A Possible Change in Direction

If you follow Pearl’s story on twitter at all, then you probably already know that we had a bit of a difficult appointment with her pediatrician yesterday. It was difficult not because of the way the information was discussed, but because of the nature of what needed to be discussed. I can’t sing the praises of her pediatrician enough, and even as our discussion progressed, it was obvious that this wasn’t easy for her to talk about, either.

As you may know, Pearl has had an extreme increase in seizure activity over the last few months, and at this point they appear almost uncontrollable. Whereas we were hoping to discuss ways to get them under control before they really started to take a toll on her body, our conversation yesterday was that they have taken a significant toll on her body already.

The night before this last appointment, even as I scrolled through pictures from 6 months ago, it was obvious that Pearl’s awareness, energy, and overall health aren’t near what they were back then. Each seizure that she has makes her more susceptible to another seizure, and each one chips away at her physical and mental reserves in a fairly severe way. As we discussed this with her doctor, it became quite clear that yes, these seizures have been wearing her out for quite some time now, and because we see her every day, it has been less obvious to us just what a downward slope she’s been on.

I want to be clear and say that our discussion was not that Pearl’s life is certainly coming to a quick end. There is no way to say for certain at what point she will have her last seizure. We can’t know these things, but what we can say is that she has obviously been on a downward trajectory and as long the seizures can’t be controlled, that will likely continue.

Nor was our discussion that Pearl has days or weeks to live, and we should reconsider hospice care right now. Our discussion was that as we delve into looking at some other and maybe experimental treatments, we make decisions based on comfort and immediate quality of life for her more than on what treatments will mean for her, long term.

We’ve really been trying to find a sort of normalcy over this last year, and as Pearl has grown, we’ve been more intentional about trying to go about life at our normal pace, and had even planned a beach vacation for July. Well, this puts an abrupt halt to that type of living for us. There’s not a normal life for Pearl. It makes no sense to try and carry on as if that’s possible or even good for her or the rest of our family. The closest thing I can think of to compare this to is right after 9/11 when we were told to get back to the mall and act as we hadn’t been hit hard by terrorists, so they wouldn’t “win.”  Well, the reality was that we were hit really hard. And it stung. And life ought to stop long enough to work through these things. You don’t carry on as if nothing happened. They won. Not long term, but for that moment, they won. Maybe that makes no sense at all but I don’t know how else to explain it in a relatable way.

So that’s where we are. We all had a bucket of cold water thrown on us yesterday, and we are wide-awake to the reality that Pearl is not doing well and that her body is worn from the seizures. We’re not giving up, and we hope to try some new things, but we are processing things through a different perspective than we’ve had in quite some time. Pearl’s body is weak and tired, and we’re going to operate and make decisions based on that more than we have been doing.

We’re still going ahead with plans for a 1-year birthday bash for her. In fact, go ahead and mark your calendar for the afternoon of July 27th. We’re planning a picnic/potluck style party at Dragon Park here in Nashville. If you’re not familiar with Dragon Park, it’s fittingly right across the street from Vanderbilt Children’s. If you are reading this, we’d love for you to come out. We’re hoping that having the party there will help those who we may not know as well still feel comfortable coming to celebrate. I’ll post more details here as plans come together.

Please continue to pray for healing. Please pray that her body will be able to rest, and that she will be able to find enjoyment in whatever days she does have with us. My mom said it well to me last night, when she said that God has been so good to gift us all with these days with Pearl, and at some point he will be so good to her to give her no more days. I think that’s a good perspective to maintain. Oh, to be privy to that conversation that Christ will have with her when she comes home… To hear him explain it all to her, to watch her face light up as he explains all that she has accomplished for the Kingdom, without even trying! To hear him tell her about himself, and all that he has done for her! That’ll be a sweet day for Pearl, and a bittersweet day for us who are still on the way home. Thank you for praying, and thanks for sticking around all this time.

-Eric

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50 thoughts on “A Possible Change in Direction

  1. I was just thinking about you this morning, wondering how Pearl is doing. I am so sad to hear that she is struggling. All I can say is that you all have my love and prayers.

