My Heart Hurts

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My heart hurts today. The reality of my daughter's disability hit home at the IEP meeting a few days ago. Although the speech therapist pointed out many of her strengths and we talked about how cute she is, (blah, blah), her delays seemed to overshadow them. I mean, that's the point of the IEP, right? To create goals and objectives to help the child improve her weak areas. I don't like to talk about her delays to professionals, and I wish she didn't have any.

I'm worried about my daughter's future as she enters kindergarten next fall. Will she be able to keep up? Will she make friends and be invited over to their homes for playdates? Will teachers be proud of themselves because they were able to handle a kid with Down syndrome in their class, as if my girl is a prize for their career? Will there come a time when her school says she doesn't fit there anymore? So many worries. 

I know, I know, she brings many blessings and I should look at all of the positive aspects of the situation. I should go to the Bible to find comforting scriptures;and I will. I know that the Lord is my source of strength, and I need to rely on Him to help me through this. But I want to admit to someone out there that my heart hurts. I feel ashamed for the sadness that creeps in once in a while because I should feel grateful and blessed everyday.

I don't want to tell my family how I'm feeling because I know what they'll say — 'look at how far she has come,' 'we love her just the way she is,' 'God has a special purpose for her,' 'you are a wonderful mother for working with her so much,' 'God doesn't give you more than you can handle'...

But isn't it okay to say that my heart aches for the "normal-ness" that I dreamed about for her? Do any other parents struggle with this? I know we shouldn't dwell on it — but can't I just admit it to someone who might understand? I'm hoping that the sadness won't feel so strong if I get it off my chest, and hopefully see that I'm not the only one.

BTW — I HATE the term "high functioning"!!!!

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I read your post several times.  I poured myself a cup of coffee and read your words as if you and I were sitting together, having a coffee and talking this through.

I realize we don't know each other, but there is a virtual connection here, and your feelings resonate with some of mine. 

We have different kids, but I know that ache when the reality of your daughter's disability is staring you on the face, on paper, and the focus of a meeting.

I am not going to say that everything will be fine. Each year does hold surprises - some pleasant and some unpleasant.  I have been encouraged each year with my girls in their new therapy and school situations, but I have approached that year with trepidation and concern.  Thankfully, many of my worrries were assauged by caring therapists and new people who came to love my girls.

Please - don't be ashamed of those feelings.  I kind of laughed (with utmost sensitivity) when I read your words "I should go to the Bible... I know, I know, she brings many blessings..."  I have said those same words.  Sometimes the sarcasm is evident, but I share it only with those who know me well enough to not panic or feel awkward when I vent.

YES - you have to share those truthful feelings. Your ache is legitimate.  This is a grief process that lasts a lifetime.  The pain of the sorrow is more tangible at times and then fades, but it always there.

Sharing with your family can be awkward.  Just because they are family does not mean they will understand.  I have found that only a few of my family members "get it" so I also save those true feelings for a few good friends or a journal.  Because, let's be honest, sometimes, it helps to share it and move on.  If you share the feelings with the wrong person, they might get all worried for days, upset or bake you a casserole "to take the pain away."

One mom of older disabled children and I shared the real anger that comes at times - where we are almost angry with our child.  We know it's not their fault, but anger is the first emotion that surfaces, and it has to be recognized.

I found that for the first three or four years of my daughters' life, I had to confront those dreams, some intense anger and that sorrow.  Now that the girls are past three (Rachel is 6 and Janneke is 3), I find myself in a different space where I have less angst about the things they will not do.  That may change, so I am not saying that I've got it figured out.

It is a very legitimate feeling to struggle with the things your daughter is NOT.  At some point, you may even need to say them aloud to the wind or to your journal, so you can move forward and explore the things she IS.  I don't say this to be trite or flaky - it's about naming the pain and learning to make a "new normal" and be content with an uncertain future.

As for the statement "God doesn't give you more than you can handle" - I almost scream when people say this.  Ask them where in the Bible that is found.  It is a misinterpretation of words found in the NT....  Thanks for your words of comfort!?! 

God is alongside us, walking with us, grieving with us, and yes, He could fix everything, but we are trusting his infinite and ever-knowing will.  He will give us so much to handle that we are brought to our knees, crying to Him, asking Him to handle it.  When we begin to think that "I can do it; I can handle it", He reminds us - sometimes in difficult ways, sometimes in gentle ways, that life is about trusting Him and letting HIM handle it.

And He wants us to bring our true feelings to Him.  I know God's arms are so wide that I can beat His chest in my anger and in my grief.... We embrace and worship a God whose arms span beyond the width of our anger, bitterness and sadness.

Pay attention to your feelings.  I did go through some mild depression and anxiety issues for a time while struggling with this.  I did talk with a pastor about this, and he was great in listening.  He reminded my husband and I that we will need to wrestle with this spiritual calling from God, to be parents of children we did not anticipate.   I also began walking/running regularly to give my body a chance to physically sweat the angst out of my system.

As for your comment "as if my girl is a prize for their career" I also smiled.  We too, hear the comments about how much more loving and compassionate our older two girls must be because they have sisters with special needs - and then how much our disabled daughters can bless and affect others.  Yes...  there is some truth to that, but our kids are not tools.

