Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, August 21, 2014

It's come to this

We got a bit of news last week. The Brotizamib didn't change Alex's antibodies. While that means so many things, it mostly means that our chance of matching to a donor heart are very very slim. Our very professional but loving cardiologist explained that we should enjoy our time together. Miracles happen all the time, and if Alex is supposed to get a heart he will. We should make memories and we should find joy in each day. We shouldn't stop our lives. 
This was hard news for me. I wanted to be strong and I wanted to stay hopeful. But I am frustrated. I am sad that my boy is struggling. When we first had infertily issues, and when misscariages kept happening, I wasn't angry at anyone or anything, but I felt very out of control and vulnerable.  I just couldn't predict when it would get better or would change. I was confused about how I should act, especially in public. That all seems to be the same now. Forgive me. 
It has been a great weekend for other reasons. We always seem to be lifted, encouraged, and strengthened right when we need it. 
Friday we went up Springville canyon to the ward camp out. It was so fun to be together with our church family. The kids loved the freedom and friendship too. We let MayLee and Alex off oxygen that night. You know, fire and oxygen just don't mesh well. I should have said "everyone out of the van and roll in the dirt" because every child was covered from head to toe in filth. There were these steep hills that every kid felt the need to climb and slide down. Because of how steep they were you had to navigate the decent on your booty. My job as mom was to make sure kids didn't get flattened by cars passing on the little road, keep them from drenching themselves in the stream, make sure that they didn't throw rocks down the steep hill, and move May away from the fire because she wanted to touch the darn thing. It was heaven. It was real life fun. 

We couldn't stay over for a couple of reasons. Jeff and I were attending a temple sealing in the morning and we didn't think we could make it home in time. He also had a baptism to prepare for and attend, and we had receptions later that night. We also managed to work on the bathroom downstairs. We hope it will be finished this week. Hurray!!! 
We wanted to make sure sleeping in the tent is crossed off Alex's bucket list so Sunday night we set up the tent and all slept in it together. The kids did great except May who kept kicking me. I bailed the air mattress and slept on a sleeping bag till she did the same kicking thing with Jeff and I pulled her down with me. Stinker!!! I love sleeping out. The best part is your nose is cold but your body is warm. Plus all that fresh air. We pulled two air hoses out to the tent for Alex and May. In our situation that is killer camping at it finest. 

On Monday we had an incredible experience. Primary Children's Hospital Miracle foundation helps so many children. They do so much more than just bring financial relief to parents of patients. They bring the community into the lives of patients so that we are buoyed by those willing to help. Mountain America has an amazing golf tournament called Swing for the Kids, that they have been doing for 11 years. That means they have been helping families like ours for longer then Gator has even been alive. What an impact they have made. They asked Jeff to come and share our experience with the hospital and Alex's story. We of course would love to help in any way. When we arrived, many of the golfers were still out and so we got to ride a golf cart (which thrilled my kids to no end) to pet a golden eagle. What an amazing bird. Gator loves Wild Krats, he was asking the bird handler all kinds of intelligent questions he had learned about these eagles from the show. I was amazed by his knowledge. 
After returning to the club house each of my older kids got to go in the Mountain America money machine. Each person is zipped into the encloser. They get ten seconds to grab as much money floating in the air as they possibly can. Ry was very very serious about this. She walked away with $81.00, Gator scored $47.00, and Eden grabbed $28.00 big ones.... They were thrilled. That kind of money for these kids is like a small fortune. 
The fed us a fantastic dinner. Jeff spoke about how wonderful we have been treated, how thankful we are, and how generous those strangers who are willing to help us have been. He did an amazing job at sharing our gratitude. (Soeaking must come easy to him). 
After Jeff finished, Alex wanted to say "thank you for helping kids like me". 
I began to leak from my eyes when the whole room rose to their feet, clapping. It was just what my heart needed and those men and women in that room had no idea what we had just been delt only four days earlier. Then the amazing Sterling, CEO of Mountain America said they had a little gift for Alex. They pulled a white sheet off of an electric Yamaha quad. Alex's face was priceless, his mouth dropped open as he looked at Sterling and then at Jeff in unbelief. This boy who adores anything with a motor and who hasn't been able to ride a bike or anything really since his pick line was placed, can ride this and not get tired, or worry about his lines, and it is stable being on four wheels. His emotions took over at his complete joy and he burst into tears. Happy/excited/incredible tears. The best part was he was just happy about riding it around at Jeremy Ranch. When he found out he was taking it home he did another happy dance. MACU blew his mind. We had no idea when we were asked to help out, that we would be showered by such generosity. I am sure this is what kings and queens feel like. We simply wanted to share our gratitude. There is so much good in this world. 


