Elijah in his new onesie! Thank you Auntie Tana!!!!!
Tuesday, May 12, 2015
Seven weeks ago. Our seventh child. Was seven weeks old.
He was diagnosed with retinoblastoma, a rare childhood cancer of the eye. In order to protect him, his right eye had to be removed. These are some of the lessons I have learned so far on our journey:
1. Even when I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me. (Psalms 23:4 NLT)
From the very beginning, my Father reminded me not to go where He didn't lead me. To not let worry overcome me and carry me places He didn't intend for me to go. There are a million what-if's that I am just not meant to know.
God didn't cause this or even INTEND for this. But it was lovingly sifted through His hand. He did not allow anything to come to us that He would not walk through with us. And He never, ever allows anything without bold intentions for my good and His glory.
2. ...Therefore, we who have fled to him for refuge can have great confidence as we hold to the hope that lies before us. This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary. (Hebrews 6:18-19 NLT)
It's okay to be sad. My hope is secure and it is a strong and trustworthy anchor for my soul. But I have to be careful. Self-pity, and a host of others like it (all the D's: doubt, depression, discouragement), beckon me to come roll around in their mud rather than remaining in the pure water of the Word.
But PRAISE GOD. The blood of Christ and the Word of God have more power to cleanse than any of sin's power to stain.
So I flee to Him for refuge. And Jesus leads me into the inner sanctuary of God.
3. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever. (2 Corinthians 4:17-18 NLT)
It is NOT lost on me, that the Elijah of the Bible was known as a SEER!!!!! An Old Testament prophet was given a supernatural ability to see into the things of God.
So I have prayed that any physical sight lost for Elijah would be returned 100 fold with spiritual sight. And that he would lead our family in this way of thinking and seeing. It is so easy to be wrapped up in what I can taste and touch and see. And while it is very right for me to be present among these things, the Lord has been trying to teach me for many years that "there is always more going on than what I can see."
Sometimes, it takes having something happen that just cannot be made right in this life, in order to become more fully alive to the next one.
I have always believed in heaven!!! But I have not longed for it in the same way before now. Until then, I want to be one who sees what is really going on. I want to see into the things of God.
4. We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies. (2 Corinthians 4:7-10, NLT)
This is not meaningless. And we were not entrusted with this story because we are so strong and amazing and gifted as story tellers. No. We were entrusted with this story because we are fragile jars of clay. Every crack and break leaves more room for the light of Christ to be shown. His power is made perfect in my....weakness. And pain gives way to empathy. It becomes like a huge blanket, knit together...a network of those who have suffered. I have more empathy than ever for those who are suffering. And that blanket, that network, flows from its head...OUR head. We have a Savior who suffered for us. And so I pray, that my brokenness will give way...that others might see the LIGHT of Christ in me. HE is worth beholding.
There are so many more lessons to learn....and I'm sure I'll have to learn even these over again. But my Teacher is strong, steadfast, and gentle. He teaches with patience and sympathy for my hurts.
For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin.
Monday, May 11, 2015
This is one of my favorite pictures of Elijah. He is only a few weeks old. It is also one of the pictures that makes me cry when I'm alone at night. I look, longingly, at both of his beautiful eyes. You can't tell that anything is wrong.
I didn't know....and quite honestly, he was diagnosed and treated at 7 weeks old. We were still getting used to having a new baby! Elijah's case was particularly rare, since the average age of diagnosis is about 2 years old.
This week is National Retinoblastoma Awareness week. If I could encourage two things for every parent it would be:
1. Make sure your child has had a red reflex test-either before leaving the hospital, or at his first visit to the pediatrician.
2. Take photos of your children with flash. Pay attention to the way their pupils respond to the light.
If you as a parent, notice something out of the ordinary, don't dismiss it lightly.
