Editor’s note: Today, I am very pleased to share a guest contribution by Kelly Doman. I believe what Kelly has shared here is crucial for our families, and request that you share her column broadly with your friends and loved ones. LMH
God, why did you do this to me?
Being a Catholic Christian mother of special needs children can sometimes make one think of Teresa of Avila saying “Lord, if this is the way you treat your friends, it’s no wonder you have so few of them!”
As the mother of a son with Asperger’s Syndrome and another who has been diagnosed with what I call “alphabet soup” (ADHD, ODD, SPD, GAD, PDD, PDQ, PDA and XYZ and so on) I have asked this question many times over the years. Parenting is tremendously difficult even without any extra challenges and the degree of difficulty is magnified a thousand-fold when hidden disabilities are present.
Oh, how often these children are seen by the neurotypically developing world as acting like ‘brats’ or ‘undisciplined wild beasts’ instead of being seen as neurologically impaired and developmentally disabled. It is aggravating and disheartening to strive constantly to teach these children and watch as their progress slows or they regress. It is even more maddening to feel as though the eyes of others are constantly on you with looks of “why doesn’t she control him?” or “I can see he obviously get no discipline” when you know that you have most certainly worked even harder than they at instilling values and proper behavior. Believe me when I say that God has heard “God, why did you do this to me?” amid my sobs of hopelessness and my irate tantrums more times than I care to admit. Like Teresa of Avila I have caught myself wondering why the Lord felt the need to treat someone He loves with such a heavy cross.
Thankfully, I can honestly can say that I have stopped asking the question because I have learned the answer through much prayer, Eucharistic Adoration, consecration to Mary, studying the lives of the Saints, reading about hidden disabilities as well as the wise counsel of my Bible Study friends.
I have come to realize, as all mothers of special kids eventually do, that none of this is really about me – it is about THEM. It’s not about God putting a burden on me or choosing for me to bear an extra large cross, it is about using me as a tool to nurture these extra-special members of his creation in a way that will glorify Him! In the words of Gwen Coniker, co-founder of the Apostolate for Family Consecration, when I remember that I am really only “God’s babysitter” and choose to do things according to how He wants them to be done then I no longer fret about how difficult mothering children with hidden disabilities truly is. I marvel at how God trusts me with them and believes in me and supports me in this difficult endeavor. If the Lord of all Creation thinks I am up to the task then I must be and choose accept the challenge even while pleading for the extra grace and mercy to do so!!
God He has seen some character traits in me that He knew would be necessary in order to raise these boys and their younger brother! I am stubborn and persistent, which has been critical in pushing for both diagnosis and treatment for these children. I am an intellectual who has researched their disorders and read so many books I could easily pass a graduate level exam on their disabilities! I have a jovial personality that can mesh well with special ed teachers and administrators smoothly even while I advocate and push hard for the services and accommodations my boys need. I am selfish enough to know that I must take some time for me so that I can regroup and relax in order to be strong enough for them. I am also a consecrated Catholic Christian who is so very grateful for God’s forgiveness amid my many sins so I would feel like a hypocrite in not forgiving my boys at least as many times as I have been forgiven.
In addition, the process of helping my boys to learn, grow and to navigate through the world has made me grow as a person in ways I never could have without them. My compassion for others has increased exponentially, my patience has grown by leaps and bounds (even though it’s no where near where it could be), my prayer life is stronger than ever, my faith grows ever deeper and my humble reliance on God’s will over my own is improving too.
In short, God knows what He’s doing as He prepares each of us for the work He needs for us to do in this world. I no longer beg the Almighty to remove disabilities or to make my life easier – I just ask for His grace to help me raise my sons into the men He needs them to be. I don’t know what special task God has in mind for these boys, but I do know that He has given them what they need to accomplish it – including what we see as a disability but God sees as a unique ability.
So, even on the most difficult days as a Mother of non-neurotypically developing sons, I no longer ask God “why did you do this to me?” Oh, sure, I still cry out to the Lord and sometimes express my anger or frustration of feeling abandoned by Him amid the strife but at my core I still know that God has made the right choice for all of us. These boys need me and the unique qualities I have while I need them and their uniqueness to teach me how to live more God’s way and not my own way. I’m kinda stubborn that way, I guess….but God loves me enough to help me to learn things even when I don’t want to. Hmmm….kinda like my kids…..
This poem, “Welcome to Holland”, is a widely published and translated piece which describes what it is like to raise a child with a disability. It was written by Emily Perl Kingsley, a member of the Sesame Street writing team since 1970, after her son Jason was born with Downs Syndrome in 1974. She and her husband continue to educate the public and develop resources to help Jason and other kids with special needs fulfill their potential. It so perfectly captures the feelings of those whose children are developing differently than others. It is a comfort to those who are on this path as well providing a clear picture to those who don’t yet understand what life on the special needs path is like.
“Welcome To Holland”
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning for a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You back your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!” you say. “What do you mean, Holland? I signed up for Italy! All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks, you must learn a whole new language, and you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy and less flashy than Italy, but after you’ve been there for awhile and you catch your breath, you look around and begin to notice that Holland has windmills; Holland has tulips; Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s where I was supposed to go. That’s what I had planned.” The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.
Another inspirational story for special Mothers who are gifted with children having Special Needs…
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”
“Forrest, Marjorie; daughter. Patron saint, Cecelia.”
“Rutledge, Carrie; twins. Patron saint, Matthew.”
Finally He passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.” The angel gasps – “selfishness? is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word'”. She will never consider a “step” ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.
“And what about her Patron saint?” asks the angel, his pen poised in mid-air.
God smiles, “A mirror will suffice.”
And finally, a website with wonderful perspective and insight on being a Mom of a diagnosed child AND a Christian who sees God’s beauty in everything – including the unique abilities of each child – http://chosenfamilies.org/
Kelly Doman is the wife of Gabe Doman and the mother of PJS – otherwise known as Paul, Jeff and Steve. A convert from the Presbyterian faith, she is now blessed to live as a Consecrated Catholic. The Domans are cooperators of the Apostolate for Family Consecration and especially love their summer retreat to Catholic Familyland’s FamilyFest in Bloomingdale, OH. Raising boys with special needs has deepened Kelly’s faith tremendously and has forced the surrender of her own stubborn will so that God’s will can prevail instead. In moments when she’s not actively engaged in duties as wife and mother, Kelly can be found on the organ bench as the Organist/Director of Music of a Catholic church in downtown Columbus Ohio.