Are special needs families isolated? by Erin Loraine

Do you feel isolated as a special needs family? I know there are plenty of times I do. Our family is different, and our dynamics are different. My friend Erin wrote this post and it resonated so much with me that I asked her if I could share it here. 

Erin's family consists of 2 biological boys, a little girl with cerebral palsy adopted from Ukraine (besides her CP, she also has a diagnosis of microcephaly, some cognitive delays, and falls in the autism spectrum, she also happens to be my daughter's best friend from the orphanage) and a little girl with Down syndrome adopted  from Bulgaria.

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"We'd love for you all to come over for dinner!  The kids can all play in the basement while we visit!"

"Would you like to meet us at the park?"

"You are invited to my child's birthday party!  It is at 6:00pm.  She'll have a blast!"

I'm sure you have had those invites.  I've had them and accepted them with great joy over and over again in my 13 years of parenting.  I love fun!  I enjoy fellowship with others.  I like time with my friends to laugh and have fun. 

Now let me tell you why each of those scenario's doesn't work for our family anymore.  My girls absolutely can not be left alone in another person's house.  Oksana can manage OK in some houses but she still gets into things she shouldn't, knocks things over because of her balance issues, and trips over things, often hurting herself and/or the children around her.  I don't leave Anya unattended in my own house where I have it appropriately childproofed for a 5 year old with DS.  There is no way at all I can leave her unattended in someone else's house.  I learned from experience that Larry and I have no fun at all in these situations and we leave far more frustrated than refreshed.  Oh and don't forget that now Anya is totally overstimulated and will give us negative behaviors for a couple of hours following our "fun" get together.

So what about the park?  Well let me tell you about that.  I once went to a park outing with a bunch of homeschool moms.  I was SO excited for the chance to visit with these women.  What happened is that they sat together under a pavilion and talked while their kids played.  I ended up on the playground with their kids because Oksana can not be left in a park to navigate the equipment alone.  Now that I have Anya, parks will not be happening at all without Larry.  Anya will end up in the parking lot, or sitting on a stranger's lap, while I am taking the 20 minutes necessary to help Oksana maneuver the slide while a gaggle of children wait behind her. 

Birthday parties?  Certainly every kid loves a birthday party.  We now have to say no to every single evening birthday party invitation.  Trust me, we tried it, and every single one ended in disaster.  Oksana needs her sleep and when we keep her up late and then at the same time totally and completely overstimulate her it ends in a major melt down.

I don't say this to complain.  I love my life.  There is nothing I have ever wanted more than to parent all 4 of my children regardless of their abilities or impact on my social life.  I say this to help others understand, and to say that living with a family like this puts us at great risk of isolation.  I am involved in a number of online communities and this is a theme I see come up over and over again.  Families are isolated.  They are lonely.  People don't understand them.  I can relate....and I'm not sure what to do about it.

One solution is to have people to our house.  That is certainly an option.  Can I be honest about this?  It takes a great deal of intention for me to do this.  I know full well that while having people over is the best route for our girls, it is also the hardest route for me.  Now I need to clean my house (I'm sorry if you think that is crazy but I can not comfortably have people over when they have to make a path to get through my living room), I need to consider what I will feed them (did you know I hate cooking?), and I need to give them the speech about what to do if one of my children tries to hug them, sit in their lap, etc.  Then I have to give Oksana the lecture about giving people personal space, not using them to lean on, etc.  Can you see why I'm not on the phone inviting people over every weekend?

We do have other options.  One is that Clayton is 13 and since the girls go to bed so early we can put them to bed and then meet up with people.  I'm not saying we are out of options, simply trying to show that living with kids with special needs can easily put you on a slippery slope to isolation.  Does anyone else feel themselves slipping away?

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Erin has a great heart for adoption and special needs. Visit her blog and leave her a message!

What If I Walked In Her Shoes?

My daughter, Nina, has cerebral palsy. Sometimes I wonder what life would be like walking in her shoes...

My husband and I have been watching Parenthood, the NBC hit show. The show revolves around the three generations of the Braverman family. One of the grandkids, Max, has Aspergers. In one of the scenes we recently watched, Max is having a meltdown, and his dad is visibly upset. At some point, Max stops and asks the question, "Are you angry wit me because I have Aspergers?" The question is enough to make his dad stop in his tracks, take a deep breathe and reassure his son, "No, I am not angry with you because you have Aspergers."

