Adoption, Medical Issues, Opsoclonus Myoclonus Syndrome

Trudging Through the Muck

Trudging Through the Muck

Trudging Through the Muck. It is so challenging to parent a special needs child. Parenting, alone, is challenging. My child has a very rare condition called Opsoclonus Myoclonus Syndrome. Typically, a child with OMS, they will have neuroblastoma in their chest cavity. However, some cases are idiopathic, like ours. Idiopathic means there is no real reason for something to happen. In short, we have no clue what brought OMS along in our child’s life and body.

One day, my child was completely developmentally on target and perfectly “normal” and then the next day, he isn’t. He went from fine to newborn status with a side of extreme shaking, much like Parkinson’s. My child had to relearn all the things. He had to learn how to sit up, hold his head up, walk, talk, feed himself, etc. It has been one of the most challenging journeys of my life.

Support System

I do have a great support system (with the exception of 98% of any doctors). He has grandparents, great-grandparents, siblings, therapists, church, etc. However, no one really knows how it has all played out except those of us who have lived it, daily, with him.

My husband, 6 of my children, my son, and me. We are the ones who have walked it day in and day out. There have been many times I have had people at church pray over us, come to our home to pray, family, friends, who have all loved us well. Truly, they have filled in the gaps in so many ways from encouragement to prayers to food to just listening to me cry.

Yet, there is so much they do not know. There is so much I hold close to my heart because it is hard…sacred…forever changing. I have had to share more of these sacred moments to his therapist because my child is remembering some of the darker moments of his illness. Moments I thought he wouldn’t remember, that I prayed he wouldn’t remember, but he does and we have to deal with it.


When I talk to people about things that are just a part of our life, I realize it isn’t normal. The looks on their faces are shocked, saddened, horrified, and I am just chatting away. Oblivious. This is our normal but when I mention something or someone notices an odd behavior, they are dumbfounded because I speak of this so matter-of-factly.

In the beginning, for several years, our goal was to keep him alive. He lost 3 years of his life doing a massive reboot of relearning everything. Time stood still and we had start over. He had so many hurdles, doctors appointments, therapists, etc. that that is all we did. It is the physicality of the disease that we had to address. Now that the physicality is not so much an issue (barring when he gets sick), now it is the backend of OMS that is kicking our ass. The backend is behaviors, learning disabilities, developmental delays, sleep issues (for some OMS kids), etc.

All the Things and Then Some

This past week, my son has struggled with impulsivity, anger, sadness, sitting still, and listening. The bus monitor had to come to our door to address and issue. We all met Jesus on my front porch. I am going to have to call her and share with her about our kid because she doesn’t know him. To her, he looks normal and should act normal. That simply isn’t the case. Without sharing too much, I intend on shining some light on our rare gem of a child.

He struggles with sitting, on the bus and not listening to simple instructions. The bus monitor was at her wit’s end and I get that but does she ‘get’ him? She doesn’t. That isn’t her fault. My son “looks” like a typical 9 yr old but what she doesn’t see is that he is developmentally about 6 yrs old.

Our son will argue with a tree stump, so he is game on and ready when it comes to anyone in authority. I think he takes after our third and possibly sixth child. Good grief they would argue with anything whether they are right or wrong. The arguing, alone, would make a grown man yield just to make them stop speaking. Our son is the exact same way. He may have a future as a lawyer.

On A Typical Day

I don’t even notice the difference. The age difference between my 6th and 7th child is 8 years. That is a huge gap. In my mind, he is on target until he is with other kids who are his age or even younger. That is when I mourn the loss of what is “normal” and have to readjust to what is in front of me.

It is hard. I am not going to lie. His challenges are steep but everyday we are trying new things but this past week, I was just tired. I get so tired of trying to explain it all away. He is like this because “blah blah blah.” All I get in return is the look of pity or a blank stare of confusion.

We are addressing all of this in therapy. That isn’t going well but we still do it every single week. He has a teacher that loves him and sees him even in the midst of chaos. We have a family that is supportive and a church that is faithful to pray. He is constantly seeing doctors, we have gone gluten free, and so it is an ever revolving door of learning.


Last night, we tackled some hard things that have happened and attached them to emotions. He and I spent about 45 minutes working on identifying emotions and understanding them. My son has a lot of medical trauma, birth trauma, acute trauma, and more. We sat and talked about specific things (lying, stealing, and fit throwing). Each scenario, he chose an emotion card and made a statement “I feel sad because kids at school won’t play with me.” We work on how he can approach these kids and did a little role-playing.

In situations like one of our children not seeing him or his birth mom, we pick the scenario and he makes the “I feel” statement with the emotion with it. I come alongside him and I make an “I feel” statement and we talk about it until he doesn’t have anything left to say. When he is done with the topic, he simply says “let’s move on” and we move on.

I am hoping this helps. The emotion cards are in his room, on the fridge, and I am going to laminate some and put them on his backpack. We have also started giving him some primrose and some all natural calming things to help with the impulsivity and rage.

In The End

I am not giving up on him but I am really tired. The thought of being on easy street sounds so good right now. Yet, everyday is a new challenge. I try to tell myself that he really is on target, even though he is behind developmentally. Honestly, I would chose him over and over even knowing what I know now. I love him and I know that he is meant to be my son, even on the hard days.

However, I would love for a concept to sink in with him. I would love for him ‘get’ it. My fear is that he will be labeled without people understanding who he is and what is behind the behavior. It’s hard to explain. If you are out and about and see a tired mama with a raging kid, show her and her kid grace. You have no idea what is going on behind the scenes. Honestly, you are seeing a fraction of what life is like in an isolated moment. Offer a smile without advice. Prayers are always welcome and you can definitely say a breath prayer as you walk by them.

Love. Be kind. Don’t scream at a kid who might be screaming at you. Even if they look “normal” most diseases are invisible. Grace upon grace.

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Falsehoods and Truth of Adoption

Falsehoods and Truth of Adoption

Falsehoods and Truth of Adoption.

Let me start off by saying that ADOPTION is a beautiful thing!  It has been a desire of mine since I was a child and the Lord saw fit to bring this desire to fruition.  Yet there are some Falsehoods and the Truth of Adoption.

There are several things that people do not tell you about adoption that I wish I had known, way back when…but it still would not have turned me against adding to my family through our domestic and international adoption.  I just believe that I would have been better prepared.

You will automatically love this child.

I wish this were true but there are times when that connection is just not there and love is a CHOICE and not a FEELING.  There are times when adoptive mamas go through post-adoption depression just like mamas who give birth can struggle with postpartum depression.  It is tough.  If you feel like you are struggling or want to sleep all the time.  Maybe your emotions are all over the place or you are struggling with loving this child.  Please, seek help.  There is no shame in talking to a doctor or a therapist.  There is no shame if you need medication to get through this emotional hump.  You are still a good mama.  Relax.  Breathe.  Trust the Lord.  Ask for help.

It will be an easy transition into your family.

Any adoptive parent will tell you that this is a lie lie lie.  I will say that it was much easier with Little Man than it was with Gigi and Catfish.  There is a honeymoon period.  It can last for days (or hours) or months.  When it is over, it is over….that is when real bonding begins.

You have to be rich to adopt.

With the help of friends, family, yard sales, craft shows, and grants….you can adopt.  You do not have to be rich.  In the case of foster care adoption, there is no cost to adopt a child from the foster system and the need is great!

You will love this child(ren) differently because this child “did not come from your body.

Again, it does not take birthing a baby to be a mom.  It takes the next lifetime to be a mom.  I love ALL of my kids DIFFERENTLY.  It is a fact that I do not love them the same.  Yet, I do not love one more than another.  I just love them differently whether they are grown under the heart or in it.

It is easy to adopt

BAHAHAHAHAHAHAHAHAHA…..uhm….no.  International, domestic, private, family, foster care….adoption is A LOT of hard work.  A lot of dedication, a lot of paperwork, a lot of tears, and a lot of emotions.  Those who tell you differently are on medication.

All children in foster care have some kind of physical, mental, or emotional handicap; that’s why they are classified as “special needs.”

Special needs can include several different types of kids.  Children who are of a different race are special needs.  Children over 3 are special needs.  Sibling groups are special needs.  Boys can be considered special needs just because they are boys.  There can be mental or physical needs, as well….but my son, adopted at the age of 4 was special needs because he was black, a boy, and over the age of 2.  He is perfectly fine.  My other 2 children are considered special needs because they are a sibling group.  There are additional needs from those 2 kids, but far, they are just fine.

Natural parents do not care about the babies they surrender to adoption

My son’s mother loves him.  My children’s mother loves them.  They love in their own way.  They were relinquished for different reasons.  Both moms wanted a better life for their children.

The infant does not experience her separation from her mother

There are implicit memories (from birth to 3) and explicit memories (from 3 on).  Whether a child can verbalize or physically remember or not, they will always have those memories.  That loss and grief will always be there.  Regardless of age.

The adoptive family will be the only family the adoptive child will know

Uhm, again…no….These kids will always wonder where they came from and what their story was.  Do all you can to find out for their benefit…even the hard stuff.

Your identity is tied to the adoptive family and not your past

An adoptive child’s identity is founded on their heritage and their past.  They adapt and learn new ways, but their past is a huge part of who they are.

Adoptive families make up for a child’s loss

Again, that loss and grief will always be present.  It should be talked about and openness needs to be encouraged.  A child should never be afraid to talk to a parent about their hurts, fears, and confusion.  It does not mean they do not love you.  They just want to know.

The adoptive child never thinks about their biological family

Yes, they do…all the time.  They just very well may be afraid to verbalize for fear of hurting their adoptive parents.

You should sugarcoat the truth to make it easier on the adopted child

Nope.  This information should be sought after if you can.  It should be delivered in 100% truth as the child can understand and their complete past, what you know, should be completely told to a child by the age of 12.

Adoption damages a child

I don’t believe it does.  My children, though here for different circumstances by their biological families, know they are loved and they are safe.  They also know that their families loved them the only way that they could.

Adoption means waiting years for a child

I was waiting for a year for 2 of my children.  It took 2 years for my other child.  It all depends on what you are open to.  The more open you are to a child of God, the sooner it could be a reality.  If you are tied down to a newborn, blonde hair, blue-eyed little girl…your wait time will be longer.

Children must be placed with same-race families in order to thrive

We are a trans-racial family.  Our family tries to keep his heritage alive by listening to music, reading books, and having pictures, and things from his country.  Also, we try to get together with fellow adoptive families from Ethiopia.  We do the best we can knowing full well that we can never replace a first-hand experience he would have had had he stayed with his biological family.

Single people or people over 40 cannot adopt

Not true and not true 🙂  Age does not matter.  I say if the Lord is calling you…be obedient.  You won’t be sorry.

James 1:27  Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction and to keep oneself unstained from the world.

Matthew 18:5 “And anyone who welcomes a little child like this on my behalf is welcoming me.

If you have any questions or comments, please feel free to ask and I will address them.