If you want more information on retinoblastoma, here are some helpful resources:
Elijah is a bold and brave little guy. I'm not ready to be posting pictures of him just yet....but I am saving up for this onesie for when we are out and about:
Wednesday, May 06, 2015
I truly am so honored to be your mama. I can hardly believe how quickly the time has passed. I could never have imagined having such a lovely young lady as my daughter. I can honestly say that it is my pleasure and one of my greatest joys to spend time with you. You have a gentle and quiet spirit, which is so very precious to God. You have the most amazing way with little people, and you are a gifted teacher. You take great delight in beauty. We have a joke that we are "heavy drinkers", because we like tea, coffee, and pretty much anything else fun to drink. You are wise beyond your years. You know how to laugh and enjoy, and yet make choices in line with your convictions. Quite honestly, you have become one of my best friends and I am so thankful to the Lord for entrusting such a precious gift to our home.
My deepest prayers for you this year are that you would forge habits that would serve you the rest of your life: habits of communing with God, loving and treasuring His Word, casting your cares upon Him, and worshipping Him in all things. I pray for deep and abiding friendships for you-ones that will last and spur you on in your love for Jesus. I pray that you will discover and really "own" all the ways God has gifted you, that you might use them for His Kingdom and His glory. Most of all, may you know how very deeply you are loved. You are a Daughter of the King, and you have a place in the Kingdom. May you know and love the voice of your Shepherd. I love you.
For the King,
"For this reason I bow my knees to the Father of our Lord Jesus Christ...
that He would grant you, according to the riches of His glory, to be strengthened with might through His Spirit in the inner man, that Christ may dwell in your hearts through faith; that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the width and length and depth and height— to know the love of Christ which passes knowledge; that you may be filled with all the fullness of God. Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen." (Ephesians 3:14, 16-21 NKJV)
Tuesday, May 05, 2015
A few years ago, this beautiful, shy, amazing young woman came into our lives. The Lord clearly identified her to me as someone who would be very special in our lives....and she is!!! Since that time, Ambree Shea has become more and more a part of our family. We have had many adventures, many awkward family moments, and lots of family reading time. :)
There really aren't words to express how dear she is to us. But these past few months....well. Let's just say that the Lord knew we needed her. Through Elijah's birth, to investing in Ben and my marriage through date nights, and of course....through Elijah's appointments and treatment at CHLA. Ambree, you have served our family in ways that I can barely express gratitude for except to say: thank you. From the depths of my heart...thank you. I love you so deeply and I am so honored to have you as part of our life. Happy 18th birthday to a fine young woman. You are a gift from above and I cannot wait to see how you change the world and shape God's Kingdom. I love you.
Monday, April 27, 2015
Elijah had his first outpatient eye exam this past week. I decided to bring Emma with me since her birthday is coming up and it would give us a chance to spend some time together, as well as allow her to see Children's Hospital (CHLA).
Emma, Elijah and I set out on Wednesday afternoon. We would be staying at the Ronald McDonald house since we did not have an exact time for the eye exam on Thursday.
Wednesday afternoon the hospital called to say that we were first in the line up since Elijah is the youngest patient. I was to wake him at 4am for his last feeding, and we needed to check in at pre-op by 6am.
We stopped at BJ's Restaurant for a yummy dinner:
And then arrived at 7:45pm to check-in (you have to check in by 8pm!!).
We got checked in and settled, and got to bed by about 9:30pm.
Just after midnight, we were awakened by a LOUD noise accompanied by flashing BRIGHT lights. The fire alarm! We rushed to get shoes on, I grabbed Elijah, and out to the street we went.
Fortunately, it was a false alarm. Out in the street, I saw a woman and her daughter that I had met previously in the hematology/oncology department. The 14 year old girl has a reoccurrence of brain cancer. She is a sweet young lady who seemed to really enjoy Emma.
We finally got back to the room and got everyone settled in. Soon it was time for me to feed Elijah, and then time for us to get up for the day. Emma, Elijah and I headed out and walked into the hospital just after 5:30am.
After Elijah was checked in, we were told that his exam wouldn't actually begin until 8:30am. I told Emma that you do a lot of waiting at the hospital.
They finally took Elijah back and Emma and I looked at the food magazines I had purchased just for the trip. We had Cliff bar snacks as well, since we didn't have any breakfast.
