.Dear Special Needs Mom.

I see you. Yes, you, the tired, worn out mom, the one who has held onto hope and had it snatched from your palm more times than you can count. The mom who has been to countless specialists with her child, and learned to speak the language of special needs - the big words that blanket a diagnosis but that could never contain the absolute delight and wonder that is your child. I see you sitting up late at night, hunched over your laptop, fingers tapping over the keys, your eyes searching and reading - your researching this life your child has been handed. I see you pour over new tools and therapies. I know that you know that you are your child's best advocate, and how essential every piece of the research puzzle is. I see the searing tears as you read yet another description and can check down through everything for your child - another reminder that this diagnosis is real. I see the moment that you release denial and how beautiful and awful it is for you. Mom, I see what you typed into that search bar, I see when you questioned why this happened to your child, and I see you blink back tears as you wonder again if you had done something wrong, if somehow you had brought this on your baby.

Mom, I see the questions that you have that never get answered. I see the anger, and the heart break behind the plastic smile that you bravely put on - so that others won't feel weird around you. I see the days where you are just surviving - just a series of motions to get through until bedtime, and I see the pain and the guilt you feel for those days of just making it through. I see the way you look at your other children and worry that they no longer get enough of you. I see your whole body finally relax as you peek on your sleeping child, and know that you have made it through another day. I see that your are thoroughly exhausted in a way that you never knew was possible. I see the lines around your eyes, and bags and puffiness, and I see you see them, too, and grieve your youth and what used to be. I see how completely spent you are at the end of everyday, and yet how hard it is to find rest. I see the sleep deprivation, the nights when you stay up far too late on the computer, or just sit in front of the TV enjoying a moment of solitude, and I see you get up far too early when sleep never comes. Those mornings, when you wake up, and you realize that it is another day, and you have no idea what the day holds for you or your child - whether it be a seizure, a tantrum, a first word, grueling therapies, or a day like none other before, and you pray to God to give you mercy and grace for the moments to come, yes, I see that too. I see the days where you are so hard on yourself, because you become frustrated and discouraged, and you know you should be more empathetic and do better, and you feel this way sometimes even when you are giving your all, because sometimes your all just doesn't seem like enough.

I see the days when you hardly eat, because there is no time, and you are so focused on trying to figure out what your child will eat. I see the pots of coffee that you sip alone, the ones that used to be shared with friends. I see how isolation has become your company, and how you escape into facebook just to forget for a few moments the chaos around you. Friendships are complicated now, your heart hurts when you do not get invited out and the other moms do. But your heart also hurts when you do get invited out because you know that your child needs you in a way that only you can give. I see the way you miss out on activities and fun because it is easier to stay in your home, then take your child out and face the stares, the judgments, the meltdowns. I see the way that you have to exactly execute every trip to the supermarket, the library, to church. I know you calculate in your head whether it is worth it to bother doing the errands that day or can it be put off for another, when perhaps you are feeling courageous, less tired, not overwhelmed, but then those days do not come, and you suck it up and do it anyway.  I see when you do brave a restaurant, and the way you hold your shoulders tensely, just bracing yourself for a nightmare. I see you wince when your child flaps, and screams and bangs his head, and vomits because the texture of the food was not just right. And Mom, I see when you pretend not to notice the stares from the table next to you and the whispers about your parenting abilities and the fact that your child is way too big to still be strapped into a highchair. I see the way your heart stings, as you pull your mouth into a tight smile, stroke your child's head and give a kiss that you do not always feel like giving. I see the way your heart breaks for your child when the world looks on cruelly. The pain is intense and takes your breath away, and I see that.

