Little Man's birthday has come and gone. He was thrilled and confused at just how much celebration there was in honor of his life. He could not believe the stack of presents that his friends brought were just for him. It was great to see him so happy and surrounded by people that have loved him almost as long as we have.
A few days later, Little Man received his first wheelchair. Words cannot express how much that chair has changed his life. He has been able to be almost completely independent for the first time in his entire life. His face beamed for the whole first week he had it. It also offered him dignity that he has not had up until now. Instead of scooting around at people's feet, he is now eye-level with his peers and able to go where he pleases. We are incredibly thankful that he is finally strong enough to be able to have a wheelchair that he can maneuver on his own and the difference it has made for him.
Those are some of the things we have been up to since I posted last. Unfortunately, Little Man's weight has not improved, and so we are in a position that having a feeding tube surgically placed is our only option at this point. Seeing the diagnosis "failure to thrive" has been very difficult for me. I saw it frequently on patient charts in nursing school, but now having tried our absolute best for the past year to get him to gain weight, and know that we have still failed in that mission is incredibly disheartening. In many ways, it has been a very silent struggle in our home.
While Little Man looks very "normal" from the outside, only those who are intimately involved in our lives really know the whole story. The emotional scars of adoption and all of the trauma associated with the past manifest themselves in different ways in different children. For Little Man, a part of his daily life is extreme anxiety. It is not something an average person would recognize. In fact, most adoption specialists say that it is not even recognizable to people who frequently interact with adopted kids- it takes a trained eye or someone who lives with the child. We are forever thankful for the close friends and family who have rallied around us in the past year and have been a source of refuge for us as we learn to navigate these tumultuous waters, for while they don't always see firsthand the daily effects, they do believe our crazy stories and actively seek to support and comfort us. In our eyes, they are angels in human flesh.
While anxiety is not the only daily hurdle we tackle, we feel that it is best to limit our discussions about our struggles with a select few in order to protect Little Man's dignity. I think most parents would agree that posting things about their child that seem cute or even naughty for the world to see is not in the child's best future interest. (Think how it would feel to know there are potty training pictures of yourself floating around on the internet, or stories written about every naughty thing you did as a child! Yikes!) This is true for Little Man, except at an even more extreme level. Our struggles as parents are not ours to broadcast because they are not just our struggles- they are his too. Our hope is that as an adult, Little Man will be able to read these stories and know that we told the truth of our lives, while maintaining his privacy and dignity.
Anxiety is certainly not the only thing we are navigating on a daily basis, but possibly the easiest way to combine all of the issues into an easily recognizable word. I joked with my parents last night that I had NO idea what being a special needs parent actually meant a year ago. I remember thinking when Baby Girl was an infant that her severe acid reflux and insanely fast teething (seriously- 11 teeth by her first birthday!) was a difficult hurdle- now I laugh at that person I was. I had no idea just how complicated it is to juggle multiple doctor appointments every single week, much less keeping all of those different therapists, doctors, and specialists on the same page. God has truly blessed us with a core group of friends that have helped us keep our sanity as we were thrown into this crazy world of special needs adoption! It is an amazing view when we step back and survey our life around us. I believe we have truly experienced what Christ wanted for His body- a group of people who love each other more than themselves and are willing to lay down their own lives and comfort to support each other. On the days that I am too tired and emotionally exhausted to even pray for our own situation, I know there are people who are storming the Throne Room on our behalf. It is a very humbling experience.
I don't say all of those things to say that life is all doom and gloom. The opposite is quite true! There are pizza picnics and movie nights in the living room, play time with friends, weekly special Saturday breakfasts as a family, trips to visit family, ballet class, Sunday night dinners with special friends, and all sorts of fun adventures each week. (I had to think really hard to be able to list some that don't revolve around food! Ha! If our family is involved, it is likely that there is good food there too!) While special needs certainly affect every single aspect of our lives, it simply adds extra steps to each activity, it does not in any way remove the joy of life. Even now knowing that Little Man's needs are far more extensive than anyone could have predicted a year and a half ago, we'd still fight to bring him home all the same if we had to do it again. We appreciate the good days so much more now that we have trekked through the low valleys!
This week will present new challenges for our family as Little Man will be undergoing surgery to have a feeding tube placed in his stomach on Thursday. We are hoping the surgeon will also be able to do the planned procedure that will help prevent Little Man from suffering from reflux and intentional vomiting. Unfortunately, all of the trauma of his past causes him to refuse many meals, has prevented him from eating an acceptable amount when he does eat, and even when he does, he often has so much anxiety that he vomits it all up. This has become an insurmountable problem because he was already so severely underweight when we picked him up from the orphanage. In his year home, despite our very best efforts, we have only been able to get him to gain 2 pounds. At just over 4 years old, he weighs only 21 pounds. We have tried everything else imaginable, and now all of our medical specialists agree that this is our only option. This feeding tube will allow us to feed him throughout the day, in addition to what he will consume orally, as well as hook him up to a pump at night so that he also gets those extra calories when he would otherwise just be sleeping. If the procedures go as planned, he will also no longer be able to throw up all of these desperately important calories.
