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Friday, September 14, 2012

.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.



Tara said...

Beautifully written. I can suggest some door and window alarms. I had an escape artist as well and these were a lifesaver. They were not very expensive. Lowes and home depot have them. God bless you and your beautiful family.

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