I thought about this right at the turn of the new year; the fact that a year has passed since Tyley Sue was diagnosed with the 11p14.1 deletion. This morning I drove to work, like I do every day, and I passed by the service road that I turned off on about a year ago when Dr. Han called me. Dr. Han is the doctor from NIH that was able to really answer our questions, she's the one working on a cure, and she's the one with the brains of the operation for us! She called me about a year ago right after I left work. When I got the call I was just about to hit the interstate, and instead, I turned off on a service road and parked in a hotel parking lot. I thought it would be a quick talk, but I sat there for over an hour while she poured knowledge into me and allowed me to ask all the questions I wanted. She was extremely patient and kind as she broke some of the most heart breaking news to me. At the end of our conversation, she invited us to come to the NIH for testing so she could further confirm some things for us.
Once we ended our conversation, I continued to sit in that hotel parking lot and I cried. I was so scared and there was so much unknown ahead, but at the same time, I knew enough to completely wreck my world. So, today, as I passed that service road, a little deja vu hit me. I felt a tinge of sadness as tears welled up in my eyes.
A year has passed, and not much has changed in regards to Tyley Sue's progression. Now, please don't think I take for granted the small advances she has made, because I most certainly do not. Looking back over the past year here are some of the things that she's gained. She is using her PECS book to communicate some. It's very helpful and I think gives her a great sense of accomplishment when she's able to effectively communicate her needs to us. She is now sleeping wonderfully thanks to a weighted blanket and some essential oils. She loves going to school and I think her attention span has improved as a result of it. She does seem to follow some of our instructions better.
As I listed those things that she's doing well at, I also can't help but think of the things she lost and never regained. Those are the things that bother me the most. She used to count to 10, alternating every other number with us, she used to say several different words like "sassy", "what a daddy", "apple", "hey girl" and "happy". There were some others that I know I've forgotten too. I just thought she was being stubborn in the beginning and that she would say them when she wanted to, but that never happened. A year later and she still hasn't gained those words back that she used to say.
Over the past year I've watched Elijah surpass her in many ways. He feeds himself with a spoon and fork. He says "mama" "dada" "bottle" "snack" "nose" "'Lijah" "cheese" "shoes" "go" "bye bye" and "hey". He plays appropriately with his toys. There are moments where I see him easily master a task that I've pushed her on for a long time and she still can't even attempt to do it on her own.
People say you can't compare one kid to another, but it's impossible not to. It doesn't mean I love her any less or think differently of her because she can't do the things Elijah does, but it's just human nature to see the two and compare. Tyley Sue is unique and Elijah is unique, each in their own ways.
I've tried to think of how things have changed for Tyler and I over the past year. I think we've both come to terms more with how our life is different from our friends and families lives. We know there are limits to what we can and can't do with Tyley Sue. We've learned how to really enjoy the small advances and how to enjoy Elijah's growth without feeling sad for Tyley Sue or ourselves. I love seeing Elijah progress and learn. It's a whole new experience for me. We've also learned that some people can say some really hurtful things, but the people that love and care and encourage far outweigh the few negative comments over this past year. We have moments where we still question the future and wonder what it holds for Tyley Sue and us all. I still have moments of paralyzing fear over the "what ifs" of her diagnosis since we don't know anyone else with this. But, I have many more moments of peace and acceptance while I try to just worry with today and not the tomorrows.
Life sure has changed from January 2014 to January 2015. We are starting this year off with an appointment this Friday to see Dr. Han again. She's moved from the NIH in Maryland to LeBonheur in Memphis, TN which is a huge blessing for us! So, we will head to Memphis 6 am this Friday to
meet with Dr. Han and discuss Tyley Sue's current status and see if there are any suggestions for us. I'm also curious to know how the research is going on her end and with the team at the NIH. I would ask that you all continue to lift our family up in prayer. We will also be going back to the cardiologist in a couple of months to check back on that abnormality with her heart and see if anything has changed there.
I've said it before and I will say it again; I will be forever thankful that God saw fit for me to be the mother to Tyley Sue. Knowing he orchestrated her birth with another woman and lined things up just right so Tyler and I would become her parents still amazes me. Tyley Sue is literally one in a million and we have been allowed to be a part of this story. He's used us to minister to others and I'm still able to share our story with new people. I pray that He will continue to use us to reach out to others and allow us opportunities to share what He's done and what He's doing in our lives!
Wednesday, January 14, 2015
Thursday, October 30, 2014
Sneaky Grief...Comes up when you least expect it!
