Dear Mom of a Child with Special Needs,
I see your hurt; I know your pain. I know about the tears you cry when no one is watching, and the ones that slip by when you just can’t be strong anymore. I know about the frustrations you feel, the hopelessness that creeps in at times. I know how very much you love your child, how you would do anything for them, and yet, how you sometimes wish more than anything that things could be different.
There are days when you blame yourself, days when you wish you could go back in time and change something that would send you both on a different path. There are days when you daydream about what might have been if only . . . if only . . .
But you just can’t go there, Mama. You just can’t go there. That place is raw, and those dreams will only cut deeper. I know how hard it is to move forward. I know what it feels like to merely survive the days, but move forward you must. Your child needs you. Your family needs you.
And you, Mama, need to also see that you, too, have special needs. As a mother of a child with special needs, you have needs that must be tended as well, needs that must be embraced. You need for yourself what you give freely to your child each and every day: love, compassion, understanding, forgiveness, and hope.
You need to know that it’s okay to cry.
It’s okay to hurt and to mourn the dreams that may never be able to materialize. It’s okay to be weak, at times, and to allow yourself to feel. Walking in numbness will only harden you. Your child needs your love, and sometimes, it is in our weakest moments, that we can truly understand what they are going through. It is only because of hurt that we can ever know joy. It is only through rain that the flowers can grow.
Cry, Mama, if you must . . . and then move forward in hope, standing just a bit stronger than before.
You need to know that it’s okay if you mess up.
You will fail more times than you can possibly count. All parents do. We all flounder through this beautiful chaos of parenting, oftentimes, keeping our head just above the water. Sometimes we get it right; sometimes, we just don’t. And that’s okay.
It’s okay to mess up. It’s okay to get upset. It’s okay to sometimes say the wrong things at the wrong time. No, we mustn’t dismiss it all, and we surely should strive to grow, but there needs to be grace for those days that are far harder than anything we could have ever imagined. Parenting a child with special needs is hard work. It’s messy and confusing and downright overwhelming, and staying in self-condemnation mode is not good for anyone.
Forgive yourself, Mama, when you just don’t get it right. Leave it all at the foot of the cross and step up “with your feet fitted with the readiness that comes from the gospel of peace.” Let it go, and move forward. Give yourself grace.
You need to know that it’s okay to say no.
Not everyone will always understand, but you need to know that it’s okay to say no anyway. It’s okay to not go to that birthday party, where you know you’ll battle artificial dyes and a follow-up of meltdowns for the next five days. It’s okay to not go on every field trip. It’s okay to cut back on the extra-curricular activities. Your child doesn’t need to do it all and neither does your family.
There will be seasons where outings may be more manageable and vacations actually enjoyable. There will be times when your child responds a bit better to excess activity and times where managing the process won’t be as tiresome. Rest when you need to and take each season as it comes.
And if it just becomes too much, know that you can always say no, and that’s okay.
You need to know that it’s okay if your life looks different than you expected.
You may not be the soccer mom you thought you’d be or the dancer mom, surrounded by tutus and hair ribbons. Instead of baseball games and swim practices, you may find your weeks filled with appointments, appointments with the occupational therapist, the chiropractor, the homeopath, the holistic practitioner, the medical doctor, the list goes on.
Instead of trophies and plaques, you may find yourself celebrating ordinary milestones and just getting through the day without a meltdown. You may find contentment in a peaceful moment that comes when your child wraps his arms around your neck and says, “I love you.” You may find your smiles in the smallest of victories that many would not even notice.
Your days may, in many ways, be simpler. Your focus will be different. But you need to know that that’s okay, too. At the end of the day, it’s the relationships with those we love that truly matter. Spending your days with those you love is always a gift in and of itself.
Learn to see the beauty in what is, and embrace the celebrations that come–no matter what they look like on the outside.
You need to know that it’s okay to pave your own path.
As you navigate the rough waters of the special needs voyage, you will find yourself bombarded with opinions and thoughts from those who have no earthly idea what you are going through. Some will tell you to just “drug her,” and others will tell you that you’re probably not disciplining him enough. Some will think that if you were only more consistent, things would change, and others may judge you for hovering too much. The sad thing is, pretty soon, you may start to judge and second-guess yourself, too.
Letting someone else steer your ship will never get you where you need to be. Only you know what you go through each and every day. Only you know your child in a way that no one else can understand. I urge you to pray for wisdom and keep your eyes on God. The winds will blow from every direction, but the peace will come from knowing that God will see you through somehow, some way.
Embrace your purpose and your story and stand strong in faith.
You need to know that it’s okay to take a break.
Sometimes it’s hard to step away; it’s hard to ask for help. Maybe you feel like no one else can handle her the way you can; maybe you’re afraid to burden someone else and are worried that you won’t be able to repay the favor.
But Mama, you need a break, too. It’s okay to ask for help. It’s okay to step away for a bit to recharge.
Take a minute for prayer, some time for a quick walk, or a talk with a friend. Spend time in the Word; find joy in the midst of your circumstances. Explore that which is noble and good and lovely and energize your soul with truth. Your joy and love for life will be one of the greatest gifts you can ever give your child.
You need to know that it’s going to be okay.
Mama, I know you how very much you worry. You worry about what the future holds; you worry about things not getting better. You worry about finding the right therapist or the right supplement or the just-right protocol that will make everything better. You just want more than anything for things to be okay.
But, Mama, they are okay–just the way they are. It might be hard. It might be tough. It may be unlike anything you could have ever imagined, but it’s okay.
The Bible tells us not to worry about tomorrow, for in so doing, we give up a tiny bit of our present; we steal from today. Sadly, some give up far more in their fears and anxieties. We need to hold on to faith in those moments and trust that God is truly in control.
It’s going to be okay, Mama. It is okay.
And when you know this, when you truly hold on to this hope and give yourself the special things you need: the love, the compassion, the understanding and forgiveness, your child will have those things as well.
And he will know that it’s okay, too.
Standing with You,