Life Isn’t Fair: Parenting Children with Multiple Special Needs

October 29, 2018 adopting later in life, adopting two at once, autism, cochlear implants, developmental delays, Developmental System, epilepsy, hearing loss, large families, October 2018 Feature - Developmental, Sensory Processing Issues, Sensory System, undiagnosed SN, virtual twins 6 Comments

I don’t remember the exact moment when adoption was put on my heart and in my mind. But, I do remember it was all consuming. I tried to get away from it. But, I couldn’t. It was there and it wouldn’t go away.

It was 2015. By early 2016 I finally worked the nerve up to bring it up to my husband. It’s not that we don’t talk often, or that we keep secrets. It’s that I thought he would think that I was crazy!

You see… we have seven biological children and we were done. Our family felt complete.

Earlier that year our youngest, at seven years old, had open heart surgery. She had recovered and was doing great. My oldest son was engaged to be married. Life was good. But, that nagging adoption thing wouldn’t go away. So, I told him. And, the miracle of it all was he had been thinking about it, too.

In April of 2017, one month after our first grandchild was born, we came home with not one, but two sons from China. They were our pride and joy! But life wasn’t ever going to be the same.

Our youngest little guy was nineteen months old. He cried so often, and he kicked his legs all the time. We held him, rocked him, and still he screamed. He would fight taking a bottle. I’d have to hold his head and force it in his mouth and then he would drink like he was starving.

We started noticing weird things he would do. His arms would flail out; his feet and legs would also. He would get a look of terror in his eyes. Then it would repeat over and over. He had a form of undiagnosed epilepsy. The type of seizure he was having cause brain regression. Without treatment they could cause death. Our neurologist suspected he had been having them for a long time. After a few tries our doctor finally found a medicine that took those seizures away. Another doctor told us our son had sensory processing disorder.

It was obvious he was going to need a lot of help.

So here was my new life, spending every day at doctors’ offices, waiting for hospitals to run tests, do blood work, run more tests, complete therapy evaluations and sessions… and all the while he was getting used to being in a big loud crazy family. He was getting love. He had so many cheerleaders at home, and he had his new Chinese brother (not biologically related, but just five months older) who wasn’t affected at all by his brother’s screams.

At first we chalked his behavior up to being from a noisy orphanage, to not understanding English, or to being too engrossed in his play. But, then three months after coming home from China, we found out that our other adopted son was deaf. He was almost two and a half years old at the time. He had been living in a world of silence.

Boy, did this mama feel overwhelmed! But, one day at a time, one sleepless night at a time, I got through it. Then one day I just couldn’t get better. My doctor ordered bed rest. I sort of laughed. No, not me. I have too much going on. But before I knew it I was in bed for about two weeks because my body was worn to exhaustion.

I learned a valuable lesson while I was there. I wasn’t alone in all this. This is a lesson many adoption mamas out there need to learn. You are not alone.

Overwhelmed? Yes! Like you are losing yourself? I know that feeling too well!

But, you are not alone.

We went into adoption with our eyes wide open, or so we thought. I knew I was going to be adopting a child with special needs. We were told, “Pray for the best and expect the worst.” We knew their medical files may not be accurate. I researched things, I went back-and-forth on needs I thought that I could handle, and rejected things I thought would be too much for our family. I knew the diagnoses well that we checked on our medical needs list. I checked and unchecked that list more often than I care to reveal.

But in the end, it came down to seeing that picture in that file emailed by our adoption agency. I just knew. I knew when I opened his file that he was the one. A few weeks later when another little guy whose file became available at a time when coincidence just wasn’t possible, we knew he was also to be our son.

Fast forward a year and a half after that plane landed back in America. I’m a parent of a child with sensory processing disorder, widespread developmental delays, and just recently diagnosed with autism. My other little guy is very close to receiving his second cochlear implant.

Were deaf and autism checked on my medical checklist? No! No! No!

These were needs I had researched and thought, “No, I’m not equipped to handle that. My other children will suffer; it will take too much time to learn how to deal with.”

Guess what mama, these are your children, the ones you fell in love with before you ever met them!

Hold on, because God knew what you needed. You need to depend totally on Him.