We paused the show.

"Do you think sometimes we are angry with Nina because she has cerebral palsy?" Andy asked.

It was one of those sobering moments, when I had to think about my recent interactions with my daughter and the times I got frustrated with her, and yes, even angry.

"I think sometimes I act that way." I had to admit.

"You know, it's so easy for us to move, to do things, to just get up and go. I know she is incredibly distracted and that slows her down even more...but she lives with it. Every moment, of every day, she has a body that does not respond to what her brain wants to do. We are not helping the situation when we act like we are angry with her because she has cerebral palsy. Because we are proud of her, she has come so far despite of her disability."

"I don't think that I am angry because she has cerebral palsy, but I do think I am angry with cerebral palsy sometimes, and what it takes away from Nina."

And my husband's words stay with me...

She has to live with it every day.

And the truth is, I just don't think I get it. I am not sure that I will ever understand what it is like to be a prisoner of my own body. To get up every day with tight muscles, fighting every move just to get dressed. Strapping on my braces so that I can walk better, but knowing that every step takes an incredible amount of thought.

And she does it, with a smile.

This little girl embraces life to it's fullest. I know sometimes she feels like giving up, and we don't let her, because we know she can accomplish anything she sets her mind to. And so she tries harder, and she keeps pushing, and she exemplifies the courage of the human spirit as she faces the challenges of every day life...and her body.

If only I could really understand what it is like walking in her shoes.

Because her cerebral palsy was a death sentence not too long ago. It could have taken her life. An orphan in Ukraine with cerebral palsy does not have a hope or a future. An orphan with cerebral palsy in Ukraine has little chance to be embraced by the culture, or by her family.

Almost 4 years she spent in an orphanage. Alone. Her body so tight from a lack of movement, stimulation, and therapy. Her skin so unfamiliar to touch and a warm body to hold her when she was scared, sick, or in pain.

She has come a long way.

She is a fighter.

She is my hero.

So why do I act sometimes like I am angry with her because she has cerebral palsy? I so easily forget.

She has to live with it.

What would my day be like if I was walking in her shoes?

Every single step, every single movement, I would fight my body. Yet at the end of the day, after I walked across my classroom, walked from room to room in my home, when I can use the bathroom independently, and take 35 minutes just to get dressed or undressed, it would be an incredible accomplishment.

I would know what it is like to give my very best, to give it my all.

I would know what it feels like to do life with courage.

And I would know what it is like to face a body that wants to limit me, yet to get up, move, and say, "Not today. Today cerebral palsy won't stop me. Today I win."

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This is a post for the writing prompt: Walking in his/her shoes. Join us!

If I Knew Then What I Know Now

At first, having a child with special needs seemed like an impossible and daunting job. Looking back a t the scared mom I was five years ago, I wish I knew then what I know now. If I could go back in time, this is what I would say…

 

• Dealing with the diagnosis is one of the hardest parts of the journey. The rest is simply everyday life.

• Grieving comes in waves. New stages might require new things to grieve. It’s okay, it does not mean you don’t love your child, or that you have not accepted their diagnosis. It is normal to feel this way.

• Reaching milestones will be an accomplishment of extravagant joy and celebration.

• Your child will be a child first. Their disability will only be a part of who they are, not what defined them.

• You will love your child with a fierceness that will surprise you and fuel you every day.

• Your heart will expand a 1000 times over.

• Your child will bring you incomparable JOY.

• You will come to realize how much you needed your child.

• Thanks to your child, your priorities will change as you understand what really matters in life.

• It will not always be easy, but it will be good!

• You can do it, and you will be better than okay.

(This post was first published on ellenstumbo.com)

Not Alone - Choosing Love

A few months ago I was contacted by Mike Woods, the special director of a special needs ministry in Orlando. He had a vision to create Faith based community for parents of children with special needs. So he rallied a group of writers to join him on this project. His heart behind this? To remind us, parents of kids with special needs, that we are Not Alone.

When he asked if I would be one of the contributing writers, I felt humbled and honored to be considered amongst the incredible group of writers. Many of these are people I follow and respect in this journey of life with kids with special needs.

Nonetheless, I agreed to join in, and I have been blessed by the posts from Not Alone.

