No matter how hard things may seem these days his smile helps me through. Listening to him try to talk and sound like he's speaking chinese makes me laugh and feel grateful. I have the sweetest little boy.

When I take the kids to the park I start thinking more about what Luke should be doing at his age. Walking around and climbing on stuff. Chasing his sister around. Going down slides. I start feeling down.  I know it will get harder as he gets older and knows more. But for now he loves watching his sister and he loves being pushed in his stroller. I'm trying to stay in the moment. Too much stuff I could worry about in the future. So Livi took Luke down a little slide. We blew bubbles. Luke was happy. He watched and laughed at his sister.  He loves being outside. So glad fall is coming so we can get out more!

At the park enjoying the breeze

Laughing at sis

Livi taking Luke down the slide

Love this girl. 

Hanging out with our friend Judah

Livi's first manicure with her friend Lexi

Its easy for me to start feeling down and when things seem unfair and hard. My heart hurts that Luke can't do more. But I'm trying to look back through my life and remember all that God has brought me through and done for me. Nothing is too hard for Him. He hasn't ever left me. I can trust Him to bring me through whatever is ahead. 

Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise Him, My Savior and my God. Psalm 42:5

SMA Candle Lighting

Tonight at sunset all SMA families and friends will be lighting a candle to remember the SMA angels that are no longer with us and all SMA warriors that are battling SMA right now. Say a prayer and light a candle for us tonight that a cure is found. Pray for the families who have lost their babies and for those of us that are daily living with the challenges of SMA.

We received Luke's fancy xpanda chair this week. Its taken months to be approved through insurance so we are really excited to finally have it. The xpanda is a chair we will use at home to keep Luke really supported since he can't sit on his own. SMA causes scoliosis so we need to be mindful of his posture most of the time. It has a hydraulic base so it can be low to the floor or up at the table. It has a big tray for toys and eating.

Livi trying to make Luke laugh

SMA Awareness

Livi took this picture of us

August is SMA awareness month. So I don't really like to talk about the genetics of SMA to people because I don't want to scare anyone. Lots of the SMA families we have met do so much to spread awareness, but I don't like to tell people they may be carriers of SMA. I'm sharing all this to make people aware and understand better what SMA is. Jeremy and I had no clue we were carriers of a faulty gene. Being a carrier doesn't affect the person. You have no way of knowing unless you are tested for it. Its just a simple blood test to find out if you are a carrier. There is no family history of SMA on either side of our families. So this is how it works. When both parents are carriers of the SMA gene then there is a 25% chance of each parent passing the SMA gene to children with each pregnancy. A SMA gene from both parents cause the child to have SMA. When both parents are carriers there is a 50% chance the child could become a carrier from one SMA gene from one parent, but be unaffected by the disease and also there is a 25% chance child will not be a carrier or get the disease. So when just one parent is a carrier their children will not get the disease, but have a 25% chance that they could become carriers. About 1 in 40 people are carriers of the SMA gene. One in 6000 babies gets SMA and its the number genetic killer of children under 2 years of age. Children with SMA are missing or have an abnormal SMN1 gene. The SMN1 gene is responsible for producing a protein that the motor neurons from the spine need to send out to the body to have normal movement. Without the protein the motor neurons die and the muscles atrophy. So those are the facts. Luke got the gene from both of us and Livi didn't. We will let Livi decide when she is older if she wants to get tested for being a carrier. There are 12 drugs in research for treatment and curing SMA. There could be a treatment in the next 5-10 years. I really don't dwell on that much because I have to focus on today and what Luke needs to make his life the best and fullest it should be. But it is exciting that they are so close to finding treatment.

Luke loves books

I know I put lots of pictures of Luke smiling and looking happy, but its not always like that. He is a really happy boy, but he gets frustrated and tired of sitting. He wants to move.  Everyday is challenging.  We are still learning about how to best take care of Luke. Questions about diet and equipment still to figure out. Sometimes I feel like I'm barely keeping it together. I have to take a deep breath and pray help me Lord. Just a short simple prayer. I ask God for help and I am believing that He will. I don't feel like I can take a step without Him.

I lift up my eyes to the hills, where does my help come from? My help comes from the Lord, the Maker of heaven and earth. Psalm 121:1-2

Strong arms!