Yesterday we had our Trunk or Treat at church. The moments prior to the Trunk or Treat were a little hectic as we quickly realized that Tyley Sue's dress was entirely too big for her little body! So, I got out some scissors, cut a chunk out of the back of the dress and safety pinned it together! I put a cardigan over it, so no one could tell the difference and I hurried out the door with the Cowardly Lion and Dorothy in tow. There were a lot of people there (really there were a lot of girls dressed like Elsa) which typically doesn't bode too well for Tyley Sue. She usually kind of shuts down in large crowds with lots of noise and just takes it all in. After walking around with me and my parents and eating a hot dog and riding the swings, I decided that maybe, just maybe, she would walk around with her little pumpkin bucket and let people give her some candy. We made it down to 4 other trunks when she started pitching a fit and "melting" as I like to call it, because I was trying to help her hold her pumpkin and because I wouldn't let her dig into the bins of candy people had, so we decided to quit as she started repeating "ma, ma, ma, ma" to me.....which in Tyley Sue's world means she wants her milk. So, I made my way back to our trunk, sat in the chair and rocked her with her "ma". We were surrounded by people; trick or treaters, music, talking, playing, a loud hot air balloon; but suddenly everything was quiet in my head and all I could think about was how different my life is and my child is from every other three and a half year old there.
Typically, I'm so busy with the day to day tasks of life, that I don't slow down enough to think about how different things are. For my family all of the little things that make Tyley Sue, Tyley Sue, have become our normal. My non-verbal kid uses a picture book to point out what she wants *sometimes*. Other times she just melts down because she can't figure out what she wants, much less commuicate it to us in any way. She sits at the dinner table *sometimes* and eats with her hands, never with a spoon or fork, not knowing when she has too much in her mouth and continues to shove food in despite there being no more room to even chew what she has. Our mornings start a lot with crying from transitioning from sleeping to awake status, and she can't hardly function until she's had adequate time to rock in the chair while being snuggled and drinking her "ma". The thing that happens daily at our house and also one of her favorite things to do, is run around with a wash cloth in her mouth, chewing on it constantly, while watching cartoons as she jumps up and down and occasionally bangs her head on the bed or couch(thankfully she chooses soft surfaces to do this on). When bed time closes in on us, we go through a nightly routine of putting on her pajamas, placing essential oils on her neck an hour before bed and diffusing oils in her room, and then warming her weighted blanket in the dryer for 15 minutes just prior to placing her in her bed. I honestly can't paint an adequate picture of what life is like with my girl, but I can promise you that it is a lot different than what most parents of three and a half year olds are doing.
I wouldn't trade it for anything though and I don't want any other child but Tyley Sue, however, last night for just a moment, I let my mind wander and that part I keep turned off most of the time, clicked on, and the part of my heart that I keep under locks in public, broke free for a second, and I thought about what life would be like if she didn't have so many special needs and quirks. I wondered how fun it would be to walk along with her and trick or treat as she really enjoyed what we were doing. I looked at my friend's two,three, and four year olds and wondered what life would be like if she were like them. I wondered what emotions I would feel if she told me that she loved me, said mommy, or daddy.
I find it strange that I wonder about this imaginary version of my daughter, yet I never wonder about an imaginary version of Elijah. I guess this is just one of those things that we go through with special needs children, and I wonder if it isn't really just a manifestation of the continued cycle of grief we go through for the death of the child we imagined we would have.
Now, I don't want you to think that I'm sad with what I got; because I'm definitely not. I love her more fiercely than I ever thought possible and to me she is perfectly imperfect, like I've said before. She fills my heart with so much love and happiness. She fill my arms and my lap with the best hugs and snuggles I could imagine. Rocking her as her chocolate brown eyes look deeply into mine, is one of my favorite things about my sweet Sue Sue. I guess, there are just moments, and thank God they are fleeting, where I just can't help but wonder who she might be if that little piece of the chromosome appeared in the right spot. As I sat in the dark with her head laid on my shoulder I started to tear up at all of the thoughts flooding my mind when my mom popped up next to me and asked where my dad was. The moment passed, the "ma" ran out, and Tyley Sue was soothed and rejuvenated by the few moments of rocking and drinking she had.
She then sat in my lap laughing at me because I starting coughing after she finished her milk. She thinks it hilarious when anyone coughs or sneezes, which is funny in itself to me that she finds it so funny!! There was a time when we longed to hear Tyley Sue laugh. She didn't really start laughing at things until over the past year, and now she only laughs infrequently and at the most ridiculous and inappropriate things! But, as she laughed last night, my heart was filled, and that little part that comes out every now and again, the fears, doubts, concerns, wishes, sadness, grief; was put away and locked back up. I moved on, letting it all go (I channeled Elsa from Frozen since there were so many there ha ha ha), because that is just what you do to keep it all together for yourself and your family.