And today, it is my turn to post...

Choosing Love

I held a precious baby girl in my arms. So perfect. So soft. My heart pumped love through my veins. A fierce, passionate love that would conquer the world for the baby that slept in my arms. Finally, I thought to myself, I understand God’s unconditional love for me, for there is nothing this child can or cannot do to make stop loving her.

However, it was the birth of my second daughter that shattered my understanding of love, for my new baby girl brought with her a diagnosis of Down syndrome.

And so I held a broken baby in my arms. Her face different, with some of the common physical characteristics of Down syndrome. My heart pumped fear, grief, and shame through my veins. Why God! I challenged Him, Why did you give me a broken baby? Why did you choose me? I have served you faithfully, and I said you could do with my life what you wanted, but this?

My baby also had a broken heart – an ASD and a VSD – and a rare form of jaundice. I felt lost. Lonely. I was the pastor’s wife shaking her fist at God and pleading with Him, “Why me!”

click here to KEEP READING

When Being Honest and Open is Hard..But Good

Last week I had a hard time hitting the "publish" button when I shared about why I did not write a review about last year. Talking about church is difficult, and finally sharing about my struggle with anxiety issues felt extremely vulnerable. You know, since I should have it all together being a pastor's wife and all. But in all honesty, I would rather do ministry from a place of brokenness, where I am real, and where what I have to offer is what God has done in my heart and my life.

And it also feels so freeing! yet now I am beginning to question myself, "Why do I have this need to do life in public." Maybe it is because our lives are already public and open to criticism from leading a church. But I also think I feel compelled to do so for the same reason I write. Because I am broken, and because I believe in community, and because I do believe that my story can connect with your story. 

I also did not expect the outpouring of love and encouragement from comments here to emails and facebook messages. Thank you, thank you so very much for your words and for taking the time to reach out, I appreciate it so much.

Life is such a journey, for all of us.

I am learning about taking care of myself. I am learning about trusting God, and that He has us here for a reason. Although it is hard, it is also a good place to be.

I am also learning (once again) that when I open up about my own struggles, I allow other people to do the same, and maybe we can encourage and uplift one another. We remind each other that we are not alone.

So being honest and open is hard...but it is also good.

This Is Why I Write

I write because I am broken.

And I have found great beauty in this brokenness because of the great love and compassion that surround it.

When my second daughter was born with Down syndrome, she challenged what I viewed as perfect, worthy, important, and valuable in life. I had received her as a broken baby, only to quickly recognize that I was the broken one. The treasures I have discovered along the way are not found in strength, performance, eloquence, character or confidence. They are found in brokenness, where beauty is found unexpectedly as a result of God’s love and compassion transforming my life.
- Ellen Stumbo

That was the beginning of my brokenness. Once I recognized who I really was, a beautiful journey began to take place. Yes, I am a writer, and writers write. However, it was through writing that I explored my feelings, my thoughts, ideas, dreams, and passions.

I felt passionless for along time. Then suddenly I had a baby girl with special needs that made me recognize how self-centered my life was. Acknowledging my brokenness gave me passion to live life different. I needed to be broken.

Through my personal blog, I began to share about life with a baby with Down syndrome. After a while, I began to receive emails from other women who were struggling with a new or a prenatal diagnosis of Down syndrome. Somehow, it seemed, my words touched their heart and they needed someone to talk to. I prayed for each one of these women, and soon I recognized I was part of a greater story where I only had a small part to play. But however small, I considered it to be an honor and a “high calling” so I continued to write.

When our “special needs” family expanded by adopting a child with cerebral palsy, I began to write about adoption. Mainly, I was writing about the emotions of adoption, because I wanted to be honest and real about the process. Adoption was hard. I wish someone had reached out to me and affirmed that my emotions were normal. After almost a year, when I finally had someone in the adoption community to talk openly and honestly about all my feelings, I knew it was time to share those through writing.

I write because I want to offer hope, courage, and community to those reading my words.

I write because I don’t want the hurting, struggling, or broken to think that they are alone in this journey of life.

