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Lately Jordan has been very enamored of the Disney Princesses. She is definitely a girlie-girl, just going through the phases a few years late. She carries with her a princess story book we purchased some months ago. The book is full of dirt from her favorite play are outside the center. The fun, bright illustrations capture her attention. Most of all, she relates with the blonde princesses! Whenever she runs across Cinderella, Sleeping Beauty or Rapunzel she points to herself and her hair. She shakes her head vigorously to tell me that she is not Ariel or Jasmine or Mulan. I, however, do get her nod at looking like Belle!

This morning I decorated her bedroom space at the center with some vinyl princess clings. One of her staff commented that they’d get no peace this afternoon with Jordan wanting to show everyone her new items. Hopefully the princesses will remind her of her mom’s love…

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~ tlc

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As I was washing a bedroom wall today in preparation for a new paint job, I continued to ruminate on what may have contributed to the panic attack trigger. Since mid-July we have been in a remodeling upheaval on the whole upper floor of the house. We’ve refloored and repainted every room upstairs, as well as adding built-in bookcases and desks in the playroom for the boys’ maturing academic needs. Inch by inch our home is becoming a place that Jordan has not lived in nor left her mark upon.

These changes are good and definitely needed to take place. The playroom space is more cozy and useable now. But the reasons we built this home in the first place are disappearing. Jordan’s therapy swings no longer hang in the playroom. We patched holes in the drywall, painted the room, and placed new window coverings in Jordan’s old bedroom and moved Britten into it. The duck-and-flower trim that Aunt Dana painted for Jordan was plastered over. Thankfully the feces-stained carpet is gone; however, that is how she left her mark. If/when Jordan is able to spend the night with us she will do so in the old “baby” room. That is the room we are tackling now. The carpet where she spread a tube of Desetin and a bottle of baby powder is languishing in the land fill. Soon the melted paint on the wall where she sprayed a can of Lysol will be covered over. In my eyes she is disappearing from our home and new memories with her here are far and few between.

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Jackson and Britten have also been watching old home videos from our previous house. Jordan and Jackson are small with no Britten yet. Jackson loves the videos with his sissy. Jordan is still small and manageable. She and Jackson have a fun relationship. Jackson begs me to sit and watch the video with him, but it is excruciating for me. I was still naïve and hopeful at that time. So much pain has passed under the bridge since then that I hardly recognize myself. I want to go back to those days where I could still hold and care for my daughter.

Vacations and videos from the past five years are devoid of Jordan. We are making lots of new memories without her. Blake and I do plan to travel separately with her when she reaches a stable point, but that’s not the same as a yearly family vacation. Interacting with the boys is problematic for her, especially for Britten who has no memories of Jordan at home. His concept of “sister” is very loose. She’s somewhat of a baffling stranger to him.

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I think these incidents and items have affected my psyche in a way that I have not been consciously aware of. I try to keep my deep musings about Jordan to a minimum for sanity and happiness’ sake. We all face unimagined or unimaginable pain. We do our very best to keep it controlled and put on a happy face. Sometimes something out of the blue causes that mask to slip and reminds us how little control we really have over our lives. Pain is part of life whether we like it or not. It has changed me, some for the worse, some for the better.

I am grateful to have a space in which to examine my thoughts and feelings in the hopes of helping others who struggle with similar challenges. I often feel very much alone but know in truth that I am not. Everybody has a story.

~ tlc

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Last night I woke bolt upright at 3 a.m. from a sound sleep with one of the worst panic attacks I’ve ever had. And it has been several years since I’ve had one. I kind of thought I was losing my mind or having a heart attack or something. I immediately used my therapy tools to think back over the past few days to see what might have triggered something so strong.

On Saturday morning Blake and I visited with Jordan’s psychiatrist at the care center along with the nursing staff. We were told that Jordan’s negative behaviors have been increasing again and that she is just “really hard”. We hear this often from the center due to their high staff turnover rate. Jordan is also the perfect storm of physical ability and mental disability. She is strong and mobile and often lashes out due to her inability to communicate her increasingly complex thoughts and needs. We are aware of how difficult she can be; that’s why she does not live in our home. We see her twice a week and are in tune with her ups and downs.

Yesterday Blake asked how I was really feeling about things with Jordan. I told him I feel like I’m trapped in a box with no light, no air and no way out. This isn’t how I want things to be. And we have a lifetime ahead of us. I generally try to focus on one day at a time, but sometimes the long term just becomes overwhelming. The past 15 years have been a constant battle to keep our heads above water. We’re pretty sure about what we face for as long as Blake and I live.

I try so hard to keep this all buckled in and buckled down, but my body and my psyche carry the burden. My subconscious mind flashes out when it has had enough, even though I consciously try to keep control. I told Blake the other day that I think my broken heart broke my body. There is nothing to do but keep moving forward. I can’t sit down and take a break. It is difficult to describe the intense demands Jordan makes on our mother-daughter relationship all the while pushing me away. I yearn to shower on her all that I have in my heart but it will never be enough.