  2. My daughter Sarah and I will be praying for Pearl and your family. I can not even imagine how tough this is. I will be praying for healing and peace and all the things that you need that God knows! Take Care!

  3. May God remain with y’all always. I ask my infant son and 5 y/o grandson, who are both in heaven,to pray for you all.

  4. I really have no words other than THANK YOU, and I continue to pray for Pearl and your family. God’s plan is perfect as you know, and just as He is working through Pearl, He is also working through you to touch lives for the Kingdom. THANK YOU!
    Because of the Cross,
    Kim

  5. Praying for our fellow TN Girl! Hoping the new treatments improve the seizures but know God is in control and it will be a great day when she is welcomed back into the kingdom! Sending love to the entire family ! HoPE to make it in July!

  6. So sorry that things are not looking good. Keep your faith as she has made it this far. I do not remember has she been on the Ketogenic diet for her seizures? I have heard other people talk about it and for some it has worked. My thoughts and prayers are with Pearl and her family.

    • Yes, we’ve been trying the Ketogenic Diet since the beginning of April. It seemed to help a little bit for a couple of weeks, but then her seizures got worse again. We’ll talk with the neurologist this week, but will likely come off the diet now. Thanks for asking!
      ~ Ruth.

      • Ruth – I would love to know if you found a doc in Nashville that helped with the keto diet … I haven’t found one and we need one that will discuss it with us. We are friends with Lendas & Myricks … they mentioned we should chat!

  7. As always I am amazed with how eloquently you share Pearl’s life with us. God certainly knew what he was doing when he chose you two as her parents!!! Continued prayers for your family and a few extra special ones for Miss Pearl. Finally, a huge heartfelt thank you for your willingness to share your family with so many strangers; I feel blessed to be part of your prayer warrior family!

    Much love from IN!
    Liz

  8. That last paragraph…I can’t even put into words what it did inside of my heart. Your beautiful perspective on life and Pearl’s amazing life is testament to the goodness of our God. Thank you for sharing this journey with us and please know that there are people you may never meet this side of Heaven praying for your family.

  9. May God bless you and your family always…..I will continue to pray for pearl and all of you who are close to her…….comfort, strength, healing, and above all joy.

  10. Pretty Pearl in Pink I hope that the new treatments give you some rest from your seizures and make your days more comfortable. You are blessed to have such wonderful parents that love you sooo much. I would love to be able to join you for your first birthday but I live in Australia which so far away. You have touched people from all over the world who pray for you every day. God bless you all. xxx

  11. As i read your blog tears stream down my face..i pray for God to be with you and your family..pearl is such a blessing..thank u for sharing your family…xoxoxo for pearl

  12. What a beautifully written post. My prayers are with you and your family and I hope your days are full of love and happiness with your little miracle. I would also have loved to be there but Scotland is a bit far to travel. My son, Isaac, and I will be having a little celebration here for you.
    Your love for God and your family is a constant inspiration to me and will continue to be. God bless. xx

  13. God bless you all. This precious little girl – just wish I could hold and comfort her. VERY grateful I know she has been born into such a loving family though that does that for her – and more – every moment. You are all in my prayers.

  14. I know first hand how this conversation feels and affects every cell in your body . We had this same discussion and made some tough desicions concerning our Tyson. His little body also was so weak from seizures . He is now a beautiful Angel in Heaven and in his 8 months and 7 days here on this Earth he became our hero . Pearl is a beautiful gift and I will continue to pray for peace for you all.

    • Thank you, Missy.
      I wish that no one had to face losing a child (or the thought that it might be coming soon). The beauty is the promise of redemption. My loss will only be a temporary one. And Pearl’s won’t be a loss at all, but a healed body in Heaven with the Father who created love.
      She is a gift. And so are our other children. And we are such a blessed family. We have each other, and a loving Father and Savior, and a community of people who love and pray for us. Thank you for sharing and for being a part of our family’s story.
      ~ Ruth.

  15. You are all loved and we will be in daily prayer for you. Pearl is a precious gift from God and she has already given you and your family wonderful memories. We look forward to hearing about her 1st birthday celebration and will be praying for a healing for this dear little one. Praying for God’s perfect peace for all of you.