And I write honestly, because if I only tell you what makes me sound good, perfect, or like a worthy pastor’s wife, then I have cheated you in some way. If I tell you that adoption is hard, but I don’t tell you that it took me more than a year to feel any love for my child, I have alienated you if you too are an adopting parent struggling with love. If I tell you that I struggle with anxiety, but I don’t tell you that almost a year ago I had to ask for help, then I have made you feel lonely in your own struggles thinking nobody will understand or that you are “worse off” than the rest. If I tell you that being a parent is a joy, but I don’t tell you that at times I feel like a failure as a mother because of my media addiction, then I am not allowing a level of accountability or honesty to enter into my life, and maybe yours too.

The most personal is the most universal, the most hidden is the most public, and the most solitary is the most communal. What we live in the most intimate places of our being is not just for us but for all people. That is why our inner lives are lives for others.
- Henri Nouwen

And this, this is why I write.

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Linked up to the writing prompt, Why I write

Why I Didn't Write a Review About Last Year

It is typical in the blogosphere to write a review about the year we leave behind. I tried to do that, I even included the topic for one of the writing prompts. Yet, if you read my post  you might scratch your head and wonder why I shared so little. But that is my professional writer blog, so it was all good. However, this is my personal blog, where I get more personal and sometimes a little bit raw. I didn't have the emotional energy to write a review about last year because it was hard. There is a reason why this little blog has been neglected in the last year too.

As much as I share about brokenness, there are some broken places I don't write about. Mainly because I don't know where to draw the line when it comes to writing or sharing about ministry. When your husband is a pastor, church is a big part of your life.

Church has been hard. Really hard. Maybe it is the difference between being the associate pastor to being the senior pastor, I really don't know. But I do know that it has been hard.

This summer, I was ready to walk out. Not just out of the church, but I was done with ministry for good.

We were in the pits of discouragement.

Andy and I attended a pastor's retreat at that time, and I don't know where I would be in my heart if it had not been for that time spent away and resting before the Lord.

In a small church, you end up doing all the jobs, and you also end up getting all the heat (for the things you do or the things you don't do).

Oh some things have been good, exciting even! Some new people have come and our church is now hosting a clothing give away once a month that I really love to be a part of. Yet, the ministry here has been hard and incredibly lonely.

And this is where I struggle to share more, because it is still so hard and so lonely.

Emotional distress has a way of affecting your physical health too. I've always had anxiety issues. I even joked about being hypochondriac, but these issues became very real for me. Almost a year ago, after another night of sleeplessness and realizing I could no longer function, I told my husband I was making an appointment and going to the doctor to get some meds. I have always been one to encourage women who need help to deal with depression or anxiety to do what they need to do to get rid of the veil that blinds them and keeps them from enjoying life. It was incredibly difficult to look at myself and realize that I needed help too. It was humbling to "trade places" and be in the receiving end.

It is especially hard when you see your child being so susceptible to your emotional issues that you begin to see some of those (in a smaller scale) in them too. What a wakeup call!

Although I did not end up taking regular meds, I have changed some of my diet and I take a lot of supplements because my issues are related to some significant deficiencies in my body. Adrenal fatigue and hormonal imbalance do a lot to your brain's chemistry that prevent those neurotransmitters from firing properly. Of course there are spiritual issues going on too.

It has been a slow progress, and writing this makes me feel like a failure and a whiner. But it is the truth, and it is part of my brokenness.

I also know that I have been doing this in my own strength, keeping God at arms length. Recently, I have been convicted about my prayerlessness, and the fact that if I read my Bible 10 times last year I might be pushing it. Yes, I am the pastor's wife whose Bible gathered dust throughout 2012. Because for some reason some people expect a pastor's wife to be more spiritual than your average woman. I am not, I am so broken. And this year I have done a lot of asking Him, "Are you in this? Do you care? Why did you bring us here?"

But I know God is not done with me yet, He is not done with this little church either. He has not promised that things will get better, and I am not planning on that either, but He has promised to be with us. So this year, I am clinging on tight. This year, I am getting down on my knees because I desperately need Him.

My eyes will focus on Jesus because I know it is still going to be hard, but doing it on my own was no good. I just need Him.

Whatever His plan and purpose is, He has us here now. And even if there is a storm, His mighty hands hold me tight.

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(I am not looking for advice or suggestions).

