Sun 24 Jun 2007
On Brokenness
Posted by Jane under Updates
[25] Comments
When people tell me, “Children are such a blessing”, I sometimes find it a bit trite. Like some kind of pollyanna brainwashing to get people to buck up and stop complaining about all the things about parenting that don’t make it into Mother’s Day cards. Like open heart surgery. Or methadone withdrawal.
I’m trying to figure out why I’m so cynical. Maybe it’s that during our adoption process and even more so during my pregnancy I felt entitled to healthy children. Normal children. And I’ve been feeling lately that “everyone else” has all that. This is ridiculous for so many reasons I won’t even bother to list them all, but here are the big two…
I have met so many families these past months that are facing a similarly unknown prognosis for their child. Families who have children much sicker than Ramona. Families who don’t have anywhere near the support and resources we have. That’s the obvious one: We’re not the only ones with a sick baby.
But here’s the kicker for me. Baby’s are a blessing, not an entitlement. I have met countless women who struggle with conception, pregnancy and adoption. Some of them have resolved their infertility, some of them have not. And I have two babies. Two beautiful, precious babies. And the joy they add to my life is indescribable. They are now a part of the fabric of my soul. Asking for anything else from God would be absurd. Asking for a different baby, a healthy baby, would be like asking God if he could trade one of my legs in for a third arm. It just wouldn’t make sense.
Ramona’s heart, her brokenness has led me many times to meditate with humility on my own. Whenever I find myself fantasizing about how Ramona “should” have been, I remember my own imperfections and the mercy of God. I am reminded of the grace of God. And His providence.
I am still struggling with how to balance grieving over Ramona’s illness and celebrating who she is. I want her to be healthy and happy of course, but do I wish all her chromosomes were complete? I’m not sure. Would she still be Ramona without the deletion? Is our brokenness a part of our essential nature?
I invite your thoughts. I am grateful for the wisdom and kindness in your responses.
Things here have been rough these past few days. Ramona continues to sleep poorly at night. Simon has a cold. We are weary. Thank you for your prayers, the meals and the offers of help. Here’s a comparison shot of Ramona in the bumbo seat before and after surgery, wish I could figure out how to post them side by side, she looks so much better to me now.
Love, Jane.
I often pray to God that He will heal Ramona — completely, including restoring every chromosome to completion, and fixing every problem that has arisen from a deletion. But maybe you’re right — would she still be Ramona then?
Love the before/after. Would you say these 2 pics are representative of how she generally was before surgery and generally is now after surgery? In other words, do you sense she is generally stronger, happier, perkier, sassier?
Jane, I don’t know the answers. I can make theories that sound right in my head but I just feel I want our babies to live long and happy and healthy.
So, I don’t have any answers… just wanted to say Ramona looks SO much more energetic and engaged in the second picture.
I love the pics my first thought was, wow her color is so great. She sits up so well.
I feel like we are all so broken and in need of healing. Our need for God to come in and heal it all and forgive us. If those wounds he has healed never happened would I be the same? Most certainly not.
Do I pray everyday for Ramona to be healed, yes. I also know that she will still have to face all kinds of things where she will need mercy, healing and grace, even if God answers my prayer today. It will all make her who she is and will be.
I want her to be loved, and she is. You, Andy and Simon know how to give that in droves. I wish you all were rested and refreshed each day but I pray and have faith that day will come.
Until then I only wish there were things I could do to make the time until that day easier.
Love you all.
Jen
Jane,
I wish I knew the answers too. Reading the responses to your posts from your support group has also helped me as I tackle some of the same thoughs and emotions that you describe. I will be reading and hoping to gain something from their answers as well. It sounds like your family is so loved and that Ramona has more people than she will probably ever know pryaing for her. All I know is that I too had hoped for the ‘perfect’ baby and I too got a broken, sick baby. But with that said, I would not trade him in for a Jack with a perfect heart because I feel that for whatever reason God intended him to be this way. I have to believe that He has big plans for these babies.
Ramona looks so fantastic and happy. Her color is great and you would never know that she just had open heart surgery. I laughed when I saw her in the bumbo because it made me think of Jack in his while he was in the recovery stage sitting in his. I know you can’t lift Ramona under her arms so how do you get her out? We always dumped Jack out onto the floor. Kind of funny.
