An Update, Long Overdue!

IMG_1358

a sweet cape from Pearl’s friend, Harley!

Just when you thought this blog had fallen by the wayside, yet another victim of the fat trimming we’ve done in our life over the last several months, just to stay afloat… Well, this thing isn’t done, though there really hasn’t been a whole lot going on that has merited its own blog post, I guess. In a way, it’s been so long that this will probably feel like one of those Christmas letters that you love so much and never throw away… unless you’re like me and throw them away before reading.

I’m happy to report that Pearl is doing really well. At the moment, she’s battling the same horrendous cold that the rest of the family has been battling over the last few weeks. She’s had more viruses this year than a public library computer, but she keeps beating every one of them! It’s incredible to think that we are starting to look at what her one-year birthday party will look like. In one sense, I want to throw a party so big that it’ll make the fraternities at Vanderbilt blush. The other side of me says get quiet. I go through and read the blog posts that I was posting last year this time, not having a clue that we’d be where we are today. That is simultaneously a reason to shout to the top of our lungs and a reason for silent tears of gratitude and awe. In a way it calls for a bit of reverence as Pearl’s story, just like everyone’s, is about God and not about her. Who knows what we’ll do, but it sure looks like we might actually get to do something!

She has also started something called the Ketogenic diet. If you’re not tube feed, then this particular diet looks a lot like eating sticks of butter for lunch. Actually, with some folks it looks exactly like that! Wikipedia does a good run down of the diet in their first paragraph, but it is basically a diet that hopes to reduce seizures. Sometimes it yields amazing, life changing results, and other times it doesn’t work at all or can make seizures worse. Ruth did a bunch of research, and in spite of my skepticism at first; it seems to be helping. According to the lab work they’ve been doing on her, it isn’t helping much, but according to what we can observe, it really seems to be helping. And as seizures decrease, mobility seems to increase. Her muscles don’t seem to be staying as tight, and she appears to be doing more voluntary movement. She has however, started loosing a little bit of weight but we’re all watching that close and just trying to see if this is something we should stick with.

So that’s how Pearl is doing. Well, that and she now has a swimsuit and will hopefully be joining us at the pool this summer. That’s awesome.

As for the rest of us, we’re hanging in. There’s a lot of difficulty to life these days, and there’s a lot of hard stuff that I don’t really talk about much anymore. Perhaps we were so awestruck by those first few months, celebrating every moment, and I forgot how to talk about the hard stuff. Or maybe after being so publicly vulnerable with this whole process, I’ve started to retreat inward a bit.

I’d be lying if I said we find it easy to relate to most of our peers these days. Our lives are so dramatically different than most of our friends, it’s tough to find tons of common ground. I don’t say that as a judgment as much as I do, “that’s just how things are right now.” The upside of this is that our family as a unit has grown much tighter than it ever has been. Maybe that’s because we get each other. Obviously, we know quite intimately how difficult life is for the other one, and it’s something that you can’t really know unless you’ve been there. So many well meaning people try to offer guidance on things, but life with a special needs child is so different than life with healthy children. So, when you ask how we’re doing and we say, “We’re doing good,” that just means that we’re doing good on our family’s scale, which is probably a different scale than what your family uses. That’s not a good or bad thing. It just is what it is.

It’s not as if we sit around with heavy hearts all the time, though. In fact the opposite is true. Ruth said it well one day when she said, “Yes, we celebrate all that we’ve been given and all that Pearl is to our family, but there is also a level of grieving that constantly goes on.” It’s not easy to see kids that are half of Pearl’s age, smiling, giggling, and moving their body in a controlled and fluid way, while she struggles with the most basic things. I know it’s really not sexy to use the word, jealousy, these days, but I suppose there’s an element of it that is there. So shoot me. It’s tough.

Last week, Ruth and I made the decision to not put our house on the market and to not look for something bigger than our current 700 sq feet. We just can’t do it right now. It’s too daunting of a task. We don’t have enough in the tank to try to attempt a task as big as that, and it seems as though last week, God gave our hearts closure on pursuing that for us. We’ve said since day one that we didn’t want to press the issue, and that at any point, if it seemed like something that he wasn’t doing, we would bail on the idea completely.  Maybe he is teaching us contentment. Maybe he’s working a plan altogether different. I do know that what he plans for us is so much better than what we settle to strive for. Yet another lesson that we’ve been taught through Pearl.