Dr. Kim came in and said that Elijah's left eye looked great!!!! No tumors!!!!!
They had a hard time getting enough blood for the genetic testing-but hopefully it was enough. The genetic testing will determine his exam schedule. If the test is positive, he will have these exams (considered outpatient surgery, so the copays add up FAST!) every 4-6 weeks until he is 3 years old.
If the genetic test is negative, I believe his exams will be every 4-6 weeks for the first year, then they will slow down.
...we decided it was time to eat! We found a great little place in walking distance and enjoyed an amazing breakfast:
Monday, April 13, 2015
I feel like I've done pretty well staying away from the what-if's... I try to discipline my mind and stick to what is true and in front of me.
But Tuesday night, the night Ezra was admitted at CHLA, was a dark night. We were pretty exhausted. I had already been running around with all kinds of appointments, and all I had to go on was:
Ezra's lymph nodes were REALLY swollen
He didn't have a high fever of any kind, or a sore throat at all (which would normally be present with a bacterial OR a viral infection)
His lumps didn't hurt and weren't tender
We hadn't been around cats or any other animals for that matter
No one else in our home was showing any symptoms of sickness
Six days of antibiotics had made no difference
It probably didn't help that at the emergency room check in station, they asked, "So why is he here?"
And as I turned to show them his neck they all said in shock, "Oh!"
And then, the nurse brought in a nursing student and said, "Is it okay if she comes and feels his lymph nodes? We don't really see this very often...."
And, I know I am not a radiologist, but I saw the CT scan pictures and all I could see was his neck and then two or three white masses...with no one to interpret for me.
So, as I finally laid my head down on the pillow that night, the temptation came. "What if I have two kids with cancer? Is that even possible??"
I literally had to sit there and tell myself: you can NOT diagnose lymphoma with a CT scan. I know this. I read this. So, those white spots cannot automatically mean anything super bad....
It's funny how things seem more scary in the night. That night was the hardest moment so far. That was definitely an "I can't do this moment." But. There are some times, some moments, when all you can do is hang on. You can't fathom what is on the other side of it all, and you don't even know if you'll make it to the other side. But you hang on.
I had been hanging on. But that night, the Lord reminded me that even when I am empty, and I don't think I can hang on for one more second....
Well. Even then, He is hanging on to me.
"Weeping may endure for a night, But joy comes in the morning." (Psalms 30:5 NKJV)
Ezra, by the way, is doing much better and on his way back to his "usual" self.;-)
Happy birthday, my sweet girl! My, how you have turned the whole house upside down with your sweet and your spice. You are talking SO much. Today, we celebrated your birthday with:
Homemade (ish) donuts
Fun at the zoo:
And dinner at Grandma and Grandpa's:
At two years old, you speak in mostly sentences....although I don't always catch every word.
You are pretty vocal about your likes and dislikes.
You love books already, and you even love looking at your "Bible." You prefer to "hold hand" when we pray, even at dinner time.
Your name, Evelyn Hope, means "long-awaited hope." We waited for you, for quite some time (especially Emma-it took her 10 years to get a sister!). There is so, so much joy in having another girl in our home. But I think this year, your name is more meaningful than ever. There is a hope that is truer and greater than any we will ever know on this earth. It is the hope of heaven, of being with our Savior, face to face with the Father, fullness of joy, healing of hurts and hearts and bodies and souls....no more death, no more cancer, no more crying. Oh Evie...it is my prayer that you would know this hope, and that you would cling to it. I pray that you would know the Rescuer who created you, and that your joy would find it's completeness in Him. Dance, laugh, and sing baby girl....and do it all as one who knows the Hope she has no matter what hard things come. Our Hope is sure, and it is worth the wait.
"Once you were alienated from God and were enemies in your minds because of your evil behavior. But now he has reconciled you by Christ’s physical body through death to present you holy in his sight, without blemish and free from accusation— if you continue in your faith, established and firm, and do not move from the hope held out in the gospel..."(Colossians 1:21-23 NIV)