I think God knew in that moment I needed to hear her laugh and I needed to see her really enjoy the night, even if her way of enjoying it was different from the ways of other children. Her sense of enjoyment came at that moment from simply being rocked and held and soothed and then being allowed to run, jump, and clap for herself. Her enjoyment didn't come from the candy, the costumes, the decorations, the jumpy houses, or hot air balloon; and that's okay and it's what makes her unique and special to me and to most others who know her. I'm thankful for her and that God allowed me to be her mother because this little girl sure is teaching me a lot!!
Typically, I'm so busy with the day to day tasks of life, that I don't slow down enough to think about how different things are. For my family all of the little things that make Tyley Sue, Tyley Sue, have become our normal. My non-verbal kid uses a picture book to point out what she wants *sometimes*. Other times she just melts down because she can't figure out what she wants, much less commuicate it to us in any way. She sits at the dinner table *sometimes* and eats with her hands, never with a spoon or fork, not knowing when she has too much in her mouth and continues to shove food in despite there being no more room to even chew what she has. Our mornings start a lot with crying from transitioning from sleeping to awake status, and she can't hardly function until she's had adequate time to rock in the chair while being snuggled and drinking her "ma". The thing that happens daily at our house and also one of her favorite things to do, is run around with a wash cloth in her mouth, chewing on it constantly, while watching cartoons as she jumps up and down and occasionally bangs her head on the bed or couch(thankfully she chooses soft surfaces to do this on). When bed time closes in on us, we go through a nightly routine of putting on her pajamas, placing essential oils on her neck an hour before bed and diffusing oils in her room, and then warming her weighted blanket in the dryer for 15 minutes just prior to placing her in her bed. I honestly can't paint an adequate picture of what life is like with my girl, but I can promise you that it is a lot different than what most parents of three and a half year olds are doing.
I wouldn't trade it for anything though and I don't want any other child but Tyley Sue, however, last night for just a moment, I let my mind wander and that part I keep turned off most of the time, clicked on, and the part of my heart that I keep under locks in public, broke free for a second, and I thought about what life would be like if she didn't have so many special needs and quirks. I wondered how fun it would be to walk along with her and trick or treat as she really enjoyed what we were doing. I looked at my friend's two,three, and four year olds and wondered what life would be like if she were like them. I wondered what emotions I would feel if she told me that she loved me, said mommy, or daddy.
I find it strange that I wonder about this imaginary version of my daughter, yet I never wonder about an imaginary version of Elijah. I guess this is just one of those things that we go through with special needs children, and I wonder if it isn't really just a manifestation of the continued cycle of grief we go through for the death of the child we imagined we would have.
Now, I don't want you to think that I'm sad with what I got; because I'm definitely not. I love her more fiercely than I ever thought possible and to me she is perfectly imperfect, like I've said before. She fills my heart with so much love and happiness. She fill my arms and my lap with the best hugs and snuggles I could imagine. Rocking her as her chocolate brown eyes look deeply into mine, is one of my favorite things about my sweet Sue Sue. I guess, there are just moments, and thank God they are fleeting, where I just can't help but wonder who she might be if that little piece of the chromosome appeared in the right spot. As I sat in the dark with her head laid on my shoulder I started to tear up at all of the thoughts flooding my mind when my mom popped up next to me and asked where my dad was. The moment passed, the "ma" ran out, and Tyley Sue was soothed and rejuvenated by the few moments of rocking and drinking she had.
She then sat in my lap laughing at me because I starting coughing after she finished her milk. She thinks it hilarious when anyone coughs or sneezes, which is funny in itself to me that she finds it so funny!! There was a time when we longed to hear Tyley Sue laugh. She didn't really start laughing at things until over the past year, and now she only laughs infrequently and at the most ridiculous and inappropriate things! But, as she laughed last night, my heart was filled, and that little part that comes out every now and again, the fears, doubts, concerns, wishes, sadness, grief; was put away and locked back up. I moved on, letting it all go (I channeled Elsa from Frozen since there were so many there ha ha ha), because that is just what you do to keep it all together for yourself and your family.
I think God knew in that moment I needed to hear her laugh and I needed to see her really enjoy the night, even if her way of enjoying it was different from the ways of other children. Her sense of enjoyment came at that moment from simply being rocked and held and soothed and then being allowed to run, jump, and clap for herself. Her enjoyment didn't come from the candy, the costumes, the decorations, the jumpy houses, or hot air balloon; and that's okay and it's what makes her unique and special to me and to most others who know her. I'm thankful for her and that God allowed me to be her mother because this little