Is it really well with my soul?

Posted by on Mar 8, 2013 in Update | 9 Comments

Traveling to all 50 states has been on my bucket list for some time now. I have now crossed Texas off. Later this year I am going to check Massachusetts off. After talking with other families, Luke and I have decided to check Boston Children’s Hospital out. Originally, the plan was to go down to Dallas and have Dr. Fearon (an Apert expert) do all her surgeries. While this still might happen, we want to explore all our options. It is crazy to think that this one wish of mine is happening….just not in the way I thought. But, isn’t how that usually works? Things not going as originally planned. Luke and I had grand plans for our life. We would finish college, get jobs, get married, buy a house and have kids some day. Well….all those things have happened, just not the way we thought they would. It’s okay though….crazy life makes for fun stories to tell grandchildren right? Life has thrown us ups and downs. Phoenix has defiantly been an up…but Aperts….not so much. Don’t get me wrong I love Phoenix and who she is 100%. Yet, there are times I want to cuss out Aperts. I want to scream and shout till my voice gives out. I want to take Phoenix and run away to the county and raise goats and grow peach trees….somewhere where having tons of cats isn’t look down upon. On the other hand, I am content with this new life. It is not what I planned…but, thankfully, it is what God has planned for me…. and His plans are always better than mine.


How much do you wanna bet I can fit both in my mouth!?

How much do you wanna bet I can fit both in my mouth!?

After having some issues with Children’s Mercy here in KC we finally have an appointment with a sleep specialist so that we can do a sleep study. However, the appointment isn’t till May! I was given the okay to call each day to see if there was a cancellation. There should be a cancellation before May right? At Phoenix’s last check up her pediatrician found a heart murmur….which is typical for kiddos with Aperts. She will be having an ultrasound just to make sure there is nothing else going on. Today, her OT suggested that I call an ophthalmologist for her eyes. Her eyes are further apart then average so they have a tendency to look in opposite directions. Again, typical for Aperts. I didn’t even know what an ophthalmologist was five month ago.

Sometimes we just need a nap in our vibrating chair!

Phoenix is growing like a weed! She is getting so big…..I am having to remind people that she is younger than she looks! Recently, she started rolling from back to belly! Which is great except when it happens when I put her down for a nap…. then she cries till I go in and flip her. Little Stinker. I am consistently being amazed on how she is figuring things out. Earlier this week I placed a block next to her. She squeezed the block next to her leg with her arm, lifted both her arm and leg at the same time to bring the block up so she could hold it with both hands. I made her do it several time to make sure it wasn’t a fluke. It wasn’t!  A few days later she started picking toys up with her feet to and bringing them up to her hands! Also, she is starting to scoot off her play mat. Yikes! She is becoming mobile!!

Bella doesn't even see me coming! Mwahahahaha!

Bella doesn’t even see me coming! Mwahahahaha!

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.



  1. Lori Tucker (Castile)
    March 8, 2013

    Beth, I am a distant cousin to you and I live in Piedmont with your Uncle John Radford. I want you to know, you bless me daily. You are an encouragement to me (and my children are grown). I pray that God will continue to strenghten you and encourage you and lead you (and your husband) in the direction He wants you to go. I love watching your baby grow and hearing about her accomplishments. I too am amazed at how God gives children the ability to learn, no matter what the situation. He is good even when we do not understand things. His thoughts are higher than our thoughts and aren’t we glad. We, in our own thoughts and abilites, are so limited but with God all things are possible. Remember——

    Proverbs 18:10
    The name of the Lord is a strong tower: the righteous runneth into it, and is safe.

    Hebrews 4:16
    Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.

    Matthew 11:28
    Come unto me, all ye that labour and are heavy laden, and I will give you rest.

    Take every thought, every dream, every wish, every concern, every hope, every disappointment, every breath to Christ. He is and always will be our only true strength.

    God bless you, Phoenix, and your husband.

  2. Jill Hudson
    March 8, 2013

    Your faith and attitude is very encouraging to me. Thank you so much for your positive spirit. There is a story that goes with that song ” It is well with my soul”. If you have not heard it you should. Have a great day!

  3. Sally
    March 8, 2013

    I love the way you are sharing the wonderful and difficult parts of being a parent. It is an amazing experience and you get to do extreme parenting!!

  4. Becky
    March 8, 2013

    That’s amazing how she’s learning to pick things up!! She’s a smart girl!:-) Great blog, thanks for sharing. Love you!

  5. Sondra Needham
    March 8, 2013

    Beth your family is amazing ! I believe that God has great plans for you and your family.
    It’s so sweet how Phoenix is using her feet to get her toys. She is adorable !
    Thank you for sharing!! Xox

  6. Debbie Kubiak
    March 17, 2013

    Beth — seeing pictures of Phoenix just amazes me. And the way she is learning to pick up things. Children are so resilient to everything in their path. She is a smart little girl. Thank you for friending me on facebook. I lived across the hall in the condo from Amanda and then Danielle and Anthony. Please keep us all updated on Phoenix. She is one amazing little girl. She will overcome any obstacle in her way.

  7. Debbie Kubiak
    March 18, 2013

    Phoenix is so precious! She is definitely in my prayer.

  8. Jo Ann Milan
    April 9, 2013

    We attend your father’s church. We enjoy seeing Phoenix when you visit and I enjoy reading your blog. So happy to be able to see her grow. She sure is a smart, good, happy little girl.

    I had heard years ago how God gives special children to special parents. You and Luke sure are special parents – we can see it on Phoenix’s happy, cute, little face. May God bless all of you. You are in our prayers daily.

  9. Carol Blansett
    April 26, 2013

    I am in Becky’s Sunday School class and we’ve been praying for Phoenix since she was born, and you, her parents. One day last month I was on my way to work and a semi truck turned at the light where I had stopped. The only name on the truck in BIG letters was, “PHOENIX.”
    Since that day, at that stop light I remember to pray for Phoenix and am so happy that God in His wisdom gave a senior citizen this to remember her each weekday.
    And . . . I have not seen that truck since!
    Love and prayers,
    Carol Blansett


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