This is part three of the three-part foundation to my blog.
Click here to read part one.
Click here to read part two.
I cannot tell you how beautiful my daughter is. You have to see it for yourself. It's difficult because we always say, "how could she get any cuter," and then she goes and obtains more beauty than I can bear. We actually prayed for her to be a very attractive child. We asked God to grant her a beauty that made people drawn to her. It's a gift many people with down syndrome have and by golly my daughter OWNS it.
Life has been different than originally expected since our daughter has been born. We have four appointments every week to work toward milestone goals. Monday- speech therapy, Tuesday- developmental intervention, Friday- occupational therapy, Saturday- physical therapy. You might say, "that's a lot of stuff!" It can feel that way sometimes, but it's really a lot of intentional play with our sweet girl. Every child could benefit from their parents taking at least an hour a day to interact with them, teach them and invest in their well-being. That's what we do in our appointments and we take the skills we learn to incorporate them into our everyday life.
My daughter does not have the ability to learn like everyone else. She must be taught a lot of things that children her age have the ability to pick up naturally. Don't get me wrong. That cookie is sharp! There are a lot of things that she picks up on her own that we don't expect. However, there are things that we encourage her to do by playing and setting up scenarios for her. My husband has said that the way our therapists are teaching us to teach her seems very intuitive-- though, it takes time to begin thinking on these terms on your own.
It would be easy in the moment to sit on the couch and watch t.v. while our daughter grunts for her sippy cup, so then simply hand it to her because we know that's what she wants. However, that doesn't teach her much except that she can grunt for what she wants whenever she wants it and it will be handed to her. Instead, we can take a moment from our episode of Jeopardy and ask her what she wants. Our daughter knows how to request water, milk or juice. We can then get her a cup and fill it or point to a certain part of the room where she left it. These are skills she can take with her for many years. She isn't helpless.
All of us would have more work to do later on if we didn't teach our daughter these skills. And who wants a 6-year-old, teenager or adult who grunts for what they want-- leaving us guessing their desire. This is why we do it. My daughter deserves access to skills she can achieve and give her a better quality of life.
This is not the only way our lives are different than expected. We also have one of the most outgoing and loving toddlers. I kind of feel bad for the nervous, shy kids at the playground who backpedal as our daughter walks up to them with open arms. She can be a bit overwhelming for these sweet kiddos. My daughter also thinks she is in the middle of a pageant every time we go into a store. This child knows she is cute and is willing to say "Hi" to every passerby. This type of attitude has garnered much attention. My husband and I now affectionately call her our town's "sweetheart."
Many parents who have children with Down syndrome may do life a little (sometimes a lot) differently than us. Some have children with health concerns that affect their lives or put their child on a different schedule from us. Some have children with other diagnoses that affect how they do therapy. Some have kids who picked up big milestones before my daughter did and now have the ability to do things that she is still struggling with.
It is entirely too common to be asked the question, "Do they know what her abilities will be as an adult?" This questions bugs me more than I care to go into right here. I will address the best answer I know. Every child with a Down syndrome diagnosis is different. What works for one child may not work for another. What is easy for one child to achieve can be a huge task for another. Are there things that are common or even typical of our children? Yes. However, no two children are the same no matter their genetic makeup and it's the same with children with Down syndrome.
My life is definitely an unexpected adventure. I enjoy it, though. My daughter brings much more love, joy and wonder than complication, worry or sadness. I choose to live my life in the freedom of knowing my daughter will do much in her life even if society might not always see her the same way I do. If you are a parent with a new diagnosis, be encouraged that this is not the end, but rather the beginning of an unexpected life that unfolds in great beauty.
Saturday, October 17, 2015
Thursday, October 15, 2015
Unexpected Life
This is part two of a three-part foundation to my blog. Click to read part one.
My daughter has never had a day of life where she was unloved by her parents.
