Missing Special Needs

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I’m not going to lie. I never planned on being a special needs mom.  Heck, I never knew I was one until Lydia was 5 months old and that proverbial brick came flying at our faces on October 24, 2007.  It went something like this:

Genetic counselor:   “Your daughter has a rare genetic syndrome called 9q34.3.  She is one in about 50 that have this syndrome.”

My husband:  “50 in Wisconsin?  50 in the US?”

Genetic counselor:  “50 in the world sir.  In. the. World.”

My husband: “oh” (followed by a blank stare)

Genetic  counselor: “here is something to describe (a single piece of paper, mind you) that shares some of the characteristics your daughter may or may not have.  Universal characteristics are mild to severe mental retardation or impairment (yes, they said the R word then – I think it was to hit home the reality of it all) and hypotonia or low muscle tone.  Below is a list of other health conditions she may have or you may experience in the future with her but we can’t say for sure if these things will happen.  Only Lydia will tell us her future.”

I stared out that window in the room on that beautiful fall day long and hard.  I remember thinking “this is so not happening, this is a nightmare I will wake up from soon, right?  I thought something was wrong, that is why I asked the physicians to check into it but how could have my instincts been right?  My perfect, precious little girl who I was supposed to have has a rare genetic abnormality that will change our lives forever?  How can this be? “

But it was real.  Things changed for us immediately.  In and out of the emergency room we went.  Most times during the wee hours of the morning.  Hospital stays became our reality quickly.  Calling physicians like I was looking in the yellow pages, trying to determine who to see.   Therapies ensued and people were in and out of my home daily.  I was researching conditions, challenging physicians, crying when ‘promised’ milestones weren’t hit and rejoicing when ones were.  I was on a roller coaster not only in the special needs world but also in my various relationships that were there long before Lydia – my immediate family, my marriage, my friendships and my son’s life.

So, here is where I get loud and proud about this journey – being a special needs mom is not for the faint of heart.  When people would say to me “God chose you for a reason” I would cringe (most special moms cringe at that statement) but inside think quietly “you bet – I’m a tough ass momma (most days).”  Ok, ok, I’m patting myself on the back too much I know, but seriously – what special needs moms do every day is pure survival for themselves, their special child, possibly other children, their marriage and any other relationships.  Not everyone can handle this journey.  I know, I’ve met some.

Raising Lydia was never dull nor was each day the same.  Each day for 7 years was filled with something.  Even up until she died I was doing what I did – taking care of things.  I was driving up north with my mom on Friday and the caregiver for that Saturday called as she fell ill.  Lydia was extremely vulnerable to catching illnesses so of course I had to find someone else.  4 hours away I was making the calls trying desperately to find someone instead of me driving 4 hours home and cancelling my weekend which I would have done if needed to.  Now, that example is minor in the scheme of her entire life but what I’m saying is SPECIAL NEEDS WAS EVERY DAY.  Something occurred or needed to happen every day so Lydia had the best we could offer.

So, what I’m about to say – read clearly.  Don’t mistaken it for something it isn’t. And yes, it will be confusing.  You may never get it but I’m going to attempt to try.  My LIFE for 7 years was living and breathing my 3 children but especially being a special needs mom.  I found a huge purpose in all 3 of my kids but especially taking care of Lydia.  I was living on adrenalin 7 days a week, 24 hours a day for 7 full years.  My brain never got a chance to rest (fully) and when I was forced to shut down so did things for Lydia.

So, here is where it gets confusing.  I miss having that in my life because although it was challenging, it fulfilled me and I was saving her.  I educated, I cheered, I advocated, I made a difference for her and my family and that feeling was amazing. But in the same breath, while I miss her with all my heart and soul I don’t miss special needs.  I told you, confusing.  How could I be having all these emotions that seem so conflicting?  You are probably totally and utterly confused.

My life is now quiet.  My brain is no longer working wildly.  I am not in the shower thinking about how Lydia was acting at dinner the night before and if it could possibly be an illness and if so what I might deduct it is.  I no longer lay awake at night thinking about the notes from therapy and what we could do at home to enhance what they’ve worked on.  I no longer peruse IEP’s for hours on end making notes so that when she’s out of my site for those 7 hours at school she is working on things that will make a difference for her future.  The puzzle pieces for me to put together to keep my brain working are no longer there.  I miss being challenged but I don’t miss the special needs life.  I miss making a difference.  A big difference.