  16. I declare health and life over Pearl and strength and joy over all of you in the name of Jesus. He is ABLE to heal your precious little one and I am believing for a miracle and praying that many, including your family will agree with me in this. Don’t accept what the enemy is trying to do, Death and destruction are NOT God’s will for Pearl, BELIEVE and TRUST that Jesus came to give her life abundantly!! Speak to this mountain of seizures and command them to go by the authority Christ has given you and Pearl’s body healed by the power that raised Jesus Christ and now lives in you! Please read the Word and remember that it is true and God’s power is real. I understand growing weary and I know that this is a difficult time but you have authority over Pearl’s life. See Matthew 17 : 14 When they came to the crowd, a man approached Jesus and knelt before him. 15 “Lord, have mercy on my son,” he said. “He has seizures and is suffering greatly. He often falls into the fire or into the water. 16 I brought him to your disciples, but they could not heal him.”

    17 “You unbelieving and perverse generation,” Jesus replied, “how long shall I stay with you? How long shall I put up with you? Bring the boy here to me.” 18 Jesus rebuked the demon, and it came out of the boy, and he was healed at that moment.

    19 Then the disciples came to Jesus in private and asked, “Why couldn’t we drive it out?”

    20 He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

    Please notice that Jesus rebuked the disciples who should have known better, not the father. I mean this to be encouragement and hope to you. Please know I share it in love to strengthen you and remind you that our God is a God of supernatural power and nothing is impossible for those who believe and choose to receive his miracles. I will keep praying always speaking life and restoration, healing and wholeness for Pearl and all of you. Don’t give up…faith is not believing that God CAN do something but KNOWING that He WILL!!

  17. This is the first I have heard of you and your little girl. I just wanted to say that you and your family will be in my thoughts and prayers. I can’t imagine going through something like this. I hope you have lots of love and support around you. I hope you can take pleasure in all the moments you have with your baby girl. I know she can feel your love.

  18. Here, in Australia, I am praying for little Pearl and all your family. Such a precious little girl. May our Lord hold you close and give you the comfort you need as the future unfolds. Thank you for your testimony and strength through a difficult but abundant and blessed life of little Pearl.

  19. Eric…we met at church a few weeks ago. We are friends with the Lenda family. I would live to help with the birthday party. Maybe we can talk this Sunday! Happy Father’s Day! Also, I told you about my friend that is doing the diet change with her child with Ds who has seizures. She would like to contact you but could not find an email address. Can u email me at myrickdf@yahoo.com.? Praying for all of you!

  20. KNOW WELL that Pearl is in my prayers. As are all of your family. God is good, and HE only knows when Pearl has accomplished her mission here on this earth. God be with you all in this time of trials.

  21. just saw this. oh my heart melts for you guys and for Pearl. thank you for sharing your story again and again. last paragraph was hard, but so good to read. we love you guys.

  22. Prayers for sweet Pearl and her adoring family. Your devotion to her is beyond measure, and you are right, she and Christ will have the most marvelous meeting one day. Keep strong and know that you were chosen especially for her for a reason.

  23. We will be out of town for her birthday celebration as we were last year for her birth. I remember checking my email often hoping for an update on her arrival. We don’t see your sweet family nearly as often as I’d like and I thought she was in a place she could carry on indefinitely. I’m praying that her sweet little body can rest, that your whole family can too.

    • Thanks, Lemesa.
      We had kind of thought the same for the past little while- that Pearl was at a stable place. Maybe that was wishful thinking. But her biggest struggle right now is seizure control. Her body can’t thrive and she can’t learn when she’s seizing SO often. God has granted her a reprieve… We started another new medicine Sunday night and Pearl’s been resting better than she’s been able to in weeks. We pray that this will continue, but we may end up coming back to this issue again.
      Thanks for your love and prayers. We’ll miss you at the party but hope to see you around soon.
      ~ Ruth.

  24. Tears in my eyes after reading your post. Thank you for sharing your beautiful little girl with us. Praying for all of you, knowing that you are in God’s hands every step of the way.

  25. We cannot imagine a more beautiful statement of this sad truth; and I am sure the greeting by Our Lord will sound something like what you suggest. Pearl has been from the beginning and will remain in our nightly prayers by name. May He make these difficult times as bearable as they may be.