This is not always a reality for children with special needs. It hurts to know that, but I am eternally grateful for the grace God gave us in preparing our hearts for our child. No child becomes the person we expect; my husband and I had to realize this sooner than others.
I had been on bed rest for 6 weeks prior to my daughter's birth. The blood flow through my placenta was restricted and this caused my daughter to be very small. We were allowing her to bake in the oven a little longer before delivery. So, we waited. She was 10th percentile.... then 7th percentile.... then on our final growth scan at 36 weeks gestation, my daughter had fallen to the 3rd percentile in size for her age. An hour later, we were told we were going to deliver that morning.
I called my husband. He was an hour away getting ready for class at the university where he was studying. He rushed down and made it in the nick of time to be ready for her arrival.
Now, I hate blood. I don't care how many times people say, "just wait until you have your baby." As if having your health providers take blood from you regularly, give you shots and ultimately stab you with as many needles as possible during delivery somehow magically takes your uneasiness about foreign objects inserted into your body away. It doesn't always get easier. I simply learned to get through it. But, when you are having a C-section (or probably any type of surgery) they bring out all the guns. My first IV, my first catheter, my first anesthesia (aside from getting teeth pulled), my first MAJOR SURGERY-- I am pregnant again and I still cringe at the thought of all of this.
*note: C-sections aren't the worst thing in the world. In fact, some people had described their C-sections being far worse than my experience was. I actually thought recovery would be worse. Overall, I was not suffering much and my daughter was in the NICU for a month of my recovery anyway, so I had a pretty ideal situation. However, major surgery is major surgery and I'd rather my body recover over a couple days instead of a couple months post-partum.*
As I was lying on the table waiting to meet my sweet daughter, I tried to keep my mind off of what was going happening on the other side of the curtain. I stared at my husband. When she was born, he stood up to see her and quickly sat back down-- he had seen a little too much and was afraid to look any longer. my daughter was placed on my shoulder for a minute before being taken to the NICU. I kissed her sweet forehead. I still love to do that. I said goodbye for now and I was wheeled back to recovery.
Later, I told my husband that I thought my daughter looked like she had down syndrome. He said, "no, I'm pretty sure she just looks like a newborn." He really should trust my vast wisdom and intuition more :) Kidding of course, because he frequently does trust my instincts.
I got to see her a few hours later. She was beautiful! My husband and I often joke that she looked like an alien or a really small old man-- which she did. However, that does not mean she wasn't beautiful... just a little funny looking. This child was ours and we were honored to be her parents.
We were told that the hospital was going to do some genetic testing on Evelyn, but no one said what they were all suspecting. We were ok with that. We were wise enough to know that something was not as expected, but were patient with the staff to wait for their wisdom in timing to tell us. We asked every day if the results were back. I think it was about 3 days after our sweet daughter's birth that we found out she had a little something extra.
Our daughter had down syndrome. We were at a point where we had to evaluate expectations we had for our child's life. Not that you can plan their life for them, but we had begun to dream of the things that she might do in her life. We subconsciously pictured our child doing all sorts of things that we realized may not be in her future anymore. She may very well still be able to do many of those things, but we were mourning a loss of our expectations on her life. We all have expectations-- ALL of us, whether we care to admit it. My husband and I were at a place where we confronted the ones we had for our daughter earlier in her life than most other parents.
We sat with each other and cried as we looked at our sweet daughter. We took turns feeding her and loving her. She was ours to take care of. She was ours to love. We were getting used to this new life we were leading. A life that was going to be different than expected, but so much better too. As a friend once told me as I was finishing my senior year of college, "It's ok to mourn the passing of one stage of life as we enter another, but don't let it keep you from living it." This is similar to what my husband and I were going through. Life was different. It's ok to mourn that; fellow mom with a new diagnosis--cry over it, sister! However, our daughter was precious, beautiful and darling. We needed to mourn the expectations we had and take them off of our backs in order to love her better.
