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The Easy Life We Might Have Had Without Our Special Needs Daughter

The Easy Life We Might Have Had Without Our Special Needs Daughter By NotSoIdleHands.com

The first time we saw our soon-to-be youngest firecracker of a daughter Kira, we were in an old, WW1 era, run-down but fairly well kept up orphanage in Kaliningrad, Russia…..in November (very cold!). The staff had us wait in a small waiting room/office while they went and got her and brought her to us all bundled up. But one thing we didn’t know back then was how much impact that little bundle would have on our lives.

I know I’ve told and re-told many times about the story of how we came to adopt our youngest daughter and how our life was before and after. But sometimes, as things go, the mind tends to wander and thoughts turn to the “what if’s” of life.

Not too long ago, I had some “what if’s” floating around my head during a particularly hard day when my fibromyalgia was flaring up badly and Kira was having an especially hard time communicating her wants and needs with me and was in a bad mood to boot. Usually, I have lots of tricks up my sleeve that I’ve learned over the years for helping her on days like this, but this day was pushing my limits of “hanging in there” (insert poster of cute kitten hanging from a branch here). After putting us both in time-out, I laid on my bed and my mind made a mental list of those “what if’s.”

~ What if we hadn’t decided to adopt that tiny thing yelling at me from across the house (and making sure she was heard down the street, just in case)?

~ What if we didn’t have therapy appointments every week with a sprinkling of doctors, specialists, and teachers?

~ What if we weren’t always having to spend so much time and effort to monitor her weight and eating habits so closely since she’s so active and distracted that she forgets to eat…..and as an extra fun challenge, when we first brought her home, she stopped eating altogether?

~ What if we weren’t always having to learn about and how to handle different diagnoses that she presents with as she grows up. So far: Sensory Seeking  Disorder, ADHD, Hearing loss (that was cured with tubes), Fetal Alcohol Syndrome, Heart issues (since she was born with holes in her heart), Developmental Delay, and Speech Delay (due to Developmental Delay).

~ What if our 2 older daughters weren’t always having to help their little sister with everything,…..including using their sisterly influence to help get their smaller sister to potty train right before her 5th b-day.

~ What if we didn’t have her ever-constant chatter and jumping around noise in the background all.day.long.?

So that was my list of “what-if’s” as I lay there with all my back and shoulder muscles hurting and sore for no reason whatsoever and a migraine a-brewin’. I remember feeling so ashamed of those thoughts, but at the same time wondering how our lives might be different if we hadn’t gotten on that plane (twice) and stood in front of the Russian judge promising we could handle anything that came our way for this little one who had already survived being born in a shed…..in the middle of winter…..in Russia…..3 months too early…..with a heart defect.

In other words, our lives would be much easier for sure, right?

But easier, isn’t always easier….know what I mean? Let me explain:

As I laid there having a hard day and thinking the “what if’s,” reality started creeping in and the realization of how our life really has changed from the addition of this noisy, but teeny intruder. Well, here’s the truth of how things have changed for us since we’ve been lucky enough to have that sweet, passionate girl in our lives.

~What if we hadn’t decided to adopt that tiny thing yelling at me from across the house?

Well, for all the hard times like this one, there are many more great times that leave us with awesome family memories and smiles. She may be loud at times (ok, all the time, especially for how small she is) and she may tromp behind me in Sams Club growling fiercely because there are no samples to be sampled, but it’s because she has so much personality packed into that teeny body of hers and is constantly in a state of excitement and passion.

We have come to LOVE that passion of hers. Not that many people in this world of ours get to have passion like hers and along with that, a never-give-up attitude. It’s great because we can get her so excited to do just about anything….even how the light turns on by itself in the garage when she goes out to get in the car to go to school. She gets revved up to put her shoes on, to have 3 whole M&Ms to herself, and even to walk down to the mailbox 2 houses away. We love that huge personality that she brings in to our house and are excited to see what she will accomplish with it in the years ahead.

~What if we didn’t have therapy appointments every week with a sprinkling of doctors, specialists, and teachers?