So, I redouble therapy, check my Prozac levels, and resole my combat boots. The disability trenches don’t allow for much weakness. Thank goodness for Boyz who help keep the broken heart from splintering apart.

~ tlc

What do all these women have in common?!!

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They are blonde female rockers that Jordan enjoys listening to! She is enamored with singers whom she feels look like her. Jordan loves music and she has pretty darned good taste in musicians. She also has a wide range of taste in genres, so we could also picture Dolly Parton, Taylor Swift and Carrie Underwood. As long as Jordan has her iPod shuffle she’s a happy girl!

~tlc

Can you believe she’s 15??!

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Cowabunga Bay

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Birthday girl

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What a fun, fun day…

~ tlc

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The week of Jordan’s birthday is always one of the most difficult of the year for me. My emotions herald the date long before my conscious mind recognizes it.

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The other day Blake and I were discussing actions that most people deem heroic or courageous or brave. I thought of all I accomplished before Jordan came along: college graduation; foreign mission; 3 internships, one abroad; moving to Washington, D.C. all by myself with no job. Those occasions took courage beyond what I thought I had. But they all pale in comparison with the mojo it takes to be Jordan’s mom. Blake pointed that out to me.

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Getting a call from the care center always sends my heart rate skyrocketing. A glance at that caller i.d. never brings good news. Jordan is not someone who calls to just chat.

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I love my daughter more than life itself, but I do not consider her disability a blessing. For those who may think I am too “whiny” or focus on the “negative” with this blog, I invite you to spend a week with Jordan without respite. Then look me straight in the eye and tell me the disability is a blessing. I choose to take the challenge of Jordan’s life because she is mine, but it is much more of a challenge than a blessing.

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However, I keep getting out of bed each morning and putting one foot in front of the other. I have not given up. I have the most wonderful husband and boys on the face of the planet. They give me reason to keep going when what I’d really rather do is crawl into a hole in the ground and pull the dirt in after me.

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And so, I am as heroic and courageous and brave as my daughter. My heart is permanently broken. My happiness will always be tinged with pain. My view of life will always be tainted by the struggles I’ve faced. Yet, I choose to be mostly happy. I chose to work to help those who face similar challenges. I want others to know they are not alone in their pain.

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Thank you for sharing this ride with me. Some things don’t always get better. Life changes and shapes all of us. Facing and accepting pain may be one of the most heroic acts of our lives.

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~ tlc

Can I just say how much I detest Jordan’s disability?!!

I s’pose I can ‘cuz this is my blog.

I miss my daughter!

My bucket is so empty that the rust spots have rust spots.  My therapist says I am the only one who can fill my empty bucket.  How?

I have a good life.  I cannot complain.  Yet…

I hurt.

My heart continues to ache more than I ever thought possible.

I try to stay positive and not burden anyone with my pain.  My only sanity sometimes is knowing that I am not the only mom out there with a heart that is duct taped together…

This video was created to honor mothers of children with Prader-Willi syndrome, but I think it fits all of us with special needs kids.

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Lots of love on Father’s Day to a Dear Dad-Dad who:

  • Lost his heart to his daughter the moment she was born
  • Wept like a child while filling out the paper work to commit that daughter to an institution
  • Will never see her graduate school or walk down the aisle yet celebrates every incremental improvement

    (We still don’t like living in the Tangent Universe…)

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Lots of love on Father’s Day to a Fabulous Father who:

  • Strives to give his sons the boundaries *and* the freedom they need to follow their dreams
  • Provides a wonderful example of honor and integrity for them to emulate
  • Likes to hang with their fun little selves!

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Lots of love on Father’s Day to a Peachy Pop who:

  • Even through the craze and haze of parenthood doesn’t know what he’d do without his kids

❤ tlc

As most of you are aware, I am no longer a religious person.  But this song touches me deeply as a mother who struggles as she watches her children try to find their wings.  I so desperately want to hang onto them and never let them go.  I especially feel this way about my daughter who is so vulnerable.

This beautiful song comes from a Disney animated film and is widely sung.  I have not seen the movie and did not realize it was a mother’s plea for her daughter until I played the piece on the piano.  Of course I wept.  My greatest desire for my children is that they are safe.

I pray you’ll be my eyes
And watch her where she goes
And help her to be wise
Help me to let go

Every mother’s prayer
Every child knows

Lead her to a place
Guide her with your grace
To a place where she’ll be safe

I pray she finds your light
And holds it in her heart
As darkness falls each night
Remind her where you are

Every mother’s prayer
Every child knows

Need to find a place
Guide her to a place
Give her faith so she’ll be safe

Lead her to a place
Guide her with your grace
To a place where she’ll be safe

~ tlc

Does anyone know where Jordan gets the genetic propensity for Angelina Jolie lips??! Women pay lots of money to get the full lips that Jordan comes by naturally. We are thinking it is a Christensen trait somewhere, but we’re not sure. We’d love any input!

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Here is her “cute” pose:

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~ tlc

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