But mom, more than anything, I see how much love you have for your child, love that oozes out of every pore of your body. I see the belly laughs that only your child can illicit, the joy that radiates from your home, because you were given this gift. I see the ways your life has changed, and the selfishness that has been weeded out, as you give of your self daily for the sake of your child. I see the way the world has taken on a different hue for you, and I see the compassion and the tenderness you radiate when your eyes meet the worn out eyes of the mom with the tantruming kid in the grocery store. Gone are the judgements of yesterday, because you have been in her shoes, and you know that while a child seems typical on the outside, the inside may tell a different story, so you breathe grace at that mom and pray for the same in return. Mom, I see how painful this journey can be, but I see your strength and I see that you truly wouldn't change it - any of it. I see you rely on Jesus in a whole new way, and I see that truly He is your strength. I see the way you cherish the little moments and celebrate things that most people will never notice. I see the way you appreciate life in a whole new way, and I see the new softness that you carry with you. I see you becoming the mom you were intended to be, and I see you making a difference in this world. I see the way people watch and notice how you live, and I see how intentional and purposeful you are with the moments gifted you.

Mom, I see you, because I am you. You are not alone, and neither am I. I am a special needs mom, and I am with you in this beautiful, agonizing, amazing, and grueling journey that we have been chosen for. And, Mom, I say in agreement with you, it's all worth it - every little piece of this journey is worth it. And today when I pray for strength and grace and mercy for me, I pray the same for you. Our lives are different than we imagined, but sometimes different is better. Be kind and patient with yourself today, take heaping spoonfuls of the grace held out for you. Don't compare yourself to her, her journey is not the same, and that is okay. What looks more fulfilling for her may only be a part of the story, focus on yours. Take care of yourself and find a place of nurture and peace and safety, just like you do for your child. Please know that your love is making a difference, even when you feel inadequate, exhausted, frustrated. When you feel weak and impatient, know that He will keep giving you the strength for the journey - you are strong enough. Love is the greatest gift you can give. Give it freely and don't sweat the other stuff.

Mom, I see you, and you are enough.

.I Would Still Say Yes.

It was weeks ago now that the question was asked, at our county fair. But the question has lodged in my head and rattled around over and over. The man looked down at Jamesy who was tightly strapped into his stroller. (Whenever we go into public Jamesy is almost always strapped down or secure in our arms. This is to help him not feel overwhelmed and to keep him from running away.) As Jamesy gets older his uniqueness becomes more and more outwardly visible. Jamesy sat in his stroller, looking every bit of almost three, but he was far away inside of himself, banging his head and grunting. The man turned to Jim and asked the question that now keeps spinning in my head.

What if you had known all of his special needs, and the extent of the care Jamesy will probably need for the rest of his life, before you had adopted him? Would you still have adopted him?

When Jim first shared this encounter with me, my dander was immediately raised, and my mama bear instincts had me nearly baring my teeth. However, I realized that to someone living outside of the gospel, it may be a relevant question. And perhaps others are wondering it, but aren't brave enough to ask. I haven't shared a lot about Jamesy's special needs on my blog - specifically the day-to-day. Maybe it is because I am living inside of it, and truth be told, the day-to-day is hard, and we are just taking one day at a time, uncertain of how the future will play out for our boy. Maybe it is because after a year and a half this just seems normal now. Perhaps it is because I fear painting a sour or scary picture of adoption, especially adoption of special needs children who so desperately need loving families to stand in the gap and bring them in as their own. Sometimes when my house is still and quiet and I reflect on my children, when it comes to Jamesy, I feel overwhelmed and so heavy with sadness. I have to admit that it has happened more lately. He is getting older, and the delay behind his peers is ever widening. The gap is visible now. People look at him and know. And for his mama, this breaks my heart.

Jamesy has Septo Optic Dysplasia. It is a rare diagnosis, which few doctors have even worked with. It impacts sight, cognitive development, speech, hormones, neurological areas, etc. Due to the umbrella of this diagnosis Jamesy also has Sensory Processing Disorder - he is sensory seeking on the spectrum. This means that he craves running, jumping, loud noises, bright lights, swinging, bouncing, very rough play and touch, and lots of oral stimulation. (A lot of his behaviours present like Autism, this is typical with Septo optic Dysplasia, but we are still leaning toward actually testing him for Autism.) Jamesy has no fear, and any chance he gets is looking to either run out the door, jump off the top of the couch or bunk bed, or swing from our chandelier. He moves all day long. People do not believe us until they see it. This actually manifested itself in a very scary way several weeks ago, after Habi first came home. In the craziness of a busy evening, Jamesy escaped from our house and wandered off. Fortunately someone found him and the police safely got him. However, this incident still has Jim and I under investigation with CPS. Unfortunately our local police station and CPS are not understanding or lack education when it comes to the day-to-day life of one of these precious children with SPD.

