One Month Home
Today Little Man has been home for one whole month! I can’t believe how fast the time flew by! In some ways, I feel like we just got back, but in other ways, I feel like he has been here for years.
Little Man is losing his “orphanage” look. He looks much more relaxed around us and our routines, and he seems to be comprehending that Daddy will come home each night, and there will always be food whenever he wants it. A routine is definitely important to him, as I’m sure there were not many days in the orphanage that did not have a very strict schedule. We can tell he is definitely on “high alert” if we are in a “new” place with “new” people. He is starting to get more relaxed at church, which is great, because we spend a good bit of time there each week. When I mention the word “church,” he immediately starts yelling his friends’ names. “E!” “J!” It is very funny and also exciting to see that he is relating faces and names, and he associates both with being happy.
He is learning a lot of new words. He will repeat anything we ask him to, but he is starting to say English words without being prompted. A few things off the top of my head that he says on his own are, “hello”, “bye-bye”, “mommy”, “daddy”, “BabyGirl”, ” ‘caroni” (macaroni), “yummy”, “chicken”, “yucky”, “diaper”, “night-night”, “belly”, “nose”, and a few others I’m sure I’m forgetting. He knows all the names of our immediate family (aunts, uncles, grandparents, etc.), and a few of our close friends that he has started to see regularly.
He LOVES to give and receive affection, which we learned in our training could be very difficult for some newly adopted children. He wants to be held, cuddled, tickled and kissed all the time. In fact, some of our sweetest moments so far have been at church. During the adoption process, I would sit in our usual pew at church and long for the Sunday that he would be in our arms to sing with us. I can remember, on several occasions, being moved almost to tears at the realization that he was on the other side of the world, but several times God whispered that I would hold him in that very spot as we all worshipped together. So now, we stand in our usual spot and hear the same songs that spoke of God’s faithfulness, songs that held us together as we clung to His promise that He would set the lonely in families. We stand on the same spot of carpet, by the same chairs, singing the same songs, but now, I hold in my arms God’s faithfulness. I get to literally cradle His promise to us. It is overwhelming to stand there, with Little Man in my arms, singing of His faithfulness, while Little Man puts his tiny hands on my face and tries to sneak in kisses.
The Lord has been so faithful to fulfill His promises to us, we can’t help but rejoice at His love.
As we get to know Little Man better (which has been a fun journey- it is very different from a newborn who doesn’t already have years of experiences and preferences and likes and dislikes), we see more and more of his physical conditions. We are seeing challenges just related to being in the orphanage for so long that make every day life different for us. For example, he does not know how to chew. We have managed to teach him how to move his jaw, but it is difficult to explain to a 3 year old with minimal language understanding how to use your teeth to grind food. So choking is something we have to watch for very carefully. He wants to eat solid foods like his sister, so we allow it, but it is something we have to be very careful about since he swallows everything whole. (Of course, we do give him as much pureed food as he will take, but mostly he wants solids- especially macaroni!)
We have been very open with explaining to people that Little Man was born with conditions called spina bifida and hydrocephaly. If you don’t know what that is, or to help the next few paragraphs make sense, here are two quick explanations:
Today has been a little more difficult for me than any of the other days so far, I think because tomorrow will be his first specialist doctor’s appointment. Up until now, we haven’t had to accept what a specialist has to say about his potential to walk, but tomorrow, I know that is coming. Honestly, I don’t know if I am ready to hear the truth. I was venting to a friend last night and said that most pregnant mothers, if told something would be “wrong” with their babies would spend the next months praying and anxious to prove the doctors wrong at the babies’ births. For me, the adoption was the same. I have spent so much time begging God to heal Little Man’s legs, and I had no reason to believe He wouldn’t. Don’t get me wrong, of course we looked at his file intently and decided over a year ago, that regardless of whether God would heal him or not, he was absolutely our son and we would love him no matter what his level of functioning would be. As I have prayed over the past year, I knew that God may choose to not heal him, and I have accepted that.
BUT all that being said, when we finally got to spend hours, days, and weeks with our child, the reality of his disabilities became much more evident and real. (If that makes any sense at all.) It is becoming easier to see, to some extent, what is related to delay from the orphanage and what is a physical issue.
From what we can tell, he has no feeling below his knees. He does have a small reflex in each knee, but neither foot. His little knees and ankles are contracted from years of not being used and worked with. His knees do have some movement, they just don’t straighten completely. His feet have almost no movement though. All of that means that he has no control of his muscles below his knees, so he can’t move his lower legs or feet on his own, but even when I move his knees or ankles, they do not have the full range of motion that an average, healthy person has.
None of those things stop him from wanting to try everything his sister does, but it does sting my mama’s heart to know that, currently, this is his reality.
We were at a church event this weekend that had bouncy houses. He pointed to them after watching Baby Girl jump for some time. I know he wanted to get in, but at that point, there were too many kids, most much older than him, and he would have been hurt. I walked away with him to find something else to do, secretly wondering if he would ever jump in one.
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I know that all of this may sound ridiculous to many people. I’m sure many are thinking, “Well, you signed up for this!” “There is no reason this should be difficult because you walked into this journey with your eyes wide open.”
And all of that is true.
We did “sign up for this”, in the sense that we chose Little Man, specifically. We didn’t just accept someone’s recommendation of him. We specifically sought him out.
We did walk into this with our eyes wide open. We had access to every bit of his medical information before signing that we wanted to pursue him.
But none of that excludes us from the grieving process as we begin a new medical journey with him. Now, he is MY son. My little boy. And I never want to see him suffer. I don’t want him to have to undergo the tests and scans that are scheduled for this week. I don’t want him to have the future surgeries we know will happen. I don’t want him to have to pull himself across the floor with his arms. I want him to walk. I want him to run and play. I want him to jump in every bouncy house he sees.
It is an odd place to be, this balance between falling deeply in love with your child, and still grieving the medical difficulties you see for the future. I certainly didn’t expect these emotions. I also thought I had come to terms with all of the emotions related to having a son that will have physical challenges. But now that he is home, it is real. And the grief is a part of that.
Please don’t misunderstand. I wouldn’t do anything differently. Little Man has been our son since we first saw his picture, and in our hearts, even longer. We love him as much as we love our biological Baby Girl, just as if he had been born to us. But it is difficult to not be a little sad wondering what his future will look like in terms of mobility.
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Thankfully, I know that the same Sovereign God who provided a way for Little Man to come home, is the same One who sees his every need. We serve a mighty God, who is ALWAYS victorious. He is victorious in life, and victorious in death. So we know that He alone has the victory in everything between.
I have hope in the risen Savior. And I know that this Savior takes great delight in telling the lame to take up his mat and walk.
I also know that this Savior sits on His holy throne, regardless of whether He chooses to heal or not.
Therefore, I know the victory is His.
The victory will be His in a wheelchair. Or the victory will be His in a bouncy house.
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So as we begin the medical phase of this journey as a family, I ask that you continue to keep us in your prayers. I ask that you pray for Little Man’s heart to be calm and trusting of us (which is a lot to ask so soon after coming home) as he is put to sleep for various tests. I ask that you pray for our hearts to cling to the hope that is in Christ Jesus alone, not in a doctor’s opinion. I ask that if this week we weep because science and biology say the odds are against us, you remind us that the victory is already won.