So that’s it, in a nutshell. Life is hard, but everything is fine, and God is teaching us contentment and gratitude. Yeah, believe it or not, we struggle with gratitude over here at Brown International. God has given us all the desires of our hearts, and yet we still struggle. Unbelievable. The older kids are done with parents’ day out for the summer, and Ruth and Brennan have been dipping their toes into the home-school water, trying to get their sea legs before the fall hits. That’s sweet to see. Abbey wants to sit in on every lesson and learn as much as she can… for about 3 minutes. We continue to be amazed at all that God has done with, through, and for Pearl. Having her in our lives is something greater than we could have ever imagined or dreamed up for ourselves, and we are grateful. We’re all doing ok… at least according to our families scale.

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22 thoughts on “An Update, Long Overdue!

  1. Hey guys! Good to hear from you. I worked with an amazing group of special needs adults for 10 years in their home, and the phrase we used was ‘This is the house where weirdness works’. Our good days and bad days were different to an average house, but no less important. Just different – ya know? Your learn to operate with a different level of ‘normal’ and it’s all good. Hope the diet gives some long lasting result – and loving the cape!! Fi xxxx

  2. Your journey is amazing and we continue to pray for all of you. Pearl is so blessed to be in your family. It is so good to see that you continually want to be guided by God. God bless each one of you. Liz

  3. I so enjoy receiving these updates about sweet Pearl and your amazing family. Keep the faith as you always have. You were chosen by God especially for Pearl and both you and she are so very blessed.

  4. Thank you so much for this post. I’ve been thinking of your family a lot of late. I like your choice of “We’re all doing ok…at least according to our families scale.” That is such a perfect way to state it. It just make me want to say, God does do all things well ! Praying He continues in keep you all His care. I love your family and your posts. Thank you for sharing your life with this Grandma from Michigan. I love knowing that even if we never meet here on earth, I’ll meet you all in heaven!

  5. Thank you for the update on Pearl. I pray for her and your family daily. I can only imagine how difficult your lives must be. But Praise be to God he has a plan even when we do not see it. God continue to Bless and keep you all.

  6. I don’t know why it has taken me so long to leave you a message on here, but this post describes 100% of how my husband and I feel. I couldn’t agree with Ruth more when she said “Yes, we celebrate all that we’ve been given and all that Pearl is to our family, but there is also a level of grieving that constantly goes on.” But it is what it is and it’s ok “according to our family’s scale.”

    My daughter, Noelle, was also diagnosed with holoprosencephaly. When we found out at our 20 week ultrasound, I googled the term and came across your blog. I have found so much courage and strength from reading about Pearl. You have inspired us so much that we also celebrate each week of Noelle’s life with a cupcake. We are happy that this Saturday she will turn 3 months old. Although there are certainly challenges, we couldn’t imagine life without Noelle. She is our joy and the time we have with her is so precious.

    I can’t thank you enough for sharing your stories, your honesty and your life with us and the rest of the world. I am so overjoyed to see how well Pearl is doing.

    • April,
      It is such a privilege to be an encouragement to anyone in a similar situation. I am so glad that little 3-month-old Noelle is a part of your family and a blessing.
      There are definitely challenges in our lives. And its a little daunting to realize there always will be. The challenges will change a little on the way, whether its about therapy or surgery or illness or grief… but there is so much joy in the middle of it all as well. Life may well forever seem a little bittersweet, but I’d rather have this than not. And I will look forward to a day of redemption when the bitter half falls away.
      I pray that your lives are filled with blessings and peace and endurance and support. Thanks for leaving a comment…. its so nice to “meet” you.
      ~ Ruth.

  7. I’ve been following your posts for a long time now, I’ve shed tears, rejoiced and continue to pray for all of you. Your family has been a blessing to so many people. I can’t even imagine what you all go through, but I’m so glad to know you are trusting in our Almighty Heavenly Father to hold you and guide you!!! Thank you for keeping us updated, even though it may be burdensome at times, I look so forward to hearing from you. May God continue to bless and keep you.

  8. So glad to get an update today! I was just on your blog yesterday wondering how your family was getting along and how Pearl was faring. God is so good! I am inspired by your example, and truly in awe of your family’s resilience in all your circumstances. Though I don’t pray for your family every day, I do pray for you all and for Pearl as the Lord leads me. I also thank God for your life’s testimony that speaks to my own life that things aren’t so bad even when it seems that way…I look at what you all have to do on a daily basis and I wonder who am I to complain or to surrender to my circumstances? With God AALLLLL things are possible! In that your family is an amazing example and testimony. Thank you for your update and I will keep praying for you all as the Lord puts you on my heart. I was sorry to hear that you won’t be getting a larger home, I will keep praying that the Lord will provide for your every need and to bless you beyond anything you could hope to imagine or want! Life has its ups and downs but it’s lived in the daily routine of everyday life, keep the faith ya’all and God Bless! I look forward to seeing Miss Pearl hit the 1 year mark with awe for our Lord and God for all He has done and is doing in Pearl’s life and that of your family.