I know it’s kind of hard to find the good that has come from this constant barrage of appointments with therapists and doctors, but when I try really, really hard I thought of this: We have met some of the greatest, hard-working, and genuinely caring people we ever knew existed! Kira’s preschool teachers are so sweet and patient and have taught her the coolest things (like putting on her own coat by laying it on the floor and diving in….Hallelujah!)

All of her Sunday school teachers continue to surprise us with the amount of love and understanding they show our sweet daughter. And all her therapists work so hard each week to figure out which things that will help her grow and develop so hopefully someday her development will “catch up” with her peers. The doctors and specialists we’ve met with along the way have been there for us so much to answer questions and help figure out the things she needs.

What would we have done without all the awesome people who have cared about our daughter just about as much as we do? We have truly been so fortunate to see that there are such giving people out there in this big, scary world and it gives us hope for the future and strength to keep facing these challenges head-on.

~What if we weren’t always having to spend so much time and effort to monitor her weight and eating habits so closely?

I know, another tough call, but this endless trial of keeping meat on her little bones has probably been the biggest thing to teach us about patience more than almost anything else. When she first came home, she was 15 months old and only 9 lbs and suddenly she didn’t want to take a bottle anymore. What!? Aren’t you hungry you tiny thing!?

For months she would refuse to eat or else take the bottle and then throw it all up later. We had appts with her pediatrician, but no one ever found a medical reason for this. Later, when she started eating solids, she would chew up all her food, but then hold it in her mouth and not swallow….again, no one could tell us why. Finally she got over those things, and will now eat an even wider variety of foods than her older sisters, but gets so distracted that we have to feed her still sometimes….just to make sure she gets enough.

When I think about all the things we’ve had to do to get food into her little tummy, I think about how stinking stubborn I must have been to need so many lessons in patience and understanding. This has especially been a really difficult trial and also one I’ve learned so much from…..

~What if we weren’t always having to learn about and handle different diagnoses that she presents with as she grows up?

Well, I guess this just shows that once you think you have it all figured out, life throws you a curve ball. And then another, and another, etc….. A long time after we brought Kira home, we wondered why she hadn’t started talking yet. After a few (more) visits to doctors and some hearing tests, we learned that she couldn’t hear very well and that her Eustachian tubes were so tiny that the normal fluids in her ears couldn’t drain like it should be doing. So basically, to her, everything sounded like it she was under water all the time and sounds weren’t clear. Luckily getting tubes (twice, so far) clears that problem up for her and now she can hear very well now.

This is just one of the many health issues this little one has had in her short life, and it seems like there’s a new issue to address every time we turn around. But if you think about it, everyone has trials in their life, and it’s how you face them that can make you a stronger person. There are constant issues that we need to address for our daughter and burying our heads in the sand is never an option. Yes, we can stay home and feel bad or angry for everything that happens, but then where would that leave us?

We also know that Kira will probably have a harder time than most because of her size, delays, or other things and we don’t want her to feel like less of a person. We hope we can teach her how to use the many strengths she does have. So the best way to do that, is to learn all we can about the things that try to hold her back and help her learn to make those her strengths too somehow.

~What if our 2 older daughters weren’t always having to help their little sister with everything?

I worry about this one sometimes. Are Maddie and Aislyn going to grow up resenting their little sister for all the times they were called on to help her out? Will they be mad because they get dragged to all her appointments too and have to sit in boring waiting rooms? Will they feel gypped because we have to give Kira more attention sometimes than they get?

Well, whenever I worry about this, I just think back to the day I got back from Russia with our new little package. Hubby and the girls were there waiting for me (after a super looooooong airplane ride) and the girls just fawned all over her instantly. They loved her so much that it scared her for awhile having so much in-your-face attention from these kids after being used to being alone in a crib all day with nothing but a binky for company (not exaggerating here folks). Those 2 may get frustrated with their little sibling from time-to-time, but whenever I see them take time to play with her or stop to teach her something, it makes me optimistic for their futures as awesome grown ups who have first-hand understanding and empathy for others because of their awesome little sister.

