Do you have a special needs child in your life? Or does someone close to you? If so, you are gonna love today’s post!
Our extended family on both sides includes some special needs children and adults. My close friend Tammy adopted twin boys 15 years ago, one who has Down’s Syndrome along with other special needs. I often ponder how to best help people living day-to-day with this issue. Perhaps you do too.
Now, meet Connie!
When I gave my life to the Lord at the age of 19 I never could have imagined the direction He would take me in as I grew in my faith. I always wanted to be a wife and mother. I never expected that one day I would be raising a child with special needs.
This summer my husband, Mark, and I will be celebrating our 30th wedding anniversary. We are the parents of two great kids, John Mark (26) and Alyssa (24), and we live in Bolingbrook, a Chicago suburb, where Mark is a senior pastor.
Our son, John Mark, was born with a complex genetic birth defect called DiGeorge Syndrome that includes Spina Bifida and ulcerative colitis, along with many other physical and developmental challenges which have required a lifetime of medical care.
Connie, what is life like at your house these days?
John Mark and I spend most of our days together because he cannot be left alone due to a seizure disorder. Since he is an extrovert, he thrives on getting out of the house to go to Sunday services, youth group and any other church activities that are available. So, I am his personal chauffeur!
Right now we are very excited about a five week trip that we are taking ’out West’ this spring. After being in full time ministry for the past 26 years my husband is taking a sabbatical, which is extended time away from the daily demands of ministry and preaching. Our trip will include visiting family and friends, and taking our time exploring the western part of the US.
You spend a great deal of time raising a special needs child. What is important to remember when trying to accomplish that oft times difficult venture?
It is most important for me to remember who I am serving when I am caring for John Mark.
Four years ago, as I sat in the hospital at John Mark’s bedside, I cried as I tried to come to terms with a new medical diagnosis he had just received. As I prayed the Lord brought a picture to my mind. It was of two men standing next to each other talking, one I knew to be Jesus and the other was John Mark.
In that instant I understood that John Mark was Jesus’ trusted friend and that he had something special to do for the Lord. This picture spoke powerfully to me. It helped me to understand that John Mark has a specific God-given purpose to fulfill while he is on this earth.
So, this is the person I am caring for on a daily basis. I am here to help John Mark do the things God created him to do.
John Mark’s life doesn’t look the same as most 26 year olds. He will never go to college, never marry and have children, and is unable to work in a full time career, yet his life is just as valuable to the Lord as anyone else’s.
How can we help those who are in the midst of rearing special needs children? What are some practical things we can do to lighten their load?
Being the parent of a special needs child can be a very isolating experience, causing us to feel alone. We need you to reach out to us and let us know that you care.
One way that we have been cared for by our friends is when they have offered to spend time with John Mark so we can go out on a date, a blessing for us since so much of our time is spent with our son.
Don‘t be afraid to ask how things are going…and when we tell you, listen to what we have to say. When you listen you are allowing us to share our burdens and cares with you, and that is a tremendous blessing to us. And you don’t even have to give us any answers. We just need someone to hear what we are going through.
If you know that a parent has a child in the hospital look for practical ways to help, like offering to baby-sit for their other children, taking care of their pets, getting their mail, checking on their house, watering their garden. One year John Mark was in the hospital for 12 weeks, and we were blessed to have friends care for our dog while we were away.
Most importantly, pray for them. As a family, we have gone through some very difficult times while caring for John Mark. Just knowing that there were people praying for us really did make a difference to us.
How does your walk with Christ mesh with your quest to be an effective parent?
I am able to be an effective parent because of my relationship with Jesus. He sets the direction and gives purpose to my parenting. I could never do it without Him.
If I am not close to Him I am ineffective, because I just wind up trying to meet my family’s needs in my own strength and that never turns out well. So, I really have to take time for the Lord and make sure that I am hearing what He has to say to me in His Word.
Any encouragement you’d like to offer women out there who too are in the thick of raising a special needs child?
When things get tough, please don’t give up…on your child, your marriage, your life, your faith and most of all, don’t give up on God.
All that you are doing is totally worth it because you are caring for someone very special to Him. He knows how rough it can get sometimes, and He promises in His Word to never leave you alone to do it all by yourself.
This Bible passage has been a great encouragement to me during especially difficult times… I pray that it will be the same for you.
‘The God who made you in the first place, Jacob,
the One who got you started, Israel:
Don’t be afraid, I’ve redeemed you.
I’ve called your name. You’re mine.
When you’re in over your head, I’ll be there with you.
When you’re in rough waters, you will not go down.
When you’re between a rock and a hard place,
it won’t be a dead end
Because I am your God, your personal God,
The Holy One of Israel, your Savior.’
Isaiah 43:1-3 (The Message)
The very God who made you and your child knows you both personally, understands what you are facing and will be there to help you get through it…all very good reasons to keep going!
‘A Different Dream for My Child’, by Jolene Philo, is a very special devotional book written for parents of critically ill and chronically ill children. Her experiences with her own son’s early medical problems created in her a deep desire to reach out to others who face similar circumstances. She has created a website, Different Dream, that is a great resource for families.
Connie is giving away a copy of this book and including a $10 Starbucks card.
So, here is the question: Do you have a child or adult with special needs in your life, whether your own child, a relative or friend? How has knowing this person affected your life?
If you don’t have time to answer the question but would still like to be included in the drawing just say ‘I’m in!’. Winner announced Monday.