More than I could bear

June 7, 2014 by Amy Amy, esophageal stenosis, scoliosis, Tetrology of Fallot, tracheo-malacia, tracheoesophagel fistula, VACTERL 5 Comments

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Sometimes I forget that we have a child who is a “heart baby”, a lifelong cardiac patient, a survivor. I see her scars everyday. Scars from a surgery I wasn’t present for, scars from one I was; and, I have come to love what they represent. They are a daily reminder of healing, a unique tattoo of her miraculous-ness, and evidence that she is a living breathing answer to prayer – to many prayers. She was ours for only a month without her scar from heart surgery and I actually don’t remember what her chest looked like without it. Those early days of jetlag and adjusting with a new child with multiple health concerns are such foggy memories to me now. Once Gotcha day happened we kicked into survival mode and camped there for those few short weeks between returning home, heart surgery and returning home again to discover our “new normal”.

This month marks a year since we had the first visits with the cardiologist, the echocardiogram, got the call saying when surgery would be, and prepared as best we could for those days of repair and recovery. I’ve come to believe that God must carry us through hard things in such a delicate way so that He protects us from absorbing the magnitude of the scariest things we endure. He provides us the strength to survive it, like manna from heaven, enough for the exact moment we need it. Not a moment late, He brings strength and the peace that passes understanding. Apart from that core belief, I don’t know how we each survived those first 8 weeks with Grace, or the months prior, praying that she would hang on until we could bring her home.

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I prayed many times that God would open doors for Grace to have surgery in China so that she could recover with the New Day family that she knew instead of us – the family that would feel like strangers. I was afraid we wouldn’t get to her in time because she was deteriorating. I didn’t want to travel throughout China with a cyanotic and medically fragile baby, never-mind the 14 hour flight home not how the in-flight altitude would affect her. Truth be told, I didn’t want to have to say good-bye and kiss her one last time before watching them carry her off to crack her chest. I didn’t want to endure excruciating hours in the waiting room. I didn’t want to suffer like that. My one comfort while we waited to meet Grace, was that perhaps I could only love her “so much” so that it wouldn’t be “so hard” to let her go.

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Those first hours into Gotcha Day wrecked that theory. It was obliterated, actually, and once she was in my arms, I knew for sure that there was no going back. There would be no threshold of protection for my heart, no holding back from loving her fully until surgery was complete. There would be no robotic Mama who could go through the motions until it was safe for me to love her. The things we survived as a family, I believe, were deliberate answers to prayers we had prayed long before Gotcha day. They were answers to prayers birthed from questions that every adoptive parent wonders one time or another: “What if I don’t feel the love for this child as much as I should…What if I do, but she doesn’t love me back?”

How deeply we loved her even before we laid eyes on her produced just enough instinct to protect her, to fight for her, and to battle airlines for oxygen for her. How much we loved her generated just enough patience and compassion to weather the challenging moments when she grieved or felt awful but couldn’t communicate it – so she hit us instead. How securely she became a part of me was necessary so that through the very hardest moments of saying good-bye before surgery, and blowing tear-filled kisses until she disappeared through the double doors – I could feel my heart aching affirming over and over again that she.is.my.daughter. After only 31 days home, we loved her so deeply, so fiercely, and so completely it was as if throughout the trials, the hard moments, the scary moments – We made up for 19 months of lost time. It is as if she has always been ours.

I believe only God weaves hearts together like that, and for some it may take weeks or months. For me, I believe, He knew it had to happen in a hurry. He knew that Grace didn’t need a stranger or an arm’s length Mama with her in the hospital. She didn’t deserve a woman holding back on loving her until she was well. She needed her Mother. She needed all of me.

