The thing about faith is that…it’s not transient. You either have it or you don’t. You don’t have to believe in the God I believe in to have faith either. You can have faith in lots of things–doctors, teachers, friends.

To have faith, you have to trust. A lot. Believe. A lot.

So where does that leave us, as special needs parents? We deal with so many things on a daily basis. We put our faith in things we can’t see–the future, IEP goals, health care reform (heh).

There’s no magical devotion or book or lesson that speaks to my situation.

No one can tell me to relax and have faith…because, you know what? I do have faith. I probably have more faith than a lot of people.

I believe with all my heart that when I take Jack to the doctor, I’m going to hear good news.

Does that happen? Usually not. OK, for real, it’s never happened.

But I believe. And I hope.

(And then I get sad. But, in the morning, I get up and hope and believe all over again)

I sobbed my way through Easter services at our church because the minister did a sermon on how when we get to heaven, our bodies will be whole and how kids with disabilities will be free from pain and sickness and all that… I did the ugly cry. Right there in my seat. THE ugly cry.

The thing is, I don’t really want to wait until my son dies to see him happy and whole.

I’d give my own life to see him that way now.

I understand that isn’t possible, but I’m trying to be transparent.

I don’t want to be patronized or told what a great mom I am.

Because…I’m not.

I hate being a special needs parent. Would I choose this for my child…the child that I prayed for? Hell no. But, it’s what I was given, and I may never know the reason behind it.

I don’t know that I’d be OK with that reason, truth be told.

The fact remains that I have faith. I believe with all my heart that I am who Jack need and that he has made my family stronger because he’s here. I believe that my son has changed many hearts. I believe that there are blessings for all of us if we look for them.

And I hope…Oh do I hope…

But mostly, I just love. I wake up to give kisses. I love through the aggression. I love through the pain of diagnoses. I love through the fear of the unknown future.

In the end, that’s what we’re all left with…faith and hope and love.

 

 

Email Author    |    Website About Heather P

Heather is a mom of two, wife, and nurse educator doing what she can to save the day! She lives in Orlando where she is routinely spotted driving while singing ABBA--all on a mission to advocate and educate!

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1 Jo April 20, 2012 at 2:56 pm

You write so heart felt. I am moved by this Heather. Thank you for sharing.
Peace

2 Heather P April 25, 2012 at 9:33 am

Smooches my Jo…xo

3 SoCoMom 4James April 21, 2012 at 11:53 pm

Thank you, for putting into words what I so often feel. Sending good thoughts and prayers to you, your Jack, and your whole family.

4 Heather P April 25, 2012 at 9:32 am

Thank you for caring…and for feeling. xo

5 Charity Deleon April 22, 2012 at 1:29 pm

You are so right. Without hope or faith I cannot imagine I would make it through each day of my life. Sending prayers for your family….I think God must say oh not her again, lol, just kidding. But I do not only pray to him but have conversations with him daily. Sometimes it’s so hard to focus on the good when there is so much bad but our faith pulls us through.

6 Heather P April 25, 2012 at 9:32 am

Charity,
I am a huge proponent of praying in the shower. Mostly because that’s the only time I’m ever alone. Well, sometimes…you know, if I shower when he’s asleep!

7 Villa Lyan April 23, 2012 at 5:40 pm

Have Certainty that Jack’s purpose here on earth with your family is so much more than his disability. You brought tears to my eyes, because your Soul did THE ugly cry. Trust that God does know best if only in that Jack did need to be born & better to you and your family than some other one that wouldn’t love him or worse would neglect him. God always does what is good and right. Trust that. Believe that. Have certainty that everything is as it should be for the good & right reason.

May the Light of god shine upon your family always. xo

8 Heather P April 25, 2012 at 9:31 am

Thank you…and smooch.

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