Monday, September 14, 2009

Comfort

(This picture was taken in our front yard on a love sac the kids had just received from Grandpa and Grandma. They rolled into the yard before it ever made it into the house. It was the jumping bag /entertainment for the day!)




I want to thank each of you who have sent comments, e-mails or texts, prayed, fasted, brought by cookies, flowers and many other ways of showing your love and concern to our family. Through all of this I have been able to find the necessary comfort and strength to continue to go on with life, to take care of my family, and to find joy in each day I have with Mason. Though even with this comfort, I'm not trying to fool anyone. I still cry each day, several times a day, as I think about the day of Mason's Heart Cath, Dr. Everett coming out of the Cath Lab with red teary eyes saying she needed to talk to me, and the devastating news about Mason's failing heart unable to receive a transplant. This broke my heart, shattered my hopes, and left me numbering the weeks and days I have to spend with my baby. But I can't even imagine going through this alone, without the comfort of wonderful family and friends, a loving Father in Heaven, the Gospel of Jesus Christ, and a supportive "heart" community.



After fasting and praying along with everyone who joined us (and still continue to...thank you!!) I feel comforted with our decision to send Mason's medical information on to a few children's hospitals who specialize in heart-lung disease for their opinions and advice. As a mother I need to know I did everything possible to give my baby a chance at life. Maybe, there is another miracle out their for our Mason. Or, maybe I just need more information to know and accept that we've done all we could to optimize our baby's quality of life. Although I feel like my hopes were shattered and I am trying not to get my hopes up once again as we seek more opinions, hope and faith are all I have to hold onto now. As I go forward with this faith and hope I am comforted knowing there are so many praying for Miracle Mason and our family.



The good news is Mason is doing really well. He has seemed much stronger the last two weeks.Watching him scoot around the house and continue to get into all the cabinets and drawers with a big smile on his face, it is hard to believe how truly sick his little heart and left lung really are! He is trying to crawl up stairs and pull himself to a stand. He needs a bit of help, but will now put weight on his feet and actually enjoys it. He will also scoot on his bum all the way down the stairs. Not just a couple of steps, but 17 steps from our upstairs to our main floor, and then again down another 15 steps to the basement. He laughs with each step! It is sooo cute! I need to get in on video. These little things, which are actually huge things for sweet Mason, give me comfort too!



Thank you again and again for all your love and support! I will continue to update as needed. Dr. Everett has been out of town, but we will begin this week to send Mason's information on to other hospitals.

14 comments:

The Simmons Family said...

Summer.. I think about your family often, watch for updates, and PRAY! I love that Mason is scooting along and trying to pull up, just like Owen. :)

I called Stanford to have them look back and Owen's caths and they have never checked his pressures for transplant so now I'm a bit nervous. We talked about Mason because my heart was sad.. they listened to me sob.

I think that getting more opinions is a great idea. Even if it's just for reassurance.

We continue to pray for Mason and your family! Tomorrow is Owen's Gtube surgery and I hope it goes as smooth as Mr Mason's did!

Can't wait to hear what the other hospitals have to say.

Jamie said...

We continue to pray for your family, Summer. I think you are making a great decision to get other opinions. And no one can blame you for crying each day. You're a real inspiration to me..thanks!

Mindi D said...

My heart just hurts for you. I am so sorry. The most common thing i hear from people is 'she doesn't look like she has anything wrong with her' I think that is the hardest thing about these heart babies, is most of them look and act totally normal. It is hard to comprehend that anything is wrong. I can't even imagine going through what you are dealing with. I am soo sorry and we will continue to pray for Mason! Miracles do happen so don't give up hope! I think i asked already but where are you from? We live in Ogden.
Mindi
Libbi's mom

Kyle and Alli said...