We still have high expectations for her life and we still believe she will live a meaningful, productive, adventurous life-- like all other humans with special needs can. That has never been a concern of ours. Sometimes your cake has delicious buttercream frosting, but sometimes your cake has decadent white chocolate cream cheese frosting. My daughter's life happens to make ours better despite being different.
My daughter has never had a day of life where she was unloved by her parents.
This is not always a reality for children with special needs. It hurts to know that, but I am eternally grateful for the grace God gave us in preparing our hearts for our child. No child becomes the person we expect; my husband and I had to realize this sooner than others.
I had been on bed rest for 6 weeks prior to my daughter's birth. The blood flow through my placenta was restricted and this caused my daughter to be very small. We were allowing her to bake in the oven a little longer before delivery. So, we waited. She was 10th percentile.... then 7th percentile.... then on our final growth scan at 36 weeks gestation, my daughter had fallen to the 3rd percentile in size for her age. An hour later, we were told we were going to deliver that morning.
I called my husband. He was an hour away getting ready for class at the university where he was studying. He rushed down and made it in the nick of time to be ready for her arrival.
Now, I hate blood. I don't care how many times people say, "just wait until you have your baby." As if having your health providers take blood from you regularly, give you shots and ultimately stab you with as many needles as possible during delivery somehow magically takes your uneasiness about foreign objects inserted into your body away. It doesn't always get easier. I simply learned to get through it. But, when you are having a C-section (or probably any type of surgery) they bring out all the guns. My first IV, my first catheter, my first anesthesia (aside from getting teeth pulled), my first MAJOR SURGERY-- I am pregnant again and I still cringe at the thought of all of this.
*note: C-sections aren't the worst thing in the world. In fact, some people had described their C-sections being far worse than my experience was. I actually thought recovery would be worse. Overall, I was not suffering much and my daughter was in the NICU for a month of my recovery anyway, so I had a pretty ideal situation. However, major surgery is major surgery and I'd rather my body recover over a couple days instead of a couple months post-partum.*
As I was lying on the table waiting to meet my sweet daughter, I tried to keep my mind off of what was going happening on the other side of the curtain. I stared at my husband. When she was born, he stood up to see her and quickly sat back down-- he had seen a little too much and was afraid to look any longer. my daughter was placed on my shoulder for a minute before being taken to the NICU. I kissed her sweet forehead. I still love to do that. I said goodbye for now and I was wheeled back to recovery.
Later, I told my husband that I thought my daughter looked like she had down syndrome. He said, "no, I'm pretty sure she just looks like a newborn." He really should trust my vast wisdom and intuition more :) Kidding of course, because he frequently does trust my instincts.
I got to see her a few hours later. She was beautiful! My husband and I often joke that she looked like an alien or a really small old man-- which she did. However, that does not mean she wasn't beautiful... just a little funny looking. This child was ours and we were honored to be her parents.
We were told that the hospital was going to do some genetic testing on Evelyn, but no one said what they were all suspecting. We were ok with that. We were wise enough to know that something was not as expected, but were patient with the staff to wait for their wisdom in timing to tell us. We asked every day if the results were back. I think it was about 3 days after our sweet daughter's birth that we found out she had a little something extra.
Our daughter had down syndrome. We were at a point where we had to evaluate expectations we had for our child's life. Not that you can plan their life for them, but we had begun to dream of the things that she might do in her life. We subconsciously pictured our child doing all sorts of things that we realized may not be in her future anymore. She may very well still be able to do many of those things, but we were mourning a loss of our expectations on her life. We all have expectations-- ALL of us, whether we care to admit it. My husband and I were at a place where we confronted the ones we had for our daughter earlier in her life than most other parents.