Learning Patience

 Being a mom takes so much patience. It seems like theres always going to be something we are waiting on that we need or want for Luke. There are always phone calls to doctor offices and insurance that I need to make. It wears me down sometimes. Its kind of a battle to get what we need for Luke. We got an offer on our house this week. After two days of waiting to hear back from the buyer with our counter offer the person backed out. Not because of the offer, but because they want to rent somewhere instead of buy a house. So disappointing, but we know God has a plan. I hadn't really let myself get excited about moving until that offer because who knows how long it will take to sell. So back to being patient. God has it figured out for us, but we have to wait.  So we made a pie to cheer us up a little.

Livi making the filling for coconut cream pie. Shes been so excited to help me cook lately.

Luke trying out some pesto pizza

Luke's physical therapist brought a switch toy for him to try out. He isn't strong enough to push buttons on most toys, but the switches are easy for him to push. It was so fun to watch him react when he realized he was making the toy turn on!

Luke got to try out a power chair at physical therapy this week. Its going to take time for him to learn how it works, but once he gets the hang of it I know he will love it. We are trying to figure out which joystick will work best for him to operate the chair. Hopefully we will be able to borrow a chair soon to try out at home for a while. 

When we first suspected there was something wrong with Luke he was about 6 months old. The thought of my child in a wheelchair was the scariest thing. I just couldn't imagine that. I had to hope that he would get stronger and there would turn out to be nothing wrong. Its taken me time to deal with and process whats happening. I can't fix it. I know God can, but he hasn't yet. I have to trust His will to be done whatever that looks like. Seeing other SMA kids at the conference in their chairs was such a blessing to me. The kids helped me stop being scared. Now his powerchair is something to actually look forward to! 

Pools, Pals, and God's Provision

We have been getting in the pool lots lately. What else is there to do! When its not 100 degrees Luke loves going for long stroller rides. Its going to be a long summer without those. Coming up with stuff to do with Luke inside is tough. I tried taking Livi and Luke to the aquarium by myself and it was just too much for me without help. Livi is a good helper but she's only 4, very strong willed and needs lots of discipline. Luke needs me to do almost everything for him. Its not easy taking them places. Not much in life seems easy lately. Sometimes I dwell on that too much. I start to think when we get a bigger house or a van or Luke's powerchair things will get easier, but what about right now? This season is challenging. But I know God is really giving us blessings through it. Learning to wait. To be content. Knowing so much is out of our hands and in God's. Be still and know that I am God. When I'm rocking Luke at the end of the day I think about that scripture. It gives me alot of peace to sit and cuddle Luke and hear God reminding me to just calm down and thank him for the day even if it was a hard day. Listening to Him tell me again that he is in control. Feeling that rest and peace that only Jesus can give.
God has provided so much for us already. We have great medical equipment that is necessary for Luke. Now we have connections with other families from the conference. Two women from our church come over one day every week to watch Luke and give me a break. We have friends and family that would do anything for us. So much to be thankful for.

Hanging out with Whiskers, the sweetest cat ever

Drinking a green smoothie of kale, frozen mangoes, banana, and apple juice. 

Luke and his buddy Liam

Livi and Lexi on 4th of July

Jeremy brought me flowers after a long day. Love them!

We surprised Livi with her first bike

Part of a New Family

We just got back from a conference for families of spinal muscular atrophy. We were not looking forward to the long drive to Minneapolis and going to something we wished we weren't a part of.  Another father we met there said its the club that no one wants to be in. But we are and after being with these other amazing families our hearts were really changed and lifted. I think before I was afraid of Luke not only dying, but living also. Would he be happy living with such a severe disability? Would other kids tease him and stuff like that. I found out these SMA kids are confident and happy and full of life. Watching them drive around in their power wheelchairs just having a blast made me so excited for Luke's life. They are social and bright and love life despite being so different. We heard from lots of adults with SMA that have done so much with their lives and are glad they are the way they are. We connected with families that know exactly how we are feeling and we are so encouraged. We even met parents who had lost a child to SMA that still come to the conferences and raise money for research and encourage other families going through the same thing. We really aren't alone. We can do this. We went there with heavy hearts and feel lighter now. Hopeful. I'm so grateful to God for bringing us there. He knew we needed the support and connections we now have.  Now we just need to get Luke some wheels!

Luke swimming with Max, also type 2 sma

Luke loves the water. Its one of the best therapies for his muscles.

Livi loves playing with her Daddy. She's such a sweet sister to Luke and the best at making him laugh.