense of strength and hope. Its refreshing. Its motivating.

Around the rest of the room are carnival-type games. Volunteers are at each station and the kids can go play a game and win a prize. Many of the games involve throwing an item at another item-another thing that's high up there on Steele's priority list. So Steele made his rounds at the game stations and we had time to network with other families. Some were families we met at last years conference. Some were people we had only "met" via facebook support groups, but they all felt like family. It was a great start to our second SMA conference.

Here are a few pictures from day one!

Yay!! We made it!

Waterfall in hotel

Waiting for the train to pass at Fritz's Restaurant

Family Fun Fest

Wednesday, June 17, 2015

Post Surgery Update

Well, it has been just over two weeks since Steele's surgery and we are happy to report that he is recovering very quickly!! We would definitely call the surgery a success in that there were no complications, Steele hasn't lost much strength during his time "off" from therapy, and he is eating normally!! We are so thankful to have this major step behind us especially because we are leaving for the annual SMA conference TODAY!!!

This year the conference will be in Kansas City, Missouri. It is hard to believe that it has already been a year since the last SMA conference. As we have been preparing to leave I can't help but to compare my emotions this year to the emotions I was feeling last year at this very time. I have mentioned this before, but last year about this time I was second guessing the trip. I was anxious, scared, sad, and a host of other emotions-all which seemed to hit me at the same time. This year I am anxious but for a completely different reason. I can't wait to go see the people that have become our SMA family. I can't wait to go be with others that just "get" us because they are going through such similar situations. I am excited to laugh together, to cry together, and to learn together.

Be sure to like Steele's Facebook page as we will post pictures and updates throughout the conference. We are so excited to share this experience with you.

As always thank you for your prayers and support!!