This week has been potentially the hardest weeks of our lives. As our faithful blog readers know, we did a TON of testing on Evan while we were in Florida and we got a call from the doctor this last monday, December 15. She said that the last blood test that we had done confirmed that our angel has spinal muscular atrophy (SMA).
SMA has many different types and Evan is type 2. This genetic disease has a huge range of effects that it can have on a person, but it does mean that he will be wheel chair bound for the rest of his life. Monday and Tuesday were hell, and everyday since has been better with some ups and downs. We are taking it all in one day at a time.
We have been so blessed with peoples prayers and good deeds this week. The first two days Justin was out of town and my mother in law drove into town to be with me that first night. My beautiful friend Kathy came the next day and spent the whole day sitting next to me on the couch while I fell apart. There have been so many people in our ward that have brought over dinner so I didn't have to think about what we were going to eat. There have been people who have brought over chocolate and other treats for when I need to "self medicate". There have been people who just stop by to give me a hug and a shoulder to cry on, and even people who have called on the phone just to make sure we are doing ok. My mom is going to come and be with me in January and I am drawing a lot of strength from that. We cannot express just how much all of the love that has been expressed to us over the past week has lifted us up. Thank you so much!
We have learned of a second cousin in Utah who has had three children with SMA, and today we are going to meet another family in Calgary that have two children with SMA, and tuesday is our neurologist appointment. We are doing everything that we can to learn about what it means to be the parents of a child with this specific dissability.
We know we will be ok, and are trying to be strong in the meantime. We love Evan with all of our hearts and more. We will do anything to make sure he is always happy.
Click here to read more about SMA
23 comments:
I am so GLAD to hear of your wonderful support system in your ward. I was praying about that.
I am deeply sorry to hear that it was not the news that you were hoping for after the testing.
HE is a wonderful little boy with a real purpose in his life. He will bless your lives more than you will ever know, as I am sure you know this. HE is SO blessed to have you as his parents.
Continue to love each other. Take one day at a time. Draw strength from the Lord. And your family and friends. And all will be alright. You are an amazing and loving person. Your family truly is blessed.
"The Lord only gives us what HE knows we can handle."
Kira and Justin and Evan, my heart goes out to you. You all are in our thoughts and prayers. We wish you strength, happiness, and love this holiday season.
Kira, you sound like a pillar of strength. I'm so sorry for you three, but I know Heavenly Father will bless you and make it not be the nightmare I imagine, as only He can. I'm here for you, too, if you can use me:)
I'm so sorry that Evan was diagnosed with SMA. My name is MJ Purk. My real name is Margaret. I am 20 years old and am a junior in college. I have SMA type 1+, meaning I don't fit in any category. I got your blog address from a google alert for SMA.
I have an organization that sends blankets to kids with SMA and would love to send one to Evan. My organization is called B4SMA. My caregiver and several others make the blankets. If you would like more information, check out http://www.our-sma-angels.com/b4sma/
Should you decide that you would like to receive a blanket, please e-mail me at b4sma_kids@yahoo.com with your post address. All we ask in return is a picture of Evan with his blanket covering him.
Also, if I can help answer any questions you may have regarding SMA, please don't hesitate to email me at any time. I am not afraid to answer any questions you might have. Big hugs to you and your family.
I'll keep this short because you already know how much you all mean to me :) I am here for you forever. To cry on, laugh with or do your laundry if you just can't manage that day :) I love you!
Kira, I read about the group that MJ mentions in her post. It was one of the links I didn't send you yet - I'm trying to not overwhelm you with things I've come across and just give you things here and there. I think it's wonderful that she contacted you! Take advantage of these contacts and offers of help, listening etc. from dear friends & those you will meet (like MJ) through this experience. We love you all. You know we are here for you in any way we can be. Looking forward to coming out and helping in any way that I can. :D
Palmers, Matt and I have shed many tears for you guys this past week. Matt couldn't stop crying for about two days. We love you three with all our hearts and will continue praying for you. One thing Matt and I know for sure is that if anyone can give Evan the most awesome life ever with SMA it is you guys. The two of you have so much love in your hearts and are such up beat and positive people. You are and will continue to be awesome. We LOVE you!!
Oh, and I forgot to say that I know it wasn't easy for you to write this post but you did a beautiful job! Love, Mum xxoo
Palmer family,
Our hearts go out to you at this time of difficult trials. Evan is one of the most sweetest child I know and everyone in Gainesville
3rd Ward knows how much love you give to him every day. My prayers will be with you. Please count on us for anything we can do for you.
Much love,
Claudia & Jon
I want you all to know I'm thinking about you and will pray for you! I will really miss you when the ward splits! You are a wonderful family and I'm glad to know you!
Oh Kira! I'm so sorry to hear about Evan and I can't even imagine how hard this news is for you but I know that even with SMA Evan will lead a wonderful life and that it will be filled with so much love! If you ever need to talk or be distracted I am here 24/7!
I love Lynn's last line in her comment. "The Lord only gives us what he knows we can handle." I was talking to my sister-in-law and she said the same thing. Evan is so lucky to have you and Justin for parents.
I love you and I will be praying for you and Justin and beautiful Evan.
I am sooo glad that your mom is coming up soon! I know i draw so much strenght from my mother, just being with her makes me feel better! We will be praying for you guys to give you strength and peace of mind!! Especially in this holdiay season!!
I hope you're able to enjoy the holidays at least in part. We love you, and know that you're always welcome to stay with us when you're visiting Utah (or wherever we are).
Keeping you in our prayers. He's a lucky little man to have you both as his parents. He's very loved.
We love your family so much, and you are in our prayers. We hope you'll find comfort and peace as you learn more about Evan's new needs. You and Justin are such wonderful, loving parents. Evan couldn't have more perfect parents.
I love you Kira. Evan is sure lucky to have you and Justin for his parents. We will all give him the best possible.
Kira and Justin I have been wanting to say something to you guys everything that has been said is the thoughts that I have had to say to you guys so I guess I will just say "dido" to everything said. I am thinking of you guys all the time and have told my Mom and Dad that when we go up that way that we ARE going to head up there to Calgary and see you. I miss you so much and just want to give you a big hug.
Love you guys
Kristin
Justin & Kira,
I am so sorry to hear about little Evan. This news breaks my heart. You three are amazing people who continually inspire me. You are in our prayers.
Teresa
What a blessing it is to have the perspective that we have in life. You are a great example to me. He couldn't have picked two better people to be his parents!
I love you guys and little Evan. I'm just sick about the news. I know that he was sent to your home for a reason. Stay close to Cherylin (the 2nd cousin) and her family. She is an inspiration and knows so much about SMA. Keep us all posted.
Justin and Kira,
I don't know what to say except we love you guys. You are the most deserving people of love and happiness in your life. I know you have that with Evan and I could not be happier for you. With this next challenge in your life, once again you give others strength through your faith. You and your family are in our prayers. I am thankful that you have wonderful people in your life to help you with all that you need. Please know that we miss you and we think about you often.
Love, Natalie and Kent Copeland
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