I will pray that you get your answers, Jane. You deserve them. I will also pray that you get some sleep and that Ramona continues to have a speedy recovery.
Kelly
Jane
I can not imagine how I would react or feel in a similar situation. You are doing the best you can, and even more.
I know for years I would cry every month when that dreaded Period would come. Dreaded because I had so much pain with it and dreaded because I wanted to have children like my sisters. But, God knew what was best, and I didn’t become a mother. I am so grateful to God for his blessings in my life, but also my dear sisters for being such wonderful mothers and sharing their childrenn with me.
I am amazed at you strength and wisdom. You are a wonderful mother. God knows best.
Love Aunt Ro
i don’t have much to say because your insight and thoughtfulness seem to hit the nail on the head (as per usual) but what keeps spinning into my own processing thoughts is “ramona is ramona is ramona”. she is the above picture pre-surgery and the bottom picture following surgery and the myriad lovely moments and smiles and cries and lessons and good times and rough times and giggles and gurgles in between. and she is beautiful always.
I don’t know pain from your vantage point. But I do know pain from the opposite vantage point. You know what I mean. My viewpoint is going to likely seem rather simplistic. But I feel that we “get what we get” and that the objective is to live and love as well as we can with what we’re given. Not to necessarily make sense of it in regards to what those around us were given.
My current goal is not to make sense of my life but to make the best of my life. I see you doing the same for yourselves and you children.
My advice to you is to do your best to not waste your time wishing for what never was. Because it surely is a waste. You and I and everyone knows that what “is” is incredible, regardless of the difficulty and struggle.
Jane, I have found myself thinking about this a lot since I heard you say some of it a couple weeks ago (before this last surgery). It just resonated with me so much when you said that you do not pray that her missing chromosomal information would be restored as you know some people do pray for Ramona and other kids with similar deletions. It just made so much sense to me. And I’m all about logic. My thought was, “Well that just isn’t going to happen, so why pray that?” The funny thing is, now that you have likened Ramona’s deletion with our own brokenness, I’m less sure.
Don’t I pray for healing for my own deepest brokenness? Don’t I see very little progress on a lot of my most deep rooted sin? Don’t I sometimes believe it will never happen? Don’t I keep on praying any way?
I don’t think it would change the essential me-ness of me to overcome these sins in my life. Or if it did, it would only be for the better.
So, I guess I don’t believe it will change Ramona’s essential Ramona-ness to be healed completely. I just wonder if that’s how God works.
Hi Jane, I think it is really ok to feel cynical and short changed at times instead of counting your blessings. You are only human…… although you do appear wonderwomanish at times!
Dear Jane…
thanks again, as always for sharing yourself and your family with all of us. You do not know how strong and vibrant a blessing you bring to me each time I read what you’ve written. I find that now, while I do pray for Ramona to healed completely…I also pray to be even half the blessing that she has brought to the world.
peace to you all this week
ang
Hey Jane,
This makes me think of your post about driving in your car and someone cuts you off, which sends you into a rage because “don’t they know how crazy your life is right now??” – but you realized that we don’t know what is going on in all those OTHER car bubbles that whiz by. Maybe they win the contest of hardest row to hoe. (I think about this one a lot).
In any case, I don’t know HOW you go through life without comparing your pain to others. Am I not counting my blessings ENOUGH? or Am I not getting ENOUGH credit for how crappy things are right now? I tend to feel that I’m lacking – either in spiritual strength or a fair deal of the cards. It would be nice (or easier at least) to lose that ruler against which we measure our lot to others. But that would mean living in a bubble (this is what I picture when I think of being isolated from society – Great Sand Dunes Nat’ Park, CO http://www.americansouthwest.net/colorado/great_sand_dunes/dunes2_l.html)
BUT to live in a bubble means missing out on all the good things that others give us – the “i’ve been theres”, “you can get through this”, “your baby IS beautiful”, “no you don’t have a muffin top in those jeans”, etc.
I have no conclusion. I’m not sure how to find the balance between praying for her healing and celebrating Ramona, just as she is. (Though that reminds me the best part about Bridget Jones – that she finds the guy who loves her, and he says, “just as she is”. And don’t we all melt because we want that?)