We appreciate your specific prayers that the surgery will go as planned and that all of his extra risk factors will not be an issue. He is especially at risk for his hydrocephaly shunt becoming infected (since the end of his shunt is in his abdomen, if any of his stomach acid leaks into his abdomen, it can travel up the shunt towards his brain- which obviously is not a good thing). Please also pray for his heart to be calm and to trust that we will be there to love him through all of this. It will be extremely difficult for him to fall asleep and then wake up with extra tubes and wires all over him. We are hoping for the best, but definitely expecting and bracing for the storm we feel is coming this week.
In addition to these feeding issues, we believe his tethered cord is causing the side effects to progress rapidly. His left leg has started to pull up significantly. We can't even get close to straightening it anymore. Because of that, we are almost 100% sure that Little Man will also undergo serious spinal surgery and scoliosis surgery sometime before Christmas. We need this feeding tube to work and go smoothly so that he will be strong enough to heal from spine surgery in the coming weeks.
While we were drawn closer to the Father during the long, agonizing adoption process, it has been His faithfulness since we have been home that continues amazes us. He has continued to provide the strength, friendships, and respite care (because let's be honest, being a stay-at-home mom is hard enough without adding 100 other difficulties to it- by the end of the week, I'm beyond ready for a break from small children!). I told the Hubs just a few days ago, that I am amazed at the things I have desired for my life have changed so drastically over the years of getting to know Him better. Things that seemed important, now seem outrageously frivolous. But still there have been things that He asked me to release in order to follow the plan He had planned for me- something that was painful at times. An example being nursing school. I thought He was crazy for telling me to go to nursing school, but it turns out that I LOVED nursing, even though I always thought in the back of my mind that I'd end up being a teacher. When I laid down the opportunity to be a nurse to stay at home with Baby Girl, I thought I would never get the fulfillment of an "occupation" like I had always planned. But He knew that while I was training to be a RN, in a small town on the other side of the world, a little boy would be conceived that would need a nurse for a mommy- and one that didn't work at a job in order to take care of his daily needs at home. In the past month, I have marveled that in the small flicker of a dream I once had as a little girl, He has given me the opportunity to be a teacher to the pupils I love more than I could ever love any other student- my own children. What a FAITHFUL God He is! It has been a joy to see that in delighting in Him, He sometimes changes the desires of our heart to match His own, but sometimes, He also hands us our dreams in His own timing, and in ways that are far better than we ever could have imagined.
Because I have seen His goodness, I know that no matter what this week brings, He will continue to be faithful. He will wheel into the operating room with a sleeping little boy that He loves enough to die for. He will sit on His holy throne regardless of what fits are thrown by a terrified little boy in the recovery room. He will fold His wings over an exhausted mama sleeping on a hospital couch, who is likely sobbing over her first night spent away from her Baby Girl. He will provide stamina for a daddy learning to use a feeding tube for the first time. And He will wrap His arms around a little sister who will be spending more time away from her parents than she ever has before.
No matter what, He will be faithful and He will never leave.
Psalm 139
For the director of music. Of David. A psalm.
1 You have searched me, Lord,
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you, Lord, know it completely.
5 You hem me in behind and before,
and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
and you know me.
2 You know when I sit and when I rise;
you perceive my thoughts from afar.
3 You discern my going out and my lying down;
you are familiar with all my ways.
4 Before a word is on my tongue
you, Lord, know it completely.
5 You hem me in behind and before,
and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
too lofty for me to attain.
7 Where can I go from your Spirit?
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
Where can I flee from your presence?
8 If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
if I settle on the far side of the sea,
10 even there your hand will guide me,
your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
and the light become night around me,”
12 even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts, God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts, God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
19 If only you, God, would slay the wicked!
Away from me, you who are bloodthirsty!
20 They speak of you with evil intent;
your adversaries misuse your name.
21 Do I not hate those who hate you, Lord,
and abhor those who are in rebellion against you?
22 I have nothing but hatred for them;
I count them my enemies.
23 Search me, God, and know my heart;
test me and know my anxious thoughts.
24 See if there is any offensive way in me,
and lead me in the way everlasting.
Away from me, you who are bloodthirsty!
20 They speak of you with evil intent;
your adversaries misuse your name.
21 Do I not hate those who hate you, Lord,
and abhor those who are in rebellion against you?
22 I have nothing but hatred for them;
I count them my enemies.
23 Search me, God, and know my heart;
test me and know my anxious thoughts.
24 See if there is any offensive way in me,
and lead me in the way everlasting.
