A 19 Year Old Revelation

I've been a parent of a child with Special Needs for almost 19 years, and I just had a revelation.  I recently realized that even though I thought I had it "all together", I really don't.  I have some scars that are almost 19 years old and I'm just now learning how they impact my life and my mental health.  

This revelation was uncovered recently during a conversation with my therapist.  I started seeing a therapist because of some external adversity that I've had to deal with for the last couple of years.  This external challenge was amplifying my anxiety and panic disorder, and my husband and I thought that therapy would be helpful.  This past session we started really diving into things that cause me anxiety. She had me think about the times I feel anxious and what causes my panic attacks.  While panic is often stirred by an immediate crisis, my anxiety can rise at anytime. It’s something I can not run from most days. (Note:  Anxiety and panic disorder could be a whole separate blog post. I'm not addressing that here, but you should know that this is more common than you may believe, and professional help can make a difference.)  

My therapist has spent time getting to know me and what parts of my life have been difficult.  In my last session, I began telling her about Ben.  I told her about his birth and the way I felt the months afterward, how I responded to his diagnosis and  how I respond to him now.  As I talked I could feel my anxiety rise.  I began to have heart palpitations, stomach ache, dizziness, shakiness, tears and shortness of breath.

After she helped me calm down and relax, she made a pretty stunning observation.  She said "I believe Benjamin is the cause of your permanent anxiety.  You have PTSD and I think you are still dealing with the grief this has caused in your life.”

I was shocked.  I am thankful for him and I clearly recognize how he has blessed my life and others.  I feel equipped to help other special needs parents deal with a new diagnosis.  I even write about all the ways that Ben has expanded my life.  But, my therapist thinks that I have unresolved issues?  How could this be? 

In January of 2002 the diagnosis for Ben was determined about a week after he was born.  As I look back I see how my anxiety grew to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find answers to how to help. I remember every day living with a tightness in my chest, not wanting to see friends or even get out of bed. Always exhausted, completely lost, and totally overwhelmed. There was lots and lots of crying. I had anger at God. I had at anger at Ben. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible. 

As the months past, I began to understand more about Down Syndrome. I began to meet people who had children with Down Syndrome older than Ben and I thought I was gaining some solid ground against my anxiety. Ben was making progress in  therapy, and was incredibly healthy for a child with Down Syndrome, but with that came the overwhelming realization that we are in this for the long haul. His disability is a long term diagnosis. 

Now as I sat in the therapy it began to make sense. I have a special needs son.  A son who makes me question my parenting, one who will need help to live alone, a son who will never truly leave the nest. He has trouble articulating his feelings at times. He needs help with some daily living tasks. I find myself thinking of ways to help him become more independent but immediately feel like a failure when I am not consistent. I constantly clench my teeth, at times my chest feels as if an elephant were standing on it, and my heart hurts at times for my son who I know has a long life battling odds. I feel like I live  in a constant state of “waiting for the other shoe to drop” and can at times  feel the emotional spiral. 

 I know many special needs parents struggle with anxiety. Learning that my anxiety is essentially post-traumatic stress disorder is helpful.  I know that it’s relentless and traumatic in nature.  But, I know where it comes from now.  This awareness will also help me manage my anxiety.  I know that I can "fix” some things for him, but I can't address it all.  

Being a parent of an individual with special needs feels like you have to give the absolute best of yourself every single day.  We want to do the best for our children and be "on top of our game".  But, we also have to recognize where we need support.  I have a great therapist now.  I have also joined Facebook groups to find parents who “walk my walk”.   I can find answers in these circles with comfort and no judgement. I have a “tribe” of friends who love me and are there for me when days are tough. I have a church who loves me and more importantly love and include Ben. I am praying over time I‘ll get closer to “fixing” my anxiety the best way I know how. 

As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies. You are important. Your anxiety is real. Everyone needs some help at times.  Make sure to ask for help and be willing to accept it. 

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

Spreading His Wings

On Sunday we lost Ben.

He had filled his backpack full of things he needed for camp and headed out the door on foot to try to make it to Rockbridge Camp. Out of all the things he has lost because of quarantine, this has been the hardest loss. 

Ben loves Rockbridge because it’s an incredible camp for students with disabilities. We found this camp through YoungLife’s Capernaum ministry. It’s an awesome ministry that has really blessed Ben and our family.

When Ben left that day, I am not sure what he was actually thinking. Was he really trying to get to camp by foot? Or, was he just dying to go somewhere alone? I know what I was thinking, and all of the scenarios in my head weren’t good. In the first 10 minutes I had already pictured him kidnapped and I was scared!

After we realized he was gone, we all headed out on a hunt for him. His brother and Dad were on bikes and I was in the car. Despite our effort to fan out and cover a wide area, he somehow managed to dodge all of us!

Thankfully we finally found him 2 neighborhoods away! Looking back, now what seemed like an eternity really wasn’t that long. He was probably only lost for 20-30 minutes. But, it felt much longer.