Almost everyday is filled with a team of therapists who come to the house to work with Jamesy. At almost three years old, he only has a handful of words that he uses sporadically. It is very difficult to communicate with him. This is one of the greatest daily challenges we face with him. Our speech therapist is amazing, and is helping us learn how to unlock the speech that we feel is "trapped" inside of him. An occupational therapist comes and helps us with the sensory side of things. She has taught us how to use a therapy brush on Jamesy twice a day, and has shown us many sensory activities to give Jamesy the input that his body craves and needs. The hope is when Jamesy's sensory needs are met, he would be able to focus and be more attentive. This should help with speech, sleep, and melt downs that we experience with him. A vision therapists helps Jamesy learn how to use the usable vision he has. All of the therapies make for hectic days and long weeks. It is a lot to juggle with housework, meals, homeschooling, driving Habi, schoolwork with Habi, and everything else that goes into being a wife, mommy, and Pastor's wife. It's only by the strength and grace of God that anything gets done well.

My days are filled in ways that I never imagined they would be. I have become a mom to a special needs child - you know the one who has to fiercely advocate for her child, educate people who help care for Jamesy, and the mom who spends hours on the internet and in the library pouring over books and articles that can help explain the needs my son has. I have learned a new language - medical words I never dreamed I would know and understand. I pray for things I never imagined praying for, like for the day that Jamesy can actually play with his siblings and communicate with us. Please God let this happen. Our nights are filled with a little boy who does not sleep - an almost three year old that has to be swaddled so tightly (that I am constantly checking him to make sure he is okay) to even begin to calm him enough to sleep. If everything is not perfect for him at night, he will not sleep. It doesn't matter how tired he is, or how tired we are.

Jim and I tip-toe around the subject of how this will look for us in the years to come. It is heart breaking to know that although Jamesy's body will grow up, his mind may never. Truthfully, it is something very heavy on my husband's heart right now. I cannot imagine how it feels for him, as a man, to know that he can never "fix" our child. Jim is a rock, and I pray for grace and peace to wash over him. We try really hard to focus on the here and now. And there is so much JOY to be had in the here and now - even in the middle of the crazy and chaotic. There are days when I cry a lot, but there are days when I laugh a lot, too. This disease and disorder does not define my Jamesy, and I will fight to never let it. Nothing can change who my precious Jamesy is, made in the image of God, fearfully and wonderfully knit together. He is loving and silly and just pure joy. I am learning to give myself and my family grace. It is okay if our family looks differently than others. It is okay if we cannot participate in things because it is too much for Jamesy. It's okay if I have to skip church because Jamesy is having a really off day, or if we go to a restaurant and he screams at the top of his lungs and one of us has to squeeze him tightly and pace the parking lot. It's okay if we get looks from other parents and grandparents who obviously think we are not disciplining Jamesy enough. The screaming would surely stop if we just disciplined it out of him. {snort} It's okay that Jamesy changed friendships and we can no longer easily slip into someone else's home for dinner or fellowship. It really is all okay. I am learning to embrace the new life laid before us. I do wish I could make life easier for Jamesy, but that is not the road God paved for him. I trust God. I wish I could educate the world about his diagnosis, so that they too could give him grace. But the job God gave me is to be Jamesy's Mommy. Just typing that has reduced me to tears. God in his goodness and grace chose me for his Mommy.

Yes, things are hard here. I would be lieing if I painted a different picture. My life is unfolding in a way I never expected. I am becoming someone different than I dreamed of being. Regardless, Jamesy is the same beautiful little boy that we fell in love with two years ago. He is amazing, and our family would have a huge void without him. We said yes to Jamesy knowing he had special needs. True, we didn't know the extent of them, but had we known, I can honestly say that 1000 times over we would still say yes. Jamesy is our son. Our precious, beloved, wanted son. Even more than that, Jesus said yes to us and all of our special needs. Jesus loved us first, long before we loved him.

Jesus and His Gospel alone is enough to say yes.

Perhaps I would have done things differently had I known, perhaps I would have prepared more, asked for help more - especially in that first year home before an official diagnosis. Perhaps I should ask for help more now. Regardless, we are doing it. Jamesy is teaching me more about the heart of my Father than I have ever learned before. And through our family, and even the special needs and diagnosis of Jamesy, I know with all of my heart that God will be glorified. Jamesy's life has a purpose. I am so thankful to be part of it. I am so thankful to have said yes.

It's in the yes, that God is changing me and sharing with me His heart. It's in the yes, that my brokeness is drawing me closer to my Savior. It's in the yes that I see who I am in Christ. It's in the yes that God's kingdom is unfolding around me. It's in the yes that my weaknesses become blindingly obvious, but it is in that same yes that His strength is being perfected in me.

I would still say yes. I needed that yes.

.A Few Answers & More Questions.

Thank you for the prayers for Jamesy's appointment, as I said yesterday, they carried us. The phone calls, messages, and emails were the cherry on top. Thank you. I have no idea how people survive without the body of Christ.

Monday was a loooong day. Jamesy was a trooper. We were so proud of our brave, little, brown eyed boy. Jamesy had appointments with three different specialists. They were each wonderful and knowledgeable, but each hold slightly different opinions. Opinions which we are still sorting out. The following is a very brief summary of what we were able to decipher at this point.

Jamesy may or may not have Septo Optic Dysplasia. Confused? Yeah, so are we. {sigh} Let me back up and walk you through what we gathered from each specialist.

The Pediatric Neurologist: We brought the CD of Jamesy's MRI and the results with us to the children's hospital. The neurologist looked at it and told us that the MRI was of inferior quality, and that he could not conclusively say that Jamesy has Septo Optic Dysplasia. (This was good news to us! Fantastic, excellent - almost miraculous news in our book after walking around heavy hearted for two months thinking our precious baby had this potentially scary disorder!) He suggested that the radiologists at the children's hospital take a look at the MRI to see if they could give a more accurate picture and diagnosis. The neurologist examined Jamesy and performed a few tests on him. He said at this point Jamesy's issues are not neurological - praise God! However, if Jamesy does have Septo Optic Dysplasia this puts him at a higher risk for developing seizures and learning disabilities (there is no guarantee that he will or will not develop them), so if those were to present themselves we would need to once again pursue help from a neurologist. He did suggest that we have Jamesy evaluated by a pediatric neuro-opthamologist, as he thought that would provide valuable insight into Jamesy's case.

So, we walked away from that appointment on cloud nine with the thought that Jamesy may not even have Septo Optic Dysplasia afterall. We could not have imagined better news to start off our day with.

The Pediatric Opthamologist: I was not really expecting much from this appointment. After all we had already had Jamesy seen by our own pediatric opthamologist closer to home shortly after bringing Jamesy into our family. She had told us that Jamesy's vision was perfect, but that his optic nerves were underdeveloped. What more could we learn?

We learned that Jamesy's vision is definitely not perfect. (Yes, he can see!) However, he will most likely be diagnosed as legally blind. He has very little if any peripheral vision and probably poor depth perception (which I had begun noticing here at home), and he does have the underdeveloped optic nerves. He has definitively been diagnosed with Optic Nerve Hypoplasia due in part to the underdeveloped optic nerves. Jamesy also seems to have some strabismus. At this point in time glasses would be of no help to Jamesy, but in the near future they may provide him some vision improvement. The doctor reassured us that although Jamesy is definitely visually impaired it is not likely he will ever be a candidate for a walking stick or need to learn to read using braille. He was very honest with us in saying that is is highly unlikely that Jamesy will ever get a driver's license, though.

Jamesy suffers from shoulder and neck problems because of the use of his null point (the visual angle in which he positions himself to see best. Jamesy sees best with his eyes looking up while hunching his shoulders and dipping his chin), so the doctor would like to discuss the possibilities of surgery to help with this at our next appointment (which is scheduled for February). He said that he would definitely recommend eye surgery for Jamesy before he entered school (and possibly sooner because of the strain on his neck and shoulders). The surgery would help with both the strabismus and the null point, but surgery will not be able to correct his nystagmus (the almost constant back and forth movements of Jamesy's eyes) - that is a life long disorder that he will carry. We were told that Jamesy's nystagmus and underdeveloped optic nerves were pretty moderate - meaning the doctors had seen worse and better.

We LOVED the pediatric opthamologist and his Resident (who reminded us so much of my brother Ben that we instantly felt a connection with him). We felt as if we were finally really listened to and given very knowledgeable answers. The opthamologist was not able to look at the CD of the MRI that we brought with us, but regardless of that he indicated that he does think that Jamesy does indeed have Septo Optic Dysplasia. Confusing, right? We are guessing that he has seen enough cases similar to Jamesy's to have a pretty educated guess about the diagnosis.

So we walked away from appointment number two feeling as though we had learned a ton but feeling very confused at the same time.

The Pediatric Endocrinologist: This was the appointment that I was the most nervous about, because I knew that the hormone part of Septo Optic Dysplasia is what could get really scary with that diagnosis. The doctor was young and quirky and easy to talk to. He was especially interested in Jamesy's growth pattern, and concentrated on that. He checked Jamesy over and was very positive in that Jamesy's "male parts" are all appearing normal. The sex organs and hormones can be very severely affected with this disorder. The doctor ordered a full pituitary gland work up and hormone check to be done on Jamesy. We have decided to do this closer to home. It has to be done by a hospital who draws on pediatrics, and it has to be done by 8 AM in the morning because some of the hormones that need to be checked naturally peak at that time of day. This is not something that we can get done at our hometown hospital, unfortunately, so we will be making a little drive. We really wanted to squeeze this in this week before school starts on Monday, but it is not looking probable. The doctor suspects that the blood work is going to come back normal because of how Jamesy has grown since coming home. However, he did say that Jamesy may not follow a textbook being that he is from Ethiopia. So, we wait and see. In my heart of hearts I feel as if the tests will come out fine. We meet with the doctor again in February, and we will hear the results of Jamesy's blood work shortly after it is submitted.

The endocrinologists took our CD of the MRI, and he will have radiology at the children's hospital look at it. However, he believes strongly that Jamesy will need to undergo another MRI to get an adequate diagnosis and to very carefully look at his pituitary gland. We were advised to get this done at a different hospital than the one we originally went to. I cannot even imagine Jamesy going through an MRI again, so I am praying that somehow the radiologists will be able to gather all of the information they need from the "inferior" MRI results we gave them.

Jamesy still needs prayer. We still need prayer. I had no idea the toll this had taken on our family until this week. It is really hard to know that my child has something wrong with him that is so outside of our control. It is hard not knowing what the future holds. It is difficult seeing other people's healthy, whole children. It is tiring putting on a happy face and trying to appear normal so as not to suck another person into our drama and melancholy. To allow other people to break with us sends us over the edge, so we put on the smiles and push through. Then add on top of that adoption stuff that we daily work through. We are exhausted and broken, but we are hopeful and feeling positive about his appointments on Monday. We long for normalcy once again, but more than anything we long for God to be glorified in our family.

And for the record, I feel as if this must be publicly said, because it is something I have actually been asked - YES, 100 times yes, if we had known Jamesy may have a potentially scary disorder we still would have adopted him. He is our son. Period. This will sound harsh, but until one adopts I suppose one cannot fully understand this - that question is like me asking a mother or father with a sick birth child, had you known your child would be sick would you have still birthed her?

Of course our answer is and always will be yes.