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Open heart surgery is common. It happens in most every hospital, most every day. It happens to both the newborn and the elderly. When it happened to my child, though, it was an extraordinary kind of restlessness mixed with relief. It simultaneously felt as though my skin was crawling, and that I was about to reach a finish line all at once. Grace had a substantial VSD (ventricular septal defect). There was an opening between her ventricles which allowed oxygenated and un-oxygenated blood to mix before heading out through her body. This caused her poor oxygen saturation and for her a normal day had her sitting in the 70’s. You and I are probably around 99% most days. Her tiny body adapted well and she lived almost 18 months without daily TET spells. These TET spells would be moments, just about every morning, where her oxygen stats would drop and she would lean a little to the right, her eyes would roll back a little, her eyelids would close a bit and she would cry. There was no comforting her. Her knees instinctively retracted to her chest and I would hold her on her side. After a few minutes it would pass. On the day before her surgery we celebrated the passing of her very last TET spell. It seemed strange to celebrate once it was finally time for surgery. I alternated between feeling grateful it was happening, and terrified from knowing too much about the risks. When you have tetralogy of fallot there isn’t a choice. Surgery saves your life.

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On the eve of surgery day, it weighed heavy what an honor and privilege it was to be with her for surgery. It nearly happened while she was in China without us, but the doctors said it was “too risky” and refused to operate. Once here in the US for two weeks, surgery was scheduled. It was happening and I got to be her person. I got to experience her healing alongside her and not just read about it in a report. As I rocked her to sleep that last night before surgery, I sang “Healer” by Kari Jobe, as I had many times before. It was more like blubbering than singing and some of the words weren’t more than a squeak. I remembered in those moments how I had once prayed, before we traveled to China, that God would just let me hold her and tell her how much we love her so that she would know she had a Mama and a Daddy and a Sister and Brother who loved her. All of the things from the travel drama, to TET spells and tests were necessary trials and each one of them shaped me into her Mama on a deeper and deeper level. It was as if her having surgery here fostered a faster attachment, a faster bonding of her to us and us to her. The morning we said good-bye to her we took our time. We sang, we played, we told her that we loved her and kissed her 1000 times. Grace’s Daddy and I waved and said “see you soon” and we held back our heavy tears until she was gone from our sight. Once she was through the doors we collapsed into each other’s arms and bawled our eyes out.

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Once the we learned the surgery was over, her heart was beating again on it’s own after bypass, and her oxygen saturation was in the upper 90’s it felt like everything in me exhaled after a long day of holding my breath, and many weeks of praying for that moment. Seeing her pink fingers, toes, and lips after a month of bluish gray fingers, toes, and lips is something I will never forget. The transformation in 8 hours was life changing, for all of us. I wouldn’t have missed it for anything in the world, and yet…

many times prior I begged God to let it happen without me. Many times I asked Him, “Why?” Why are you closing the door to this? Why aren’t you healing her in China so that we can bring her home well? Why are you slow in bringing about her healing, Lord?”

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I now know it was a blessing. I would have it no other way. It provided me a unique opportunity to grow and become the mother she needed to survive and recover and thrive. More importantly, it provided many opportunities for her to see me be there for her during the time when she was most needy. God knew I needed to experience her transformation with her, and He knew I needed to have some transformation myself. For the 10 days Grace was hospitalized I was there 10 days. I was there when she declined and her lungs filled with fluid. I was there when she had not one, but two weird allergic reactions and had to convince the doctors that, yes, it really was an allergic reaction and they needed to take action (glory to God). I was there singing over her and praying over her and massaging her abdomen to help try to avoid being re-catheterized (ahem). I was there to advocate on her behalf for pain meds (the kind that work), and lay next to her smooshed in a tiny hospital bed because it seemed to matter to her that I was as close as could be. I was there to diagnose thrush (seriously). I was there with her as her mother – but I had once prayed to not be there. I would have missed out on so much.