~What if we didn’t have her ever-constant chatter and jumping in the background all.day.long.?

Ok, so in case you don’t understand this one, let me fill you in. Ever since we walked in the door with her, Kira has found it necessary to fill every waking moment with the sound of her sweet voice. Whether it’s just chatter or yelling or random noises. She also needs to move around a lot since she has sensory seeking disorder and jumping in place is her go-to sensory activity. She will even just stand there and jump while she watches a favorite show on t.v.

When we found out about the hearing loss, we thought once she had her full hearing back, that would stop. Well, I think you can guess that it didn’t. I also get migraines a lot, so this was a challenge for me since too much noise would trigger them sometimes. I think this was another big lesson in patience for me (Man! I must be an impatient person to need all these lessons!).

Well, over the years, we have learned to embrace her cute chatter and redirect her when we can. And since we now have a huge basement….she now has her very own trampoline down there for all her jumping needs. Through many appointments with doctors and therapists, we now understand her need to chatter and move around constantly and it’s just part of her cute personality. Now, when I walk downstairs and hear her “narrating” her books to herself, it just makes me smile. Her need to wiggle and make noise is a part of who she is, and we wouldn’t change that for anything.

The Easy Life We Might Have Had Without Our Special Needs Daughter By NotSoIdleHands.com

Back to the present…..So Kira stopped yelling (probably bad words that I didn’t understand), and I was feeling more calm and in control. And now, as I sit her with tears streaming down my face at the thought of any possibility of not having this special kiddo in our lives, I know that we were not “cursed” with this child. But are really and truly blessed to have this spunky little person in our family.

I am constantly amazed at what she is able to accomplish with all of the challenges she has had in her young life and that gives me the strength to conquer any trials that come my way (or at the very least, muddle through them).  Having a child with special needs has not held our family back in any way, but has helped us all grow beyond what we maybe would have without her. More and more, I am able to see the little miracles in the world because of what my kiddos teach me and I am thankful for being able to witness those small moments. Our progress with her is never in huge leaps, but small steps. And when we sit down to really think about the “what if’s,” we count our lucky stars that our lives aren’t the easier ones they would have been without her in our family.

Have fun!

About Emily Mcdonald

Emily McDonald is the owner of Not So Idle Hands and lives in Colorado with her hot hubby and 3 cute daughters. When she's not battling ADHD, Fibro, or Migraines she loves to be downstairs playing with all her pretty crafty things making fun stuff. She also runs an awesome Etsy Shop by the same name where she gets to sell shiny supplies to make pretty stuff {check it out!}.

Comments

  1. Thank you so much for sharing this story. It is so important for us to remember the blessings and lessons we get in every challenge. You are an amazing women, with so much strength, patience, and love to share. Your family is lucky to have you as their mom!

    • Margaret~ Thanks so much for stopping by and for your sweet words. It’s always difficult to post about your personal feelings and I appreciate your kind thoughts about such a personal topic.

  2. Carol Hennessy says:

    The first time I met Kira, I was in a hospital waiting for Bill to come out of a very long and serious double surgery. It was very late at night when they finished with him and I could see him. As they were transferring him into his bed, my phone chimed with an incoming message. I opened a picture of Kira, with a sweet smile on her face. She was ready to co e home to America. I showed it to Bill and he smiled from ear to ear. I think,he formed a ‘bond with her that minute and has been happy to hear about her and see pictures of her as she grows. She made an otherwise awful day beautiful. That precious baby, who was coming to live with a family who would love her and who saved her from a terrible life, was a gift from God.

    • Hi Carol~ Oh my goodness, I don’t think I ever knew that! Thanks so much for sharing such a beautiful memory, it makes me so happy to hear about such a wonderful connection to such a wonderful couple! You guys are so very special to us always!

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  1. […] ways to help her learn things and accomplish her goals. She has, and will always have many more challenges than most, but I am thankful for the way my brain works because it helps me to be able to help […]

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