Oh Summer,

I am so glad to see how much the word "comfort" is emphasized for this is the very thing that we have been praying would be with you and Marc right now. What a great thing to have one on one time with him thanks to school starting again. You will continue to treasure those moments . Good luck in hearing other opinions... it has got to be so confusing and overwhelming to get so many different ideas and opinions. We will continue to pray that Mason gets to keep feeling well and have energy to make mischief at home!

Ingram Family said...

Know that we are continually praying for you to feel comforted during this uncertain time. You are a tremendous example of being able to find joy in the journey - even when the journey seems to much to bear.

Cristy said...

Dear Summer, You don't know me, but I am Bridger Smith's Nana. I just want you to know that I am glad that you have decided to check out other options. If there is one thing I learned from our sweet Bridger, it was this...as long as he was willing to keep fighting to be here, we needed to do all we could to help him acheive that. Danny and Staci never gave up on their sweet boy. And although our part as extended family and friends was minimal,(endless prayers, faith, and support,) I will be eternally grateful for every moment we had with our perfect angel boy. These heart babies are nothing short of a miracle. Their spirits are amazing! We continue to pray for you, and all of our other "heart" babies. Good luck as you continue with Miracle Mason's journey.
Cristy Smith

cici said...

Dear Summer,
I am so glad you are getting other opinions. There are so many new treatments that become available and as he grows he could fool all the Doctors and improve dramatically.
I will put Mason's name in our prayer
chapel and many angels will be praying.
Stay strong for your little guy and NEVER give up hope. His name is not Miracle Mason for nothing ;)
Give him a big hug from me!

Pete, Alison and Charlie said...

Thinking of you all, and keeping you in our prayers.
With love from one HLHS mum to another X

The INCREDIBLE Pettit's said...

Summer,
I'm so sorry this is my first comment, I have been a little removed from the blogging world. My Mom told me of the news a few days ago and I've read your posts, but have been unable to comment as Teagan likes to help me on my computer, all excuses aside I want you to know that you and your family have been on my mind and in my prayers. I look to you as an example of a wonderful mother, especially Heart mother. I pray for Mason and I'm glad to hear you have a plan and feel comfort at this trying time. I think you are doing the right thing...I get asked all the time why I do the things I do to keep Teagan well and my responce is always the same, I have to know I did everything I could when all is said and done and then the rest is in our loving Heavenly Father's hands. I found a wonderful quote the other day and as a Heart family we try to live by it, "Life is not a matter of counting the years...it is a matter of making the years count." I will continue to pray for another MIRACLE for your little Mason, until then God Bless.
HEART HUGS

Katie said...

I'm so sorry. Praying for Mason, your family and for you to continue feeling that comfort that only Heavenly Father can provide. Mason is a miracle and may many more unfold for him!!!
Love,
Katie (Maddie's mom, HRHS)

Rachelle said...

Summer-
I have a little card I want to send you. I am not sure I have the correct address for you if you can email your address I will send it to you. elle007@cox.net

I am praying for you and your family and Mason. You are amazing and a special mom :)

♥ Michele ♥ said...

Summer,

I don't even know what to say! I am glad you are able to feel some comfort at this time. I just wanted you to know that I think of you all the time and want to come see you. I will continue to pray for you guys, hang in there!

Michele

Paul Cardall said...

Although we do not know each other please accept our deepest love and prayers on behalf of Mason. His spirit is so strong and pure.

We love and adore your family.

Our Heavenly Father wraps His arms around His children.

Please please let me know if there is anything I can do for you?

Paul Cardall

Staci said...

You are so strong, I admire you for looking at all possible options for your son. No one can imagine the tremendous struggle that you have on your hands. Enjoy every moment you have with your beautiful son, he is truly a gift. While Dr. Everett is out, others may be able to help you. Dr. Minnick, Dr. Cowley, Dr. Chan, Dr. Day and Dr. Puchalski all helped in coordinating our application for heart-lung to other hospitals. They could be a great asset to you. I am glad Mason is doing well.

Staci (Bridger's mom)