I don’t miss worrying about what special needs brought to our lives.  I worried about things like how I would change an older child in diapers in a restaurant?  I thought about how our home would always have a “child” in it and we would never be empty nesters.  I worried about who would babysit and change an 18 year olds diapers when we wanted to go out to eat with friends.  I had bigger worries too.  Who will take care of her when I am no longer here? Will she be in a group home? Will someone abuse her and I not know?  Will her brothers have to sacrifice their lives for hers?  Would her brother’s families be affected by their responsibility?

But in the same breath, I miss her.  I miss her like crazy.  In fact, it hurts worse now than it did when she first passed.  Call it shock, call it whatever – but it hurts worse now.  She really is gone.  She isn’t coming back.  I can’t hug her, I can’t kiss her like mad while she either sat there staring at me or moving her head toward me for more.  I can’t crawl into bed with her and snuggle close with her on her pillow and play with her on her iPad.  I can’t scream when a milestone is hit and then share it with the world.  It is all gone and while I don’t miss special needs, I miss her.

I changed the sub-title of my blog today. I think it fits more appropriately with our journey.  While I would have NEVER wished my daughter be special needs she was.  Just like every other mom and Dad out there we wanted a healthy baby girl that would have pigtails, talk back and eventually one we would walk down the aisle.  Not a child that that would endure over 25 hospitalizations, surgery after surgery, and seizure after seizure.  Not many ask for this life.  However, God had other plans for us and we  accepted it and I busted my ass to make sure she was the best she could be.  I was brought up no other way – NEVER GIVE UP.  Give me a challenge and I’ll break through it like a bull in a china shop.

Lydia gave me a lot of gifts.  So many blessings I would have probably never ever found had I not had her.  Though I don’t miss the special needs world – the diapers, the worry, the illnesses, the hospitalizations I miss what the special needs world gave me – strength, courage, a voice, an unconditional love, empathy for others, passion, understanding what is really important and a fight inside me otherwise hidden.  Without uttering a word she drove me to be someone I would have never otherwise become without her.

I miss that part of special needs and I’m so afraid without her I won’t uncover the depths of my character that may still be unveiled. I worry without her I will become lost in the shuffle of the world and get caught up in the useless drama I often ignored.  While no one wishes for special needs and I fought it emotionally for many years I can honestly say raising Lydia with her needs was one of the biggest blessings and gifts God gave me.  I don’t miss the struggles but I miss what it gave me -God gave me so much more than a child that needed me.   I hope someday he also helps me move on from my sadness and use my gifts to make a difference and do something great.  Even greater than raising my beautiful little girl.

5 thoughts on “Missing Special Needs

  1. Love your blog. It really hit home. I lost my daughter with special needs when she was 6 years old. You put my thoughts into words. So sorry for the lose of your little girl.

  2. Sally,
    Just keeping in touch and letting you know I think of you every day and even though my loss of my little girl was 45 yrs ago I still remember how very hard it was and how I thought it would never get easier. I lost my faith for a long time and couldn’t even bring myself to pray because I thought He didn’t answer anyway so what was the use. But now I can tell you it does get easier. The ache is always there and never goes away but heck we wouldn’t be Moms if it didn’t. But in time the happy memories and good times and sweet remembrances of times with her begin to outweigh the sadness. I pray each day for you and if there is ever anything I can do just let me know. I am always here for you and you are always in my thoughts.
    Sending hugs,
    Bonnie

  3. My heart goes out to you. I too got caught in the hospital revovling door. After my daughter was diagnosed, they urged me to go see a geneticist. I didn’t. At that time, I really felt like there was nothing new that he / she could tell me.

    Also, as a mom of a special needs child, I really cringe whenever someone says something like, “God only gives you what you can handle” or “you must be so strong.” The situation in and of itself makes ones strong.

    Keep writing. Hugs!

  4. Sally I know that your character will still grow, although I know it will never be the same. Never forget you will always be a part of the special needs community and our kleefstra family. I also know Lydia’s spirt will live through you as you advocate for other special children and her legacy will never be forgotten. I’ve always thought you would make a perfect speaker (teacher) for newly diagnosed special needs families. (Kind of show them the ropes, help with resources stress advocacy….etc…) similar to social work, but better. You are always in my thoughts and prayers !

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