On a side note, I follow Kelle Hampton's blog at times, a mom who has two daughters - the youngest has Down's Syndrome.  Sometimes her blog posts make me shake my head because everything appears cute and lovely.  She does attempt to write honestly, but there are other moms who have cautioned on trying to follow someone else's pattern.  This refers to someone like yourself who sees an internet mom making it work - and wondering why you can't make it work like her. You will find your own pattern that suits your family and your daughter.  You will continue to change and grow as she does.

You are right, she is a blessing.  She is created by God, and she is a part of His Kingdom.  In this day and age, there are so many more opportunities for acceptance and purpose with regards to living with a disability. 

That doesn't mean you won't worry.  You are the mom - that's what moms do. 

Give this worry, this anger, and this sorrow to God.  Find a way to name those feelings and ask Him to guide you through it.  Emailing, journaling, or shouting to the wind can help.  Ask God to provide people in your life that can handle your true feelings without judgement or casseroles.  He does provide.  He is faithful. 

Take it one day at a time.  If the heart hurts today, tuck away that IEP and take a walk with your kid.  Watch her take in the world and ask God to holler at your heart.

Does any of this make sense?  My coffee cup is empty, and I need make formula for the next 24 hours.  That and get groceries, fold the laundry.... and maybe yell at the wind again.

Peace to you.  Truly, may God give you peace.  Lamentations 3:19-23 - we will remember our sorrows, but we know that they will not consume us.  We have HOPE that God is faithful.

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Dear Sara, Bev, Wendy & Lorraine,

Thank you for your encouraging replies to my post.  It felt so good to be validated.  The Lord spoke to me after I posted it in 2 significant ways.  First of all, I saw my daughter praying to Him a few days later.  I wasn't close enough to hear the words because we were out in the yard at the time.  But I knew she was praying because she would talk as she bowed her head, folded her hands, then looked up to the sky, and repeated it again.  It touched me to witness her connection to Him, and helped me realize that she is ultimately His, not mine.  She's only 5 years old, yet she knows the Lord.  Amazing.

A few days after that,  my son's 4th grade class sang a song at a school performance that made me cry.  The song itself isn't very powerful (Three Little Birds - '"don't worry, 'bout a thing, cause every little thing, is gonna be alright"), but i was so moved that a group of 10 year olds could sing it so confidently.  I was reminded of the verse from Phil 4:6, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."   Also Matt 6:34 and Luke 12:22.  Seems silly, but that song was very comforting.

This experience got me thinking about sadness.  As I listed the important people in my life, I could name at least one experience that each of them has gone through that left a life long sadness (infertility, divorce, death of a spouse, betrayal of a spouse, illness, addiction).  wow.  I'm not the only one who carries pain.  Even Jesus, when Lazarus died.  It's a part of life that makes us real & human.  I'm so glad that I have the Lord to work through it with me, as opposed to going it alone. 

And now, I have you on-line friends to give me words of wisdom.  thank you for taking the time to write me back.  Let's keep in touch.

Leslie

Participant

You are definitely not alone in your ache for 'normal-ness." Our daughter is 26 and has a full and happy life, but I still ache. I read a book about grieving a long time ago that outlined the cycles of grief a person goes through. Typically you will experience every shade and aspect of grief the most intensely in the first 3 years, and after that they just recycle through your life with lesser intensity, but grief never, ever completely goes away.
Yes, there are many blessings and many things to give thanks for, but any parent of a child with a disability knows that somewhere deep down, there is there kernel of grief over what is and what is not.
Other than that, ditto to everything Sara has said. Strength to you and blessings.

Participant

thanks for this beautifully honest post.  I could resonate with so much of what you wrote.  My son (w/ disabilities) is now 19.  I find that the milestone years are often when the grief (for lack of a better word) will creep back over us.  This sounds like what you're experiencing as you look forward to your little girl going into kindergarten.  The excitement is there, yet it's somewhat tempered by the "yes, but..."  -- the knowing that things will always be a little different than what your original dreams were -- the worries over the "what ifs". 

Please don't be ashamed of the "sadness that creeps in once in awhile."  This is all part of the on-going grief you will experience throughout your daughter's life.  If you lost a child to death early in life, I don't imagine you would feel ashamed (even years and years later) when the grief would return from time to time because of a memory or a reminder of your loss.  In the birth of your daughter with Down's syndrome, you experienced a death to your dream family.  This doesn't take away from your joy and pride in your precious daughter!  But this grief will creep in from time to time.

And Sara, thanks for your amazing post as well!

I went through a cognitive-based therapy program several years ago that all but banned the word "but" in favor of "and". Something to think about...

Read Psalm 34 and know that God does not want you to feel shame. I can't say it any better than others already have, but it's definitely okay to not be okay with the way things are. And if you search the Psalms, you will not see any trace of the kind of cliches that are thrown at you. Remember, Job's friends offered those kind of trite sound bites, and God basically told them to shut up :-) 

My godson has had some health problems, and I learned quickly that not everybody "gets" it. I pray that you will find safe people (here *and* in "real" life) that you can share your heart with.

Thank you for the gift of your honesty.