We sat with each other and cried as we looked at our sweet daughter. We took turns feeding her and loving her. She was ours to take care of. She was ours to love. We were getting used to this new life we were leading. A life that was going to be different than expected, but so much better too. As a friend once told me as I was finishing my senior year of college, "It's ok to mourn the passing of one stage of life as we enter another, but don't let it keep you from living it." This is similar to what my husband and I were going through. Life was different. It's ok to mourn that; fellow mom with a new diagnosis--cry over it, sister! However, our daughter was precious, beautiful and darling. We needed to mourn the expectations we had and take them off of our backs in order to love her better.
We still have high expectations for her life and we still believe she will live a meaningful, productive, adventurous life-- like all other humans with special needs can. That has never been a concern of ours. Sometimes your cake has delicious buttercream frosting, but sometimes your cake has decadent white chocolate cream cheese frosting. My daughter's life happens to make ours better despite being different.
Saturday, October 10, 2015
Unexpected Beauty
She was loved from the beginning.
Even when it was surreal that I was having a child, God knew exactly who she was and who she would be. He loved her with a love so strong. He told me five years before her birth that I would have a child like her. I was talking to a friend about his desire to adopt or have a child with Down Syndrome. I told him I did not know what I would do in that situation. I felt unprepared. God began to tell me His plans. The conversation was something like this:
This is my desire for you
No, God you're crazy. I can't do that.
I am
Even when it was surreal that I was having a child, God knew exactly who she was and who she would be. He loved her with a love so strong. He told me five years before her birth that I would have a child like her. I was talking to a friend about his desire to adopt or have a child with Down Syndrome. I told him I did not know what I would do in that situation. I felt unprepared. God began to tell me His plans. The conversation was something like this:
This is my desire for you
No, God you're crazy. I can't do that.
I am
I don't get it.
I started to ignore Him, but I don't think He had much more to say on the subject. His point was clear. I was going to be the mom of a child who would be considered special needs. This did not effect me. I did not think it was actually going to happen.
That was until I kept meeting people who were different from me. I'm not saying that they were all people with special needs, but I do know God was opening my heart to love all kinds of people. Often, these individuals were really just misunderstood people that many others brushed off. I remember a coworker of mine once told me that I attracted the most "interesting" people. I think he might have been relieved they always came to me for help, but I didn't mind. I had the coolest, weirdest, most interesting conversations with strangers and friends.
I fell in love with the idea of having a child who would be different from me too. They would be uninhibited by certain social norms (now, I'm not saying this will always be easy/good), love things that I often overlook and love people deeper than I can possibly love.
When my husband and I were dating, I told him that I was sure God was going to give me a child with special needs. I did not know what the diagnosis would be, but I was sure God had told me it was going to happen. You know what he said?! Ok. He wanted the same things I did! How great is that! So, we prepared our minds in prayer and conversation on the subject. Our hearts were aligned. In fact, one of the things that attracted me to this man was his kind heart toward people who were often misunderstood by others around us.
We had talked about adopting special needs one day, but I insisted we were going to have a biological child with special needs. It still felt unreal and I wanted it so badly that sometimes I thought I was just making up God's desire for me to have a child with special needs. Articles and information about special needs people kept surfacing and we were constantly learning more about this life God had planned for us.
When we found out we were pregnant two months after we got married. I was so distracted thinking about how unprepared we were to have a child that I did not even think about this desire again until the end of my pregnancy. Now, I am the mother of a lovely little girl who happens to have down syndrome. I wouldn't change that for anything.
Hello There
This is my attempt to put into writing the thoughts that I have wanted to share for a while now. I have been encouraged to do so on a number of occasions. People have often told me that I relate well to people in my writing and that it feels like a natural conversation when I write. Is this true?-- I don't know, but I will try to let it flow and I hope these posts bring you comfort, love and honesty.
If you are a parent of a child with Down syndrome, the family member of one, a friend of one, or a loving admirer of the beauty that is Down syndrome, you are invited to take this journey with me.
If you are a parent of a child with Down syndrome, the family member of one, a friend of one, or a loving admirer of the beauty that is Down syndrome, you are invited to take this journey with me.
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