Here’s my conclusion Jane. It’s only June 07. Ramona is only 7 1/2 months old. You are NEW to this challenge – there’s no way you can have all the answers on how you should feel! If you feel one thing one day and a different thing the next, you are probably right on track. Right where you are supposed to be. I only wish that place offered snooze buttons so you could get more rest….
peace,
molly
Dear Jane–
I wouldn’t call you or Ramona broken…. just”separate” from the perfection of the divineness of God. Just as all of us humans here on Earth are. We may believe that some are more “removed” from that image than others, but it’s probably just a matter of an arbitrary scale that we have devised, for who is to say that Ramona’s imperfection is any better or worse than any other? Ramona just is who she is…a combination of characteristics that make her unique. Her genetic label may enable you to make certain predictions about her future behaviors, maybe not. It doesn’t make her broken. It will simply inspire her, like all the rest of us maybe to search for God, to try to get closer to God and His perfection, to know God more fully by engaging Him, to humble herself before Him, not in shame but in awe and to remember that we are never separate from His unending Love and Mercy. She is here for a glorious purpose which you and Andy have been gently and openly receiving and sharing generously with all of us so far. It has been physically and emotionally difficult for all of you. I have seen it first hand. God bless you and Andy and Simon and Ramona. You’re only human. All my love and devotion-Mom
“When Thompson hit seventy, he decided to change his lifestyle completely so that he could live longer. He went on a strict diet, he jogged, he swam and he took sunbaths. In just three months’ time, Thompson lost thirty pounds, reduced his waist by six inches and expanded his chest by five inches. Svelte and tan, he decided to top it all off with a sporty new haircut. Afterward, while stepping out of the barbershop, he was hit by a bus.
As he lay dying, he cried out, ‘God, how could you do this to me?’
And a voice from the heavens responded, ‘To tell you the truth, Thompson, I didn’t recognize you.'”
This joke came to mind today while I was thinking over Dina’s wise words about how, or whether, our brokenness defines us.
This one really has me stumped. I even refreshed my memory on Teleology, Aristotle’s theory that everything has a purpose or essence. So, I’ve been thinking about whether or not her deletion is essential or accidental to who she is. I’m always saying that Simon “was adopted”, instead of “he is adopted”. It’s accidental to who he is. Maybe Ramona’s diagnosis and illness is the same, in which case perhaps I should be praying for her total healing and restoration.
And this is all philosophical. I still have to live it every day. Which is why I should probably just lean on the Holy Spirit. That’s good, because Aristotle only makes sense to me about every five years, whereas the Holy Spirit is usually comes if you call.
Jane.
Jane,
Usually, as soon as I hit “submit,” I develop a serious case of poster’s remorse, but here goes anyway…
My son, Tate, has severe allergies to 20+ foods. To give you a picture without too many words, the child is 3 years old and has never had a pb&j sandwich, ice cream, pizza, a piece of cake, a cookie or a cracker, or even a piece of bread. He has never eaten at a restaurant or had any food not prepared by me or his father. We must carry his epipen and benadryl with us at all times. Last night, while eating dinner, his lips started to swell, and I thought, “Okay, can we just give him benadryl, or is this going to be a trip to the ER?“ I still don’t know what caused the reaction. I continue to pray for his complete healing but am also so thankful for who he is today. I know I’m his Mom, but he has to be one of the sweetest, most tender-hearted 3 year olds out there – though he definitely has his moments.
When praying for all of you before Ramona’s last surgery, I was hit by a couple of things:
1) I have compared out situation with Tate to yours with Ramona and have beat myself up for being so concerned about Tate when Ramona faces 5-7 open heart surgeries (just as you have compared yourself to parents with children who face even greater battles). What are allergies compared to that? Not too long ago, someone shared with me a wise statement that someone else shared with her: “Comparison leads only to pride or disappointment/discouragement.“ I think this is so true, and both of those results can separate us from God. It helps me to remind myself that God is in control and He has allowed any trials I might be facing to refine my faith. Although I don’t know you personally (I wish I did!), it appears to me that Ramona and Simon and … are really working together to strengthen and refine your faith. That process has also greatly blessed those of us who are privileged to read your words. And even though Tate’s allergies have turned our lives upside down in a lot of ways, I truly thank God for what He has done, especially in my life and my personal relationship with Him. Would I be spiritually where I am today if it weren’t for Tate and his allergies? I definitely think not. Does this mean that I am happy that Tate is an allergic child? Absolutely not! Do I still cry and get down about it? Sometimes, yes. Don’t let the fact other people seem to have it worse minimize the trials you are facing – beautifully, I might add. These trials are painfully real and heart wrenching and worthy of every emotion you have experienced and will experience. God knows how real your pain is and wants to share it with you. I have been reading a book about a different form of suffering, but I think the author’s words apply to many situations: “The best path [in facing suffering] is through the valley of the shadow of death. The crags of doubt and the valleys of despair often offer a proving ground of God that no other terrain can provide…. The journey involves bringing our wounded heart before God, a heart that is full of rage, overwhelmed with doubt, bloodied but unbroken, rebellious, stained, and lonely. It does not seem possible that anyone can handle, let alone embrace, our wounded and sinful heart. But the path involves the risk of putting into words the condition of our inner being and placing those words before God for His response. The Lord has promised He will not put out the smoldering flax or break the broken reed (Isaiah 42:3).” I like to hold onto these words from Peter too.