The Significance of a New Year

This post was first published for ellenstumbo.com

Three years ago, the New Year became a significant celebration for my family. After seven weeks away from my family in Ukraine, I arrived with our new adopted daughter at the Minneapolis, MN airport. December 31st I was finally reunited with my girls and my husband, and we began the new year, January 1st, as a family of 5.

But the journey was not easy.

After many delays in Ukraine – including the quarantine in the country due to H1N1, or the “California flu” as they called it – Nina and I were stuck in the airport for 2 days due to a snow storm that shut down air travel for 2 days. By that point, I was already an emotional mess, not to mention the fact that I didn’t like my new child. The “fairytale” of adoption I had read so many times was not to be true for us, and I was barely holding it together.

A wheelchair waited for us to transport Nina as we made our way through the airport. I asked the man pushing it to, “Get me to my family as quickly as you can, please!” When we came out of the doors that led to baggage claim I spotted Andy waiting at the gate where the rest of our flight would be exiting from.

I took off running, yelling like a mad woman, “Andy! Honey! I am here!” I was probably flinging my arms violently as I waved and ran, and my voice was cracking a bit. The man pushing Nina did his best to keep up with me.

Ellie saw me first. She ran to me and gave me a big hug. It was so good to touch her again after 7 weeks away. Then Andy came to us and we clung together, sobbing, so relieved to be together once more.

Holding on tight, we are finally together again.

Ellie was excited to meet her new sister. She had seen pictures of Nina, and seen her through a computer screen, but nothing compared to seeing her face-to-face. “She is real!” She kept saying, “She is really real!

Family came to greet us at the airport. My parents met their new granddaughter, my sisters their new niece, and Andy’s sister and her family stopped by also to meet the new addition to the family.

Our homecoming was exhausting. Traveling for 2 days had Nina and I already stressed out, and the reunion was emotionally charged. Although the picture above shows a smiling face, she was nervous, unsure about this place where everyone talked funny. As we got in the car, Nina lost it as we were strapping her in her car seat. She yelled, screamed, kicked, and scratched her eyes. In minutes, once she realized she could not get out, she fell asleep as a defense mechanism.

We carried her into the hotel room, where our family planned to spend the first night together before stopping by my mom’s house and heading back home. She slept while I changed her into pajamas and changed her diaper.

I was so glad to be home with my family, so glad to finally have them in my arms. I already had a broken relationship with Nina, and we had not yet began doing life together as a family, but at least I was back home with my girls, my husband, and a great support system. After the emotional journey I had endured (we had endured), I was not sure that adopting was worth it. I wondered if we had made a huge mistake, I even wondered if I had ruined my family. Not to mention the fact that we had taken an older child, and an older child with cerebral palsy.

But those thoughts were put to the side. My youngest was sick and I was there to care for her. I was there to hold my oldest, and I had my husband by my side.

January 1st greeted us as a family of 5. We were together, and we had to make this work. Maybe we could have a fresh start, maybe there was hope for our family as we invited a new member in and while I tried to heal from the journey that had led us to this day.

She has a daddy

I did not expect the emotional journey of adoption to be as challenging and complex as it was. I thought it would be easy, that Nina would fit into our family right away and the transition would be fairly smooth. Somehow, I was led to believe that having difficulties in adoption was rare.

There was no fairytale.

It took more than a year for me to feel a real mother/daughter love for my child.

We struggled through many behaviors.

But this child has expanded my heart. She has taught me so much about what it means to love someone even when they are hard to love. She has challenged me to choose love, and to hold on to it regardless of my feelings, expectations, or desires.

And I can say with full confidence, that this child, my daughter, is a child of love. It has not been easy, but it has been good. And I would do this again, all over again if I had to. She is my very own.

So today I look back, with the significance of a New Year surrounding our family, because it has been 3 years since a little girl entered into our lives and came here to stay.

She has come a long, long way from that scared, self-injuring, frail and traumatized little girl. She is a courageous little girl, one I have the pleasure and honor to call my own. And I cannot wait for what the new year has in store for her.

Happy anniversary Nina, I love you more than you will ever know.

And if you are interested, go visit our adoption blog I kept during our time in Ukraine and some during the first year after we came home.

Disclosure: In that first year I was scared to be honest about my feelings or emotions. I felt like a failure as a mother and yes, even more so as a Christian, especially being a pastor’s wife. However, it is nice to have a chronicle of our journey before, during, and shortly after adoption.