Friday, August 26, 2011

The acceptance of love...Part One

Right now Rozie is building with Legos. Not the tiny ones not even the larger Duplos but the big Mega block size that are perfect for her little hands. This task and size are age appropriate for a two year old and i feel a smile spread on my face, a smile of acceptance. I accept you Rozie i feel like saying out loud. I accept you and your diagnosis. This is easy to do when she is performing at a level that i find appropriate.
Rozie has recently regressed in her walking. She was standing,then taking steps, then more steps, and it was all so exciting, until one day she sat down and went back to crawling and refuses to walk again.
I know this is a stage and next week she could be vertical again, but acceptance is a little harder when the task is so darn frustrating. She is two years old now and i have been carrying her for exactly two years, and often my back hurts, and my bones are still sore from the chemo. The walking milestone is eating up my acceptance.
I love my children. I love them with a deep strong fire that is often hard to put into words, but acceptance is another story. Just because we love our children does not mean we necessarily accept our sweet ones. It can be a hard mountain to climb because love is instinctual, but acceptance is learned.
Many of us think we accept, but its often the easy stuff we accept and we like to push the rest under the rug. This is our natural instinct, because like i said before 100% acceptance is learned not instinctual. Its easy to accept her when she is playing nicely, but when she refuses to walk on the outdoor playground and wants to crawl in the mulch my acceptance tolerance wears thin and i get a little mad at Down syndrome.
I know its silly because this scenario could be rewritten to fit many circumstances with and without a diagnosis. Its just easier to blame it on something, so i blame the extra chromosome. "Darn you chromosome just let her WALK"! Its really not so logical and like many times in my life i know i have to make a choice.
This morning i felt my frustration pot boiling over as Rozie crawled onto our deck. Inevitably when she crawls around on the deck she gets splinters from the flooring that needs a good sanding and a coat of paint. As i am pulling these splinters from her legs, and she is crying my frustration starts to grow and my acceptance starts to decrease.
This is not me and not the parent i want to be. I know if i was observing this situation from the outside i would have so many comments and changes for that parent. I need to breath and accept. Breath in and out, breath in and out , calm down and accept.
I thank Hashem everyday for my daughter, because of her i took off my dark shades i use to wear in life and look at our world with a new technicolor acceptance. I no longer see mental disorders, disabilities, and special needs. Only beautiful people and gorgeous Neshamas. I never had that vision before Rozie. I saw a lot differences, social lines, and everything was kind of clouded over with a fog like my glasses needed a good wiping. Its amazing that this one little chromosome can frustrated me and make me so happy all at the same time. I decided to let it go about the walking. Its just a vertical position and soon she will get there even if it takes months. Accepting my Rozie isn't just accepting her strengths its accepting the entire package including her struggles. Acceptance means i will open my arms wide to my daughter through her entire life, whether she gets married and lives independently, or if she grows up and still needs care and assistance. She is my daughter my baby, she is part of me. I love her with everything i have, and i also accept her not because she scores high on her evaluations, but because she is mine and i am hers. Acceptance is love and love is acceptance and i have a lot of room for both.


leah c said...

you put into words what so many of us special parents feel and go through so many times a day. my son ari who 8 has trisomy 9 mosaic- man that extra chromosome i tell you! the kids these day always want the designer "genes"!

punkdiddy said...

Thank you for writing what I feel . Thank you for these tears that cleanse my frustration and break open my heart. Thank you.

ckbrylliant said...

Crazy timing! Bridgie just had an "evaluation" and looking at the numbers, well, it got to me....I thought I was bigger than that, but it got me. Especially the 6-8 months score for expression. She is 19 months. I accept my Bridgie right where she is. It is often others who put limits and numbers and goal and expectations on us. I hear you in the back pain arena and carrying a baby for 2 years is tough. Thinking of you.

eggsinarow said...

Wow. What a beautiful post.
I think that identifying these emotions is such an important part of being a good parent...Good shabbos to you and yours!

Anna Theurer said...

Beautifully worded and know that you are not alone. I have felt the way you described many times and multiple times a day even. Love, yes, is instinctual. Acceptance is learned and some days, I believe I have mastered it, but then others. . . lovely photos :)

Jenny (also) said...

Gorgeous pictures even more beautiful feelings and struggles shared.

I think it so wonderful,and a major milestone, that you have made the choice to accept whatever Rozie's circumstances as an adult will be. We really don't know for all our children....

Melissa said...

You know what Sheva, I am at this point too. Usually I'm easy going and Down syndrome doesn't bother me but Jesenia is 19 months and she has taken 1-2 steps when she's close to something she can reach and she can go to town with a walker or if you hold her hands but she's not taking the independent steps and I find myself getting worried that she might not. I know she will but the waiting is hard.

Team Lando said...

A beautiful post. Thank you.

Anonymous said...

Wow - I so appreciate your honesty. And while I don't have a diagnosis to explain it away, I sure to struggle with the lack of acceptance sometimes (many times). I love how you put this - and hope it will open me up for my love, too. xo

Tzipporah said...

I totally agree with Leah C! You put into beautiful words what we all probably feel. I'm finding harder and harder to accept that Zalman is 4 and still doesn't speak. He has been trying so hard for years...Will he ever speak? He makes himself understood pretty darn well and understands everything that is said to him, but his vocabulary consists of maybe ten words and a few signs. It is funny though that he will walk up to a complete stanger and tell him a whole "story" in his "language" of sounds and hand motions. I usually can "translate" what he is trying to say. But oh how I can't wait for his real WORDS.

devorah said...

beautiful post- it can be hard to accept even when we love.

Anonymous said...


I love your blog and always find it inspirational. Just felt I would share a trick with you if its still needed that helped me when my daughter would get splinters from crawling on our unfinished porch. Put banana peels on her overnight for 1-2 nights. It works and its painless - Google it!

All the best to you and your family~

Jenny said...

This post was so beautiful to read. I have been struggling this past week with the acceptance of Ds and my son is almost two! Reading your blog helps me feel a peace and calm I dont often experience. Thank you :)