While he had a bag packed “for camp”, I think there was more to his escape. Ben is 18 and just like any teen he wants to be independent. That’s something we all want, right? Many kids look forward to being able to walk to a friend’s house alone. Or, the day they get a license and can drive off and be independent. Or, the real independence of living alone. 

And then there it is again —the heart pain. I have felt these pains before. The pain of wanting him to have something that I can’t always give him. Once again, having to let go of what I want and see what I have been given. This has been my heartache my entire life, and I think it will forever be there. You see, I don’t know if I can ever give him the independence he wants. Of course he can eventually take a walk on his own— but I don’t know that I can ever give him the independence he wants.

Special needs parenting is hard. I promise you, I don’t ever regret the gift God gave me. Any day of the week I can list a million blessings I have seen just for having him in my life. But, my heart still aches sometimes. Sometimes I look at him and see an 18 year old who has come so far and other times I see how far there is still to go. We can hide behind our smiles and hang on to each and every milestone we conquer but it doesn’t make any of it easy. Our lives will look different forever.

But on this Sunday I just prayed to have him home. The thought of losing him brought panic, because I don’t know what I would do without him. Even though he can often make my life a challenge, he also blesses me richly. He has taught me to trust God with so many of the unknowns with Ben’s life. And, by trusting Him there, I’ve learned how to trust Him better in other areas. 

Ben has helped me see that God gives me the strength to be the mother he needs. I know I’m not perfect. In fact, there are some days where I feel like Ben and want to pack my bags and leave as well. Those days typically come when I’m tired, exhausted or sad. But even when these days are hard I have hope. My Heavenly Father promises me that “those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” (Isaiah 40:31)

So as Ben starts to spread his wings and find some independence in his own life, I don’t have to fear. I can be hopeful because of God. And, I can spread my wings as well. 

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

To My First Born Son On His 18th Birthday

18 years.

18 years filled with laughter and love and sometimes heartache and tears. 18 years of watching every milestone and “checking it off” – feeling like we accomplished something. 18 years of watching some milestones pass by and realizing we still haven’t met them and dealing with the grief that these are the milestones that you may never meet.

But as I write, I realize you have risen above my expectations I had for you and I know you will continue to. It’s because even though there are many things we may have ahead to learn there are things you have taught me and others.

…you have taught me God’s sovereignty. From the moment I held you I knew He had a plan for your life. When we found out about the Down Syndrome, I didn’t understand why God had chosen this path for you or me. As the dust settled and the tears dried there was one passage I clung to. The passage is in John 9 when Jesus heals a blind man. Although I knew that “healing” was not the answer for a genetic condition. This scripture helped me find an answer for why God chose this path. Jesus’ answer is in verse 3. Jesus’ followers were baffled. Why was this boy born blind? Obviously someone sinned . But Jesus responds “he was born blind so that he could be used to show what great things God can do.” Now 18 years later I am able to see so many of these great things. I have learned it’s not my fault or that I’m being punished . These verses remind me that your disability is anything but that. The plan God had all along for you is a gift so that you can display the works of God through your life and your unprejudiced mind and heart.

… you have taught me patience. Every step of this journey together has been slow, every milestone, every word, every year of school, every IEP – a lesson in learning to be patient in God’s timing. While I’ve spent days, months and years waiting for each step, It causes me to think how patient God is with me. So many times it takes me so long to learn things that I’m sure God feels like he has tried to teach a million times over. You are my visible reminder that God brings beautiful blessings in His time if we just wait.

…you have taught me to laugh. You are silly. Always trying to make me laugh. And always laughing. You can make anyone laugh and you know how to laugh at yourself. And when I start to take life too seriously you are there to help remind me that life is too short not to laugh a little.

…you have taught me to see things through different eyes. To catch a glimpse of what really matters most. Not the little events of life but the way these events affect our soul and others. Your concern when others are sick, or sad. The way you never want to make anyone mad. The way you put others first. I often wonder what the world would be like if we all saw others through your eyes.

…you have taught me unconditional love. You give and accept love from others with no conditions. You share love so easily and I’ve seen you hurt because of the way you love someone or something so hard. Your heart is so big and filled with so much love for the people you know. You have taught me that loving is not about what we want others to be but about loving them as they are. It’s about loving me when I have a short temper or snap at you. It’s loving like Christ … not because of anything I could do but loving because that’s what you are.

I’m reminded of the old hymn, “Come Thou Fount,” it speaks in the second stanza of raising an Ebenezer. Strange language isn’t it? The prophet Samuel set up a stone after the LORD helped Israel win a great victory. This was not without repentance and seeking the LORD on Israel’s part. They had to put away their false gods and pray. The stone, named Ebenezer, commemorated that victory, for “Thus far the LORD has helped us” Whenever the Israelites would pass by the stone, they would remember what they were capable of, and how the LORD acted on their behalf.

So you my son are my true Ebenezer. You are the physical reminder of God’s faithfulness and goodness. In 18 years you have taught me all these lessons and more. You remind me daily what the Lord is capable of doing. And you show me daily that God has and is still continuing to teach me more about Himself through you.

So HAPPY 18TH BIRTHDAY Bub. You are so loved!

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion.