Jupiter’s journey continues

Lately, despite all my intentions, I’ve been a hairsbreadth from despair. Winter, the holidays (while wonderful this year, still always difficult without my father, though he’s fourteen years gone), illness, financial stress—all have lately taken their toll. I wanted to believe in miracles, and over the past several years I’ve been fortunate to witness so many. But sometimes the darkness closes in. Sometimes, it’s hard to hope in the midst of it all.

I’ve talked about the journey to adopt my son in previous posts. But I haven’t talked as much about what has followed, that time we adoptive families call “after the airplane.” After the airplane is often an emotional journey, as children struggle to grasp their new reality. It certainly was the case with my daughter. With others, there’s also a medical component, as families adjust to their child’s special needs, some of which may not have been presented to them prior to adoption.

Some families feel that the story of their child’s medical history isn’t theirs to tell. I feel that when community becomes intertwined, then sometimes those stories can be used for good–for the child, further education of the community, and for helping other families and children facing similar issues feel less isolated. (I respect differing opinions on this, of course. To each family their own).

We agreed to this adoption knowing our son had spina bifida. We knew some of the potential complications that might arise, and we were prepared (or thought we were) to deal with them. From the way it was presented to us, though, our son’s spina bifida had largely been treated during surgery when he was 5 months old. A possible residual effect was a slightly awkward gait, which was presented as having orthopedic rather than neurological origins.

None of that mattered to us. I just couldn’t bear the thought of how long that child sat on the list waiting for a family to take a chance on him. I’m so glad we were the ones who were allowed to take that chance. He is one of the funniest, sweetest children I’ve ever met. His imagination is something I’ve rarely seen in a child that age. Just weeks into being with us he told elaborate stories, half in Chinese, half in what little English he knew, and with many emphatic gestures and singing. I’ve never known love from a child like this—absolutely unconditionally from the first day, down to the very scent of me, asking to smell me just because it was the most comforting thing he had ever known.

Last July, Jupiter had a routine MRI. I had expected at least one thing to be wrong and was fully prepared from the beginning that he might need surgery. But the rarity of his form of spina bifida meant that he had at least 4 or 5 things wrong. Essentially, he is missing most of the lower bones of his spine, which caused a split cord malformation (spina bifida—split spine). In his case, fluid has collected around the two ends of the cord, which are tethered in various places to fibrous tissue. All of this is surrounded by a large, fatty mass which is putting pressure on the cords, and will continue to do so as he grows.

If nothing is done, the IMG_0171pressure and stretching on the cords will lead to a slow but irreversible loss of nerve function. Had he remained in China, had we not gotten this MRI, it is likely he would slowly have lost the ability to walk, to use the bathroom independently, and all the function he has managed to gain in his short life. (The fact that he does so much so well—that he can dance, run, walk, jump—is nothing short of miraculous).

We decided after much research and discussion to take our case to Boston Children’s Hospital because the specialists there are the top surgeons in the country for our son’s medical needs. We could do no less for this child; he deserves the absolute best we can give after all he’s suffered. We’d decided this and knew that we would need to get surgery within the year before function started dropping off. A couple weekends ago, as Jupiter chased his sister down a hallway, his legs inexplicably buckled and he fell flat on his face. I knew then that we were racing against time. When Boston came back to us last Monday and said, “Can you be here on February 8?”, I had no idea how we would make it work, but I knew we had to find a way.

I didn’t know where I’d find accommodations, but a charity came through and offered us housing. I wasn’t sure how we would afford transportation at such a late date, but another charity has offered us a medical flight. Along every step of the way, just when things seem impossible, we are offered another miracle for our miracle child.

I am so very thankful to all who have made this possible—from the community who helped us adopt him when the way became hard, to those who have helped us since we’ve been home—our pediatrician, our orthopedic specialists, our physical therapist, our  orthotist, our pediatric neurosurgeon, the staff at Boston Children’s, our family, our dear friends. It truly has taken a village with this child, and we are deeply, deeply grateful.

For me, though, this goes deeper than gratitude. In a time when so many of us are filled with doubt, in a time when so many are experiencing the repercussions of America’s increasingly ugly political scene, it is so very heartening to know that there are some people who will still open their homes to a stranger, some people who will still lend a hand to a child in need.

All that being said, I do not just want to be a beneficiary of other people’s goodness. I want to find more ways to give back. Some people have called me a saint for adopting my children, but it’s not saintly—it’s just people in need finding each other.

Sometimes we’re so blinded by our own situations, feel so hopelessly defeated that we don’t know where to begin to help others. I’ve felt that way since July, really, faced with yet another seemingly impossible mountain to climb.

Soon, I hope, that climb will be over, but I know we’ve not done this alone. I want to be there for someone else.  IMG_0020One of my missions this year, I think, is to find a way to give back. Stay tuned for more info on how that will happen. And watch this space for updates as Jupiter’s journey continues…

 

 

 

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  1. Edie

    Beautiful post. With you. With Jupiter. All the way.

  2. tiffanytrent

    Thank you, Edie! <3 <3

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