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Her Kidneys Can’t Heal But Her Heart Can
Cassie had a long conversation with Jasmine the other day about Jessica’s hospitalization. Jasmine told Cassie that she believes God knew that Jessica needed more time with just Dan and I. Jessica needed to know she could trust us and that we would be by her side through it all. Jessica needed to be held and to be comforted. She needed to know that she would never be alone in the hospital again.
We can all see God’s hand in this.
- The way Dan and Ben knew that Liam was to be our son.
- How things worked out so files could be transferred and we could add Liam without slowing down our adoption process.
- How our travel plans worked out so that we had to meet Liam first. Liam was so good for her. Jessica was completely shut down and refuses to talk to adults, but she loves Liam. The laughter they shared together was so beautiful. They would play and play. It brought such joy to our hearts to watch her just be a little girl.
- When she didn’t get sick while we were in China.
- When she had a couple of days at home, before her hospitalization, with Gracie and Elyse to feel safe.
- When they allowed us to add her on to Grace’s appointment with nephrology so she could be seen right away.
- When the timing allowed her to be hospitalized over Spring Break so Cassie and Reece were home for Liam to feel safe.
- When we were admitted with nurses who had already taken care of Jasmine and understood how to care for a child of trauma and were so kind with Jessica.
There are so many little things that we can see God’s hand in. If we pay attention and if we give credit where it is due, then we can see miracles in delays and hospitalizations. We can see how the bad can ultimately lead to good. Many of us have taken the verse “All things work together for good” to mean that all things are good, but that isn’t the truth. This verse means God can take the worst situation and use it for good. It does not mean that if we believe, everything in our lives will be good.
We saw it with Jasmine’s wound infection and her subsequent 30 day hospital stay. We saw something horrible lead to great healing for her. It was hard at the time to understand why a child who had been through so much had to endure so much more pain, but a year later we see the healing it brought to Jasmine. (Blog) We understand that although this hospitalization isn’t ideal, it can lead to healing and trust for Jessica too.
We now know that her kidney disease can not be reversed. We know that she will at some point need a transplant and dialysis. The good news is her kidney function has improved from 15% -which means dialysis now, to 22%, which means we can wait and watch her closely for now. It could be months or even years before she needs dialysis. This is a gift. I can’t imagine starting dialysis right away. We would have done it, but it’s nice to have a buffer of time to bond and for her to feel more secure.
Her MRI and CAT scan showed many different spinal defects. It’s complicated and no one can really give us any concrete answers. Dan believes it falls in the spectrum of caudal regression syndrome. Genetics is involved and I’m sure we will learn more as time goes on. Her spinal cord ends at T8, she has severe “s” type scoliosis, there are numerous butterfly and hemi-vertebrae, she is missing ribs, and some ribs are fused, she has grade 4 vesicoureteral reflux of her right kidney. It’s complicated and we aren’t sure what, if anything, can be done to help her spine.
The good news? Her heart is healthy and she is smart as a whip. She has full use of her arms and hands. She has a family that adores her and she will never go through anything alone again.
The unbelievable news? That the adoption process moved quickly enough that we got to her before she had this last infection. When her charts were looked over by our urologist, he said, “She’s one bad kidney infection (urosepsis) away from passing away.” That’s pretty scary. But she got sick in the US where we could treat her aggressively and get her all of the specialized care she needed.
The praise God news? Had she stayed in China and had this infection she may not have survived. If she had survived, the infection could have accelerated her kidney failure to the point that she would have died without dialysis (she would not have been offered dialysis in the orphanage). If we had not been granted an “expedite” on her adoption – we may never had made to her in time. God provided.
The great news? We can help her heart heal. Her sweet personality shines through. We have seen her slowly start to trust. She reaches out for us. She shyly smiles and doesn’t shake her head no when we say “I love you”. She still doesn’t really talk to any adults, but she’s figured out how to ask for what she needs with signs and pointing. She’s asked to be held. She lets us tuck her in. She allows us to hold her hand and stroke her hair. She reaches out for me when she is sleeping. She will ask me for help.
This is huge from where we were in China where she hung her head and wouldn’t look anyone in the eye. Knowing what I know from Jasmine and Elyse, I know she was told she was worthless. I can see it on her face. I see it with the way she hangs her head. How she refuses to look in a mirror. How she shakes her head no over and over again if you say she is pretty.
She has come along way since her admission last week. The look on her face just melts my heart. Sometimes she forgets that she doesn’t trust. Sometimes just for a few minutes you see her truly feel the joy of being loved. She soaks it in. She wants it so much. Someday she won’t instantly throw those guards back up. Someday she will know she is safe and loved. Someday she will know we can be trusted with the great gift of her love.
As Dan jokes – “Resistance is futile, you will be assimilated. We are the Ellsburys”… yes a bit of Star Trek humor. We are a bit tired.
Someday our sweet girl will know her worth. Someday she will know she is cherished. She will understand the peace that comes when bathed in unconditional love. Someday she will play and laugh and dance in her wheelchair and just be a little girl.
Someday…
