A Mother’s Love for a Special Needs Child

August 29, 2012 by  

A Mother’s Love Can’t Be Explained

A mother's love

We all know that Mother’s love their children, and we love them in a way we didn’t know we could, right?  But what about those children who have special needs? Some people who do not have special needs children can think that a parent might “love them less” because they aren’t perfect.  That they might “love them less” because they change the parents life style, change the life they pictured or believed they would have .  They think that they might “love them less” because they can’t leave their child with a sitter, or might not be able to go on vacations.  They think that the financial burden and loss of income because one parent might not be able to work outside the home, due to their child’s special needs… might cause them to “love them less”.  They think they might “love them less” because their child might not “fit in” with society, or cause trouble in public, or be difficult to even take in public because of all the needs they require.  They might even think that the parents would be “better off” if that child left this world early… so they can once again have a “normal life”.  Those “people” just have no idea. No way to understand the love a Mother has for her special needs child.

But guess what? … I think it somehow makes a mother’s love even stronger for a special needs child. Imagine a “child” being totally dependent on you for almost thirty years!  I have been a pediatric nurse for 30 years now. I have worked in children’s hospitals, Doctor’s offices and I’ve worked as a pediatric nurse case manager for a home health agency.  I have seen many many examples of how strong a mothers love can be, even for some children that do not respond to them… or respond in ways that others can recognize. For children that have cost them their careers, made them move into very small homes due to the financial crisis they now had to deal with, cost them their marriages because of the stress, cost them the life they wanted. I have seen so many cases… so many.

I recently had a cousin lose her daughter.  (pictured above) Her daughter, E….  was almost 30 years old.  She never spoke… ever ..except one time in church when she yelled “Amen” at the appropriate time. That was an awesome story to hear at her funeral!  They knew that E had something going on from the time she was a very small child. She was not hitting the normal milestones that other children her age were hitting. She didn’t talk, she had a strange gait to her walk, she would get angry easily (If I remember right. I did not live close to my cousin, so I didn’t know E very well… I only have a few memories with visits over the years). As she grew older, she required more and more care.  For the last several years she was unable to walk at all. She was not a small girl and she had to be lifted and completely cared for … by her parents.  My cousin and her husband did an unbelievable job taking care of her. Giving her every opportunity they could in order to help her, to make her life the best it could be for the body and the condition she endured.

a mother's love

 

They only discovered the actual diagnosis for what she had about two years ago. It is called   Pantothenate kinase-associated neurodegeneration (PKAN). They were told at that time that there had never been a case he knew of, where a child/adult lived to 30 years old.  E was 2 weeks away from her 30th birthday when she died.  She died at home, in her parents bed with her mom and dad with her.  They had been without electricity for a week prior to her death due to the terrible storms that went through at the end of June.  They had one room air conditioner with a generator and lived in that bedroom with her, to make her as comfortable as possible.

I went to her funeral. I had no idea how difficult it would be. Gut wrenching, fits perfectly. I have been to many funerals over my life time, and I have been to several funerals for children. But I’ve never had as hard a time as this one. (Other than my own Mom’s) . Maybe it was because I myself forgot the unbelievable amount of love a mother has for her child with special needs. The first strong tears came for me when I saw my Aunt 89 years old (Mom’s sister) ask to go up to the open casket again to see her. She just stroked her arm, touched her face and talked to her. My Aunt is the closest living relative I have, linked to my Mom. I miss my Mom so much and get to see my Aunt so little…I just adore her, and seeing her pain was SO hard.

After the service was over, they went to wheel the casket out… and all of a sudden all you could hear in this very quiet church, was my cousin, crying… no, sobbing for her daughter. The kind of crying that came deep deep from within her soul. Crying, like I’m not sure I’ve heard before. The pain she was suffering was incredible, pain like she had more than likely never experienced before. The paw bearers stopped and just stood there for about three or four minutes. The crying did not let up. There could not have been a single dry eye in the room hearing my cousin’s pain, the torture she was going through, knowing she would never see her daughter’s face again, never hold her or take care of her again. There is a piece of my cousin that left right then….a piece of her heart, her soul, that stayed with her daughter; stayed with her when they closed that casket, stayed with her as they wheeled her out of the church, stayed with her as she was lowered into the ground and was buried with her. She won’t get that piece of her heart, her soul back until she is back together with her in heaven.

 

a mother's love

It was right then, standing there crying myself; that I knew that a mothers love for a special needs child, could not be explained.  It was something that so many people might not understand…. but something so real. So precious. So wonderful. God is so gracious to give us what we need, give us the children that he wants us to be trusted with and to love. He could not have picked better parents for E, when he picked them. He knows the love a mother has for her child. Only God, and a mother herself can possibly know.

My love to you cuz, as you and your hubby heal and learn to live a life with your angel in heaven.

a mother's love

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Comments

10 Responses to “A Mother’s Love for a Special Needs Child”
  1. Shaunda Eppes says:

    I am the parent of a Special Needs Child and I truly felt moved by reading this. Sometimes I don’t think my heart is big enough to hold all the love I have for my son. And you have put into words what I have felt since my son was born. My prayers go out to your cousin and her family in hopes that she finds some peace that her precious child is with God.

  2. Sandy says:

    Thanks so much Shaunda for sharing that. Since I don’t have a special needs child of my own, I can’t fully understand the true depth…. I have just observed it time and time again. It’s nice to hear that what I wrote did touch something in a mother of a special needs child. Blessings to you and your son!

  3. Sandy, I am so, so sorry for your loss. It’s never easy to lose a loved one. I can’t even imagine the pain that your cousin is experiencing but it sounds like she has a relationship with the Lord and what a comfort He is in the face of every trial and loss. You’ve written a beautiful and touching tribute.

  4. Rosey says:

    They all have the same beautiful, happy smile going on: I love that! This was a great post, Sandy.

  5. Sandy says:

    Thanks Tonya. Yes, she has an awesome relationship with the Lord, as does the rest of my Mom’s side of the family. Appreciate the comments. :)

  6. Sandy says:

    Thanks Rosey!

  7. Dream Mom says:

    What an eloquent post regarding your cousin and her family. You can see the love she had for her daughter and you can see the joy in her daughter’s face. How beautiful.

    I too, am a mother of a severely disabled special needs child; he is 20 now. I can totally relate to this woman and the sacrifices she made for her child. I gave up my career, live with less, live in a small space but overall we’re very happy. We find the joy in our everyday lives. Our lives are filled with much love and my son is very happy. I tell everyone I know that he is “the best kid they ever made” and I mean it. I view them less as sacrifices but rather, equate myself with any other parent who wants the best for their child and is willing to do the best. Our “best” just isn’t as glamorous-much cooler to say we’re working an extra job to send our kid to an Ivy League college than it is to say talk about living on a lot less so you can take great care of your kid. Many people talk about the former, but the latter is never shared. Our life is good but different. It’s simple, honest and full of lots of love and lots of hard work. I cherish every day. Nice post Sandy. What a great way to honor your cousin.

  8. Sandy says:

    Thanks! Love what you had to say… about it not being a sacrifice. Thanks so much for taking the time to comment and hugs to you and your son!

  9. Oh Sandy. Thank you for this. Thank you for letting me know about this post. You know how close to home this hits right now. ((((HUGS))))

  10. Sandy says:

    You’re welcome Christine. I know you are battling with the same struggle yourself right now. Sorry for your loss… hugs back to you!

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