Special

Her smile is wide and when she laughs, it’s a wonderful mixture of melody and cheekiness. I don’t know the colour of cocoa butter apart from what I see on bottles of lotion, but if I was to describe her skin tone that is the colour I would choose. Her hair grows thick and deep black, and her eyes have a charming upward slant. Her pretty face is rounded off by a pointed chin and delicate ears. 

When she weeps dejectedly as a character on stage, when she dresses up in a cute outfit to sing at a Christian teens’ hangout, when she dribbles a soccer ball and scores into the net, when the swimming instructor asks me if I am interested in enrolling her in a professional team, when she edits videos for YouTube, when she is her fully functioning self, you will never guess the burden she carries.

When I took my daughter home from the orphanage, I learned quickly that this beautiful, sassy and funny child would need a little extra help to navigate life. On the surface, there was no physical indication of anything wrong. But I was soon schooled on the effects of early childhood development in the dehumanizing confines of an institution. Reading about the various disordered ways that children like her coped with life was one thing, witnessing it in real time was another. Explaining to the people in our lives that there was a reason for this and that behavior and meeting with skepticism and disbelief became a thorn in my flesh. 

And like the Apostle Paul with his thorn, I begged and pleaded for it to be removed. Like him, I too was promised grace, sufficient enough to walk this lonely journey.  

One day I read somewhere that every single child who has had their formative years in an institution like an orphanage, however comfortable, should be considered a special needs child. It was when I encountered this opinion that it finally became clear to me that using the conventional parenting approaches for Small daughter would not work.  Already, my family had felt the ripple effects of the challenges that she dealt with. I had changed the trajectory of my career. I would need to be home more, I could not risk other caregivers aggravating her pain and causing additional trauma. I would need a support network that understood what I was dealing with. Getting help would be expensive.

There were huge life decisions to take, as well as small daily ones about how we lived our lives. Trauma affects people in different ways, and I could never anticipate how its effects would show up next. I have come to learn that many of my girl’s physical ailments, that have taken us to the doctors over and over again until they throw up their hands in despair, have psychological roots. 

Last year, I found an online group of parents who care for children from hard places. They share so many experiences that we have gone through as a family that it felt like I was finally at home, among people who understood. However, some of the tales they told filled me with foreboding. Was there no hope that there would be a day when I could let down my guard and relax?

But that was the wrong way to look at it. When you have a physically disabled child, you do all you can to find ways that he can be accommodated. You seek out support and you change your life to make sure he is comfortable, and empowered to thrive, in this world. If I considered my child to have special needs, then I would have to do the same.

In many ways, Small daughter is a typical child and it is very difficult to convince the casual observer that she has special needs. And I cannot deny that sometimes I have entertained the general consensus that she is willful about her behaviors, probably has innate deficiencies in her character, or is possessed by evil forces that need to be prayed away. On the other hand, many have suggested that it is my poor parenting skill that is the cause of her challenging behaviors. Don’t forget that I am a single mother and my kind is bound to produce unhinged, ill mannered kids, right?

However, I cannot run away from the truth.  If I treat my special child as if she has been dealt the same deck of cards as everyone else, then I will not be motivated to learn how to help her and get the help that we both need.

Deciding to join a group of parents who were using a parenting approach that had been created to help children who had experienced traumatic events or circumstances was one of many steps I took to empower myself. I also ignored all those who mocked me for following “those westernized things” and stopped discussing our challenges with anyone who had no clue about mental health issues.

“If it was anyone else they would have given up on that child,” they said. 

So what then, I should lock her outside the gate and tell her to beat it?

I dealt with the challenge of finding psychiatric and psychological help for the whole family and sought out the medical specialists who understood the connection between my child’s illnesses and the difficulties of her early years. I pushed for trauma informed facilitators for the parenting classes I attended for at-risk children, many of them from the same orphanage I had found Small daughter.

I did all these things and we made a lot of progress. But the fiercest battle was with myself.

I let go of the fantasies I had had about parenting and embraced the reality of having a special needs child in my care. However, this was not a one time decision but one that had to be made on a daily basis, over and over again.

First of all, this is all extremely expensive. With the choice to take on self-employment and limit travel, the cost of medical and therapeutic care is way more than I can afford. Should I pay rent or pay for regular therapy? Should I pay school fees at a “normal” school or find an expensive school with small class sizes and a school counsellor? Should I make my daughter eat the affordable meals I prepare, or buy the often expensive foods that her body can tolerate?

Do I even have the energy to do this? With the constant need for stimulation, can I keep up with Small daughter and be on guard to prevent her from seeking dangerous thrills? Can I find, and fund, the sporting activities that use up her energizer-bunny drive? Am I able to enroll her in activities that exercise her intensely creative mind and let her practice her special gifting in music, drama and art?

A soul in pain is bound to hurt others.  How much understanding and forbearance, and determination not to take things personally, could the rest of the family muster when mysterious past traumas triggered her to cause very present pain? When her perception was colored by the dark clouds in her mind, when the fear of rejection and abandonment was a constant soul sucking threat, how would we be able to keep the peace?

Because at the end of the day, that is what it comes down to. Taking care of my special child requires a whole lot of peace.  The stressors are many and my high blood pressure is proof. The financial hardship. The scarcity of trauma informed mental health professionals. The difficulty of finding a school where she can actually learn without the harsh, demanding teachers triggering her traumas. The deep hurt of knowing that many in my circle do not consider her worth the effort.