    Much Love and Blessings to you, Ruth, Brennan, Abbey, & Pearl,
    Your Sister In Christ
    Tamara

    • Hi Tamara,
      Even for us, its a semi-constant battle to reconcile that life is full of challenges but that it is also a gift and a blessing. Most people have challenges of some kind. Most people also learn and grow from those challenges. We have a family that is full of love and have much to be grateful for!
      And as for the house, if we can either add a little space to our current home or just learn how to use our space a little more efficiently, that would be wonderful, but not necessary. There are definitely people with both more and less square footage than we have, and that doesn’t always indicate how happy they are! We are trying to be content with what we have.
      God is good and blesses our family in so many ways!
      Thanks for your care and prayers,
      ~ Ruth.

  9. Thanks for the update and for your honesty. I can definitely relate to the jealousy issue. Praying for you guys!

  10. I continue to be amazed . . . oh yea, that’s a verse: “Stand and be amazed . . .The hands and the heart of the Great Physician continue to hold Pearl and bless us all!

  11. Hi Eric and Ruth,
    That’s so exciting that sweet Pearl is about to have a birthday! Although we had a different outcome for our HPE daughter, we can still relate to your comments about struggling with gratitude and dealing with jealousy. Perhaps it is just a lesson to those who have healthy children to never take that for granted. It has certainly made us more attentive to the time we have with our older daughter. You are a strong family, and like our own story, yours will be revealed fully only in eternity. We keep you in our thoughts and prayers every day.

    • Hi Anissa,
      Your family is often in our thoughts as well! I often wonder what heaven will be like, and what our girls will be like there? I remember writing to a friend the week we found out about Pearl’s condition as the realization hit:
      “Living in a fallen world sucks (what an understatement!). I thought that before this week when I sinned or my kids or husband did or when childbirth seemed hard. Now it seems I will have to wait for a redeemed world to fully know one of my children.”
      Maybe when we’re there, God will reveal more of what His plan has been. Maybe we won’t need to know so much anymore.
      I know you can to relate to so much of our struggle, and I’m thankful for you. Thanks for the reminder to fully embrace all that we have to love!
      May God bless you all!
      ~ Ruth.

  12. Wow! So good to hear how you’re all doing. And that picture!!!! LOVE that red hair!! We’ll continue to pray for Pearl Joy and God’s blessings on your family.

  13. I totally understand the “on your family scale” and I don’t think it’s wrong for you to be a wee bit jealous when watching other babies achieve thing Pearl has not. No matter how strong your faith is and no matter how grateful you are to have Pearl in your lives, you are still human! I will continue to pray that life gets a little easier for you; however I won’t pray for a specific way, just that it gets easier.

    Do you and Ruth ever get a chance to have a date night or just a night alone not talking about kids? Maybe that is something you could start to do. See if anyone would be willing to learn how to care for Pearl for a few hours and if they’d be willing to do it for free! I know if I was closer I most definitely would! As my boyfriend has said many times, you can only make so many withdraw from you personal checkbook before you have to start adding deposits. If not you’ll become overdrawn and that’s never a good thing!

    Thank you for the update. It’s always nice I hear from you and it doesn’t always need to be good news; because we can’t help if we don’t know what struggles you are facing! Sometimes sharing your struggles is a good thing… It’s cathartic for you and we know where we are needed. Just a thought!

    Gods blessing for all of you!
    Liz

    • Liz,
      Thank you for your care and concern and prayers!
      It’s amazing that already certain parts of Pearl’s care have gotten easier. I’m more familiar with the different doctor’s offices, therapies, medical terms, and routines… I even changed out Pearl’s feeding tube for the first time last week by myself! Life is constantly evolving, but a huge blessing is that things often change gradually… or at least the response needed from me doesn’t happen all at once. I’ve been able to add more fun things and non-Pearl responsibilities into our family life and that feels really good, too.
      Yes, we do occasionally get out for a date! Our insurance provides for a nurse to care for Pearl in our home a few nights per week – mostly so we can get a good night’s sleep! but also for respite, so we can get out for a date or answer comments on the blog 🙂 – and we do have some friends who are able to help with the older kids, too. I agree, a little time to step out from the sometimes overwhelming responsibilities is a huge help to our marriage and mental state.
      So anyway, yes, life will forever more be hard in so many ways, but its not always overwhelmingly so. I hope that makes since…
      ~ Ruth.

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