sarahgurl said...

Thank you for sharing your tender feelings Brynn. You are so sweet to let us all and let us be a part of you joy and grief. And thanks for all the pictures! All kinds of love from the Armes family

Allison said...

Oh Brynn, I am shedding tears for you and your family right now... both heart ache at those stinky antibodies and tears of gratitude for wonderful people who are there at the right moment to bless your family and know of needs that most are not aware of. We will continue to pray for your family and wait for Gator's miracle!

Sarah Turley said...

Nothing like a good cry first thing in the morning. Love to you and your sweet boy and the rest of your family.

Scott and Mary said...

My heart is full of sadden for all that you have endured but so grateful you feel so much love and generosity during this difficult time. My thoughts and prayers are with you. I still miss our talks and think of you often. Thanks for sharing. Love you my friend.

Julia said...

Tears streaming down my face. So sorry about the disheartening news, but in awe about your perspective and expressed gratitude. Bless the good people in the world that bring joy to others with heartache. Praying for strength for you and Jeff, and for Alex to have the best life--that he's meant to have. Heavenly Father loves all of you, and knows what you need. Hugs and prayers. We love you!

ann said...

You will never regret a second opinion. Stanford and Boston are the two at the top of the list. Easily contacted. Your own cardio should concur with a second opinion

Melanie said...

Hugs. I have no other words.

auntiejenni said...

i have no words....just so many prayers every single day...morning and night and over every single meal and then more prayers in between. so many prayers. and not just mine, either. i have put him on every temple prayer roll in the vicinity. and all of you as well. there are so many miracles that haven't happened yet. expect them. hopefully those miracles will jive with yours. i am living proof that miracles come, even if they're not the ones we expect. i love you little brynie. love you so much.

Melissa said...

Love you guys so much!! Heart hugs!
Thanks for the update. I have been wondering and praying.

Bobbi said...

You and your family are truly amazing. Beautiful examples of Christ like love! Hugs always and forever!

Esther said...

Thanku for telling us this story, I love you and you little darlings. :-)

The Redhead said...

My heart breaks for you and the Johnson's pray for you guys too and know that miracles do happen. Thanks for your example of faith and gratitude!! Love you guys!

Melisa Warner said...

I was so touched by your blog. I am grateful that you share your story the bad and the good. It helps all of us to be more aware of how truly blessed we are and to see God's hand in our lives. It is so inspiring to hear about your experiences and the fun you find in all the little things. We love your family and just think you are an amazing example of hope.
Lots of LOVE,
The Warner Family
PS Love the picture of Ryleigh and our girls

kristen said...

You are such an amazing person. I am so privileged to know your family. Thank you for being so willing to share your experiences.

Summer Gibbs said...

Miracles do happen! My good friend was told not to expect a new heart because her antibody levels were so high and chemotherapy didn't reduce them. A month later, they were calling her to tell her they had her new heart. It's a perfect match and she has had zero rejection! I will continue praying for your family and sweet Alex!

Jen Reeves said...

We are truly so lucky to know the Homer family. You guys make us smile, laugh,cry and rejoice! Thank you for letting us be a part of your journey. We love you guys!!