“In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith – of greater worth than gold, which perishes even though refined by fire – may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.” 1Peter 1:6-7
2) I think that because of Ramona’s diagnoses you are faced day in and day out with the preciousness and fragility of life. A lot of us, out of ignorance or denial or something else, do not often dwell on such things. We get caught up in the busyness of life and don‘t have time to stop and reflect and savor moments, but the truth is that none of us are guaranteed tomorrow. (Whitney and I talked a little bit about this last week right before Ramona‘s surgery.) It seems to me that this knowledge brings with it great heartache but hopefully great joy too.
Thank you again for allowing us to share this journey with you. Constantly praying for healing for Ramona and Tate and so looking forward to the inheritance Peter describes…
“Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade – kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time.”
(Oops – this is long. Praying I didn’t write anything stupid, ignorant or hurtful.)
Love in Christ,
April
Forgot something – of course. I thought Ramona looked great before her surgery, but the difference in the before and after pictures is amazing. She looks really wonderful!
First, about Ramona’s picture…she absolutely looks better now. Her coloring and her affect are much better in the second picture. I think as people we sometimes find ourselves thinking that the grass is greener on the other side.the irony in that is that the person on the other side is thinking the same thing.
Things are as they are because that’s how God intended them to be. In that same respect I think that with all her chromosones she just wouldn’t be the same Ramona. Just like if God had made my Alex a patient and quiet child, then he wouldn’t be him. He wouldn’t be that extremely inquisitive,stubborn and demanding little boy I love so much.
Not to take away from anything that you’re experiencing but, I just have to say that even without the metadone withdrawal, she might still be a crier. Ever since Alex was a baby,when he cries it makes your ears bleed. Now he’s 2 and learning to talk so he screams if he can’t verbalize what he wants until you figure it out. And he STILL wakes up at night.
Keep on doing what you’re doing. I see 2 gorgeous and happy children. I thought Simon’s smile brightened up a room but I don’t know there is something about Ramona’s eyes that just calls out to me.
Judy
Well said Jane;)
Hey, Sweet Pea…look at you. You are really something sitting in that chair, smiling and politely sticking out your tongue at the world. I want to see your sass and sa-sha when you are older…I am betting that will really be SOMETHING to behold!!
Jane,
I read this blog every morning, sometimes I can respond immediately for many reasons, and at times when you invite our thoughts, I need and want to digest your thoughts, questions, read some scripture, pray, mull my stuff over with God and see what develops in my heart and spirit. For me, I started thinking about a person’s story – God given beginning to end, whether in Christ or not. Then I thought about Joni Erickseon Tada, whom I was able to see speak during Founder’s week at Moody years ago. She had a profound impact on my faith. And I thought, what if God healed her today? Would that change who she is? Or, what if that diving accident she had at the age of 17 hadn’t left her a quadraplegic – would she be the same person today? Then our individual stories came to mind again. What was in my heart and mind was that Joni Tada would still be Joni Tada no matter what – her story would be different. If Ramona had not had this heart defect (by this world’s standards and language), she would still be Ramona Mae, her story would be different. For me, I understand that our brokenness, spiritual, emotional and physical has a part in shaping us, but it does not define us. God creates us all, and for me, His providence and sovereignty has determined my story long before the choices I do or do not make. Of course, for me, how I live my life has eternal consequences – but that’s a whole other discussion. But, for now, I see dimly, but will one day see fully and clearly. We are all born with an inherited sin nature-part of our brokenness. Again, my understanding, God determines for His own purposes, whether we remain in that state or are redeemed. For me, sorry long way around, Ramona Mae is God’s creation and gift. Whether she is physically healed or not, God has a story for her, specific and unique to her alone – ultimately for His glory. And that story will change and detour and evolve as she does, under the sovereignty of God. Whatever her story looks like, she will always be Ramona Mae to Him. What I pray most for her, is that she would know, even now, the loving presence of her heavenly Father, and in the midst of it all, He would spare her pain, and just keep drawing her closer and closer to the knowledge of Himself with every day. And I ask for a supernatural awareness of His presence for her.
Keeping you all in prayer.
With love,
Jackie
I think you hit it on the head when you say that you are both feeling like others have it better and that children are a blessing. After my miscarriage I kept looking at anyone with 2 or more kids as so lucky compared to me…why couldn’t I have it easy like them? But now that I’m farther removed from it, that seems so ridiculous. There are so many people that don’t have what each of us defines as the “perfect” life. For that matter, our definition seems to change depending on what we’re going through (since we take for granted most things we have). I am so thankful for the child I do have, and am trying to focus on soaking up every minute with him. When I do that, it’s hard to think of myself as less blessed than anyone else. Most of all, I would say to not beat yourself up about how you feel, it all sounds perfectly normal to me. I have never seen someone come through a trying time like you are. You’re doing great! And Ramona looks amazing!
Dear Jane and Andy:
Hello, I hope that this note finds you well.
I think the photos really show how your daughter is healing. It may be a slow journey, but the evidence is there.
As many have mentioned, I don’t have the answers, but I believe that we are all designed as incomplete and that we need God in the form of the people we are surrounded by in our lifetime (be it family, friends, acquaintances, etc.) to fully become who we are destined to be based on His plan for each of us.
May every moment continue to be a loving, learning, growing experience for everyone in the family (even through the difficult periods).
We’ve never met, but your family is always in my thoughts and prayers.
Keep smiling and God bless!
Look! No oxygen! And I’m not even purple! How exciting…
I just have to add that I wish chubby looked as good on me as it does on Sweet Ramona! She’s adorable.
dear jane,
i sit here, now years from your experience…or do i? brokeness comes in all kinds of packages…i think the worst is the kind you can not see…the kind you can not take to the hospital…the kind of pain that is born of an inner sickness..i can not fix those i love anymore than you can fix yours and it tears at my heart every day….every single day..and i want to ask HIM…just what is it you want from me…if i cry harder, beg more, believe past believing, will you bend your ear this time…and the thing that really slays me is i really believe in the BIG Miracle…the one that will turn heads and hearts…I do…I do…
I don’t have any easy answers for you Jane..or for myself….but if I had to choose to keep believing or to cash it in for bitterness and despair…well, i would choose to believe…even whlie I wait to see the promise of HIS love made real..because I NEED something to hold on to….
hang in there kids…you are in my thoughts and prayers..
love,
a jackie
I’m catching up on the oh-so-gorgeous Ramona Mae happenings after my own sojourn to the land of no internet. Your post reminded me of a slightly hokey, but still truthful, story/fable I recently read:
An elderly Chinese woman had two large pots, each hung on the ends of a pole, which she carried across her neck. One of the had a crack in it while the other pot was perfect and always delivered a full portion of water, while the cracked pot arrived half full.
For a full two years this went on daily, with the woman bringing home 1.5 pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection and miserable that it could only do half of what it had been made to do.
One day the pot spoke to the woman: “I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.”
The old woman smiled, “Did you notice that there are flowers on your side of the path, but not the other? That’s because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them. For two years, I have had flowers to decorate my table and beautify my life.”
“Without you being just the way you are, there would not be this beauty to grace our house.”
Each of us has our own unique flaw (or many flaws). You have to take each person for what they are and find the joy and the good in what they offer.
I know it doesn’t resolve the debate of the day, or stop the what if’s from swirling through your head, but I think of Ramona as an amazing part of the patchwork of life. She’s just a bitty baby, but has brought out so much good and love.
I’m praying for you and for some peace and wisdom on this crazy journey you’re on.
Much love-
Amie