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My point in telling you this is to highlight the very real truth that sometimes we do not get that which we pray hardest for, because it won’t produce that which we need most. We pray for our children to be healthy, or at the very least, have the needs we expect based on our referral information. Of course we pray for that – everyone does! Everyone hopes for a healthy child. For example, how about the classic line before an ultra-sound: “boy or girl, it doesn’t matter as long as they’re healthy. Except it doesn’t always work out that way. Ultrasounds don’t show everything, and neither do referral papers. Many a child has been revealed to have more needs than what was shown on their referral documents – my child had several more.

And yet, nothing that surprises us surprises God. What a comfort that is to me daily, because the truth is that God does allow more than we can handle. We like to believe that God says in scripture, that He won’t give us more than we can handle. It says in Scripture that He won’t allow us to be tempted more than we can bear (1 Corinthians 10:13); but I promise you, He often allows into our lives more than we can handle because if we could “handle” all that comes our way – we wouldn’t need Him very much – would we? (Psalm 68:19). He promises to never leave or forsake us. In the moments when it is too much for me to bear alone, those are the moments when I have no choice but to press into Him and rely on His faithfulness and His strength. I am chronically carried away by waves of fear – but when I look back I so clearly see His providence, His grace, His wisdom, His presence, and His promises fulfilled. There is truly very little I can handle without Him. The truth is that we can only handle the hard things of this life, and become better instead of bitter, because He provides the strength when we need it. He provided it for me, He will provide it for you, too. If He leads you on this journey of adoption you can trust that He will guide you to the child He already knows is your child; and in the moments when it is more than you think you can handle alone, He will carry you through. You can even give it to Him because He does promise to carry us (Isaiah 46:3-4).

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I didn’t want to endure open heart surgery with my daughter. I wanted to travel to China and bring home a healed, well, easy child. Perhaps you do too. Let me encourage you that sometimes the very best stories aren’t born from words like: healed, well, easy, or normal. Maybe you are waiting for a referral and hoping for something “easy and repaired”, like I did. Maybe you have your referral and you are waiting to find out an update, hoping that everything in the oh-so-outdated file is “better now” or “fixed”. Maybe you’ve just returned home with a child you expected to have a minor correctable need, only to be surprised with a diagnosis which includes surgeries, procedures, medicines; and now, the picture of what you thought your life would be has been shattered. Whatever your story, you are not alone and if you let Him, God will weave a redemptive story from the seemingly “unanswered” prayers.

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Nothing about adoption is easy. Nothing about parenting a child with special needs, medical needs or attachment needs is easy, and most days it’s the attachment needs that scream (quite literally) the loudest. If you, like I and many others before you, are here educating yourself about a variety of needs so that you can navigate your adoption paperwork, a referral, or a new diagnosis; let me encourage you:I knew as much as I needed to know at the time, to say “I will” to our daughter. I’m grateful I didn’t know about all of the things on referral day because, like everyone, I have moments of cowardice and I fear and I could have easily been scared out of one of the most profound blessings of my entire life. Adopting a precious little girl has been a blessing; but even more was growing to know Her creator on a deeper level and trusting His heart and faithfulness in a way I could not have unless He allowed more into my life than I can bear alone.

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“He tends His flock like a shepherd; He gathers His lambs in His arms and carries them close to His heart; He gently leads those that have young”
— Isaiah 40:11

 

 



5 Responses to “More than I could bear”

  1. Yvonne Macfadyen says:

    God bless your family!

  2. Christy says:

    Your story is so similar to ours. We adopted our daughter Lily from China in March 2012 at age 11 months. We were told she had VSD in her referral. When we got to the states, we found ute she had Tetralogy of Fallot. She had surgery to repair the TOF in May 2012 and has done well. Our trip home from China was painful with her crying the majority of the flight from lack of oxygen. Had we know the seriousness of her condition we could have been more prepared. Your daughter is beautiful and I wish you and your family all the best.

  3. What a beautifully written post. Thank you so much for sharing Truth! I could relate SO much to everything you said…you have encouraged me this morning!
    Blessings!
    Laine, a heart mama too!

  4. Larry says:

    The blog asked me to tell you what I think. I think you are wonderful.

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