  26. I am new to Pearl’s story, but I will be praying for her, and the rest of your family. I have to say that, not only was I touched by your post, I was touched by the comments. I thought to myself, THIS is the Body of Christ. THESE are my brothers and sisters. I look forward to meeting you all when we are finally Home.

  27. You are loved by so many you will not meet until we are all home. God loves you and He loves our sweet Pearl, whose journey you have shared with us. With the rest of the Body of Christ, I pray for continued GRACE, peace and mercy; pressed down, shaken together and overflowing!

  28. DO NOT FEAR WHAT MAY HAPPEN TOMORROW,
    DO NOT FEAR WHAT MAY HAPPEN TOMORROW,
    THE SAME LOVING FATHER WHO, CARES FOR YOU TODAY
    WILL CARE FOR YOU TOMORROW AND EVERYDAY.
    EITHER HE WILL SHIELD YOU FROM SUFFERING OR
    HE WILL GIVE YOU UNFAILING STRENGTH TO BEAR IT.
    BE AT PEACE THEN AND PUT
    ASIDE ALL ANXIOUS THOUGHTS AND IMAGININGS.

    ST. FRANCIS DE SALES

  29. I’m sitting at my computer with tears in my eyes holding my 8 month old baby girl. Your words are beautiful, Eric, and you are right. The day she meets our Creator will be a glorious day for her. I wish my family lived close to Nashville so we could come and celebrate with her. You have a beautiful family and you will all continue to be in my prayers.

  30. Our entire Sunday School is praying for your family, but especially Pearl Joy. Her name is so appropriate. We so appreciate your testimony and the love you have for this sweet little girl. We know your road is hard and difficult, but your faith and love shines through. You are such a godly example of what God calls us to be. Thank you, all of you!

  31. I came across your blog after watching a video on GodVine about your precious daughter. My youngest daughter had a similarly rare neurological condition called Microlissencephaly. We too struggled to control her seizures. We tried many different medications as well as putting her on the Ketogenic diet. There was one other thing that her neurologist talked to us about and after much thought and prayer we decided to give it a go. Not sure if it’s something you’ve heard of yet or not, but there is a device called a vagal nerve stimulator (VNS) that is implanted into their chest. It has wires that lead up to the vagus nerve. The doctor programs the device to produce weak electrical signals that travel along the vagus nerve to your brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures. While it didn’t allow my daughter complete relief from her seizures, it did make a significant difference.
    I don’t usually, in fact never before, reach out and comment on a blog of someone I don’t know. But after seeing your video and the photos I had to. It is unreal how much your beautiful daughter resembles mine. Took me back to her early days and all the struggles and triumphs we had with her. My daughter wasn’t expected to ever leave the hospital after her birth yet we were blessed to have her nearly 7 years. My life is forever changed to have had to opportunity of being a mother to an angel like her.
    May God continue to bless you and your family. I wish you the best in finding peace and comfort for your Pearl!

  32. God has used Pearl to touch people’s lives around the world. Your love and commitment to her is so beautiful and God’s grace and strength flow through your honest words. I weep with you over her seizures but rejoice with you over your love for her and the hope we all have in Christ for her. God bless you and your family. I continue to pray for your sweet baby girl.

  33. Wow, I have just now learned about your sweet little Pearl Joy, through a Facebook post– the original news cast from about a year ago.– When I heard the blog mentioned I immediately started searching for it to see how she is doing now! I am happy that I found it– Your testimony is beautiful and strengthens us who may have other struggles we are dealing with in our lives. Your decision to not abort and enjoy her for however long you can, taking each day as it comes is commendable and very inspiring! It is obvious how much she has blessed not only your lives, but that of so many of us “strangers” who have never even met her!! Thank you for sharing your love and lives with us. I so so wish I lived close to Nashville so I could come meet your precious jewel, but know that I will be thinking about you all that day and celebrating in my heart! Happy happy birthday, Pearl dear;
    Happy days will come to you all year.
    If I had one wish, then it would be
    A happy happy birthday to you from me!- with many more to come!!
    I will be praying for your family and putting your names on the prayer roll at my church. May, God’s will be done– God bless you all!!

    I

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