The last crisis that came our way brought me to my knees. We were hit by a perfect storm of pandemic grief and illness, triggers from neighbourhood domestic violence, prolonged isolation and lack of structure from being out of school. Like a lot of people, we had thought that the Covid-19 pandemic would be a brief interruption to normal life.  How wrong we were!

The dragged out uncertainty of the pandemic was a last straw that broke the camel’s back. As I rushed Small daughter to the doctor every couple of days, as she went wild with terror and was involved in one accident after another, and as the youngest child began to show her own signs of mental distress, I knew it was time to take my parenting to another level.  This crisis would either break me or make me.

Jeremiah 29:13. You will seek me and find me when you seek me with all your heart.  Psalm 34:4. I sought the Lord and He answered me; He delivered me from all my fears.

I cried out to God, asking Him if I had made a mistake, taking home a child who required more than I could give. He told me, I placed you in each other’s paths, you were meant to be together. It was not a mistake. The steps of the righteous are ordered by the Lord. Was I not one of the righteous?

I sobbed in defeat, telling God that with no money to pay for all that we required, he was setting me up to fail. Why couldn’t He provide what we needed? He answered by showing me how the enterprise I had started was capable of providing all that we needed and more, if I would trust Him and let Him guide my  every step. He asked me why I kept unfavorably comparing myself to where others were, but could not see how resilient I was. Yes I had been battered but I was still standing. I would have to trust that God had always been standing with me and was not about to stop.

I spoke to Him in the wee hours of the morning, counting how many hours I had stayed awake, unable to sleep because of anxiety and ill health, unable to think properly and with no energy to carry out my responsibilities. He pointed to the gym a few minutes away and told me to sweat there often. He asked me why I was listening to all those podcasts about sleep hygiene, exercise and mindfulness if I was not going to follow their tips.

I showed Him how many doughnuts I ate, how I hid inside my bed and how my mind froze every time my special child struggled. I cried with frustration about how often these crises would make me shut down, unable to work or even get out of the house.  He told me He had not given me a spirit of fear but of power, of love and a sound mind. He said I had the power to overcome these urges to shut down, that I needed to practice what I knew, and keep getting up every time I fell. He would order my steps. His grace was abounding.

I told Him that I was lonely and that it was exhausting to constantly explain myself and my dilemmas. The shaming for my perceived failures and the lack of understanding pierced my heart. He wondered why I could not call on my truest friend, my guide and counsellor the Holy Spirit. When had I ever called for Him and He had not turned up? Why did I need other people to understand me when I was walking in obedience to My Creator?

When I said that I was paralyzed with anxiety about our future, He smiled. I know the plans I have for you. Why don’t you ask me what they are? Do you really think I am interested in your failure or lack, why would I be? You need to calm down and see Me as I am. Your Lord is the Prince of Peace, ask Him for peace and He will give it to you.

And so I did.

And it changed the game completely. I don’t need to carry out any feats of sacrificial stoicism to care for my children as a single parent, and especially to raise my special child. It does not matter how long it will take for respite to come or if it will come at all; there is no limit to how much good I can hope for, nor how much trouble I can handle.

I have been given peace, the kind that passes understanding. That sees me draw on abundant reserves of kindness and forbearance in the face of my child’s challenging behavior. That gives me the grace to offer the chance for another do-over no matter how many times my little one repeats the same mistake. The peace that allows me to stay loving, and keep no record of the times I am the target of her internal pain and deep, deep fear. The peace to not take things personally and go down the path of self-pity when our communication is riddled with misunderstanding. The peace that allows me to sense when she is seeking connection rather than lash out at her misguided attempts to get attention.

The peace to forgive myself when I fail her, when I fail all my children on this journey of learning. The peace to play the long game, knowing that until I leave this earth, everyday is one more chance to practice parenting with connection.

I now have the kind of peace that fills me with patience instead of foreboding about how long I can give my child the kind of support she needs. The peace that creates scaffolding to hold space for her until she masters a skill she needs to learn and not think of what she should be able to do at her age. The peace that has me waiting on the Lord because whatever circumstances I face, they too shall pass.

The Prince of Peace gives me the ability to breathe, to really breathe and be still. So I can tune out the noise and hear the quiet counsel of the Holy Spirit. So that I can raise my special child in the way God wants me to.    

2 thoughts on “Special

  1. THANK you for bearing your soul so eloquently! This was so very moving. While my story is not yours (for is not everyone’s story their own?), there are many, many things to which I can relate. My own Small daughter is now in her early 30’s… struggling with internal things so many can’t see. It has challenged me on every side of my faith over the years to navigate this journey with her. You described things so well. God prepares us to mother the children He gives us, regardless of how they arrive in our arms. This journey has certainly fine-tuned my walk of faith & deepened my relationship with the Holy Spirit. Yes! You said it so well, my sister. Jer 29:11-13 are pivotal scriptures in my life. God impressed upon me in the strongest way how it is the God-pursuing ones whose steps He orders… Yes, there comes a peace when we allow His voice to be the loudest, when we tune out the noise (even of our own making) and allow Him to guide us in parenting these beautiful, precious souls, helping them to set the table for God to work in them to walk out His purpose in their very valuable lives. Much love to you!

    Liked by 2 people

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