Ever wonder if life will ever slow down? It might not. Right now I have two nonverbal children. Something else I really hadn’t considered or thought about before adopting. Will they learn to talk, or to sign, or communicate? Yes, in one way or another, we will learn to communicate. They will learn I love you, and know we are family. But, it might not sound or look like what I had imagined.

These sons stretch us, oh they stretch each one of us! I look back and this family has gotten through all these moments together. In fact we have excelled and had victories on some days. Some days we just survived. Somehow we got these boys to their therapies, their doctors’ appointments, their surgeries, their psychological evaluations. We pitched in and did it.

My other children have done well. They have chosen places and opportunities that include people with special needs. One of my daughters even spent some time helping at an orphanage in China this summer. They have all grown and become strong.

And yes, even though I hate to admit it, they probably suffered a little too, and wished that I had more time for them. Sometimes I wasn’t able to be at an important moment in their life, and it hurt. It hurt them and it hurt me. It’s not easy. Some people don’t understand, and that’s okay. There will always be people who don’t agree with your choices.

Embrace the people who get it, and give a lot of grace to those who don’t.

Was getting two children with big undiagnosed needs fair?
Was it fair my little boy suffered because his needs were not met, and that now he now is in a wheelchair?
Was it fair that no one helped my child communicate while he lived in a world of silence?

No. But, as I have told all my children for many many years: Life isn’t fair. That’s right, let it sink in. Life isn’t fair.

I mean, what about adoption is fair? It starts with a parent choosing to, or being forced to give up their own flesh and blood. And in the case of China adoption, probably never knowing what happened to their child. That baby or child learns to survive without a parent to meet their most basic need, love.

But adoption is also about redemption. These children are ours now. And we are blessed to be able to be their parents! How amazing is that?

So every hard day (and this mama can tell you, so many days are hard), just remember that one day at a time, sometimes one moment at a time, you are going to get through it.

For me, it’s an attitude. Instead of looking at my calendar and wondering, “How am I going to find time for all these therapies?” I need to look at my calendar and change that how into a “Wow! Thank you God that all these therapies are available to help my boys. There are wonderful people out there who care about them, too. They are working hard to make sure that my child’s needs are met and that they excel as far as they can.”

Our therapists have become so important in their lives. Each therapist and doctor and teacher has taught me something about being a better parent, even when we part ways or don’t agree. When you find that right balance it’s so worth all the work to get there.

So as I start walking the road toward my second year as a parent of adopted children, I also start my twenty-second year as a parent. And something I tried to teach my children all that time ago is still very true today. Life isn’t fair. But, oh so many blessings abound in this time and place for us and our children.

Please make sure to take the time in your busy overwhelmed life to find something to fix your eyes on and be thankful for. God knew this road was ahead for you.

Parenting children with multiple needs is tricky. It’s so important to start each day fresh and find some good in our hard moments. Find and seek out those who are going through similar situations. You are not alone in this. One day you will be able to take someone by the hand and show them how you got through it.

And, if you are like me right now and living one moment at a time, don’t be afraid to ask for help. Your world is about to open up. But because of that opening and growing, some days are going to be very lonely. I’m sorry, but they are.

Be open, be humble from the start. Be prepared to sacrifice more than you thought possible, and you will grow.

You are changing the world by changing the life of your child.

– guest post by Mollie

6 responses to “Life Isn’t Fair: Parenting Children with Multiple Special Needs”

  1. Wendy Ceulemans says:

    People like you make the world a better place…thanks for sharing your story with us. It is really inspiring to read about your coping mechanisms and your positive view on very difficult things.

  2. Joann Brugger says:

    Precious Mollie, I always knew you were precious!! God bless you and yours forever more. All my love, Aunt Joann

  3. Jae says:

    Wow, y’all are truly an amazing family, God’s blessings upon y’all!!!

  4. Amy Bliss says:

    Thank you Mollie . These are all things I’ve been feeling and I appreciate you sharing so honestly . It was an answer to my prayers and worries ! 💕

  5. Julie says:

    So proud of you, my cousin!!! This article was so beautifully written and so raw. More true is just how incredible you and your family are! <3

  6. Jane says:

    Thank you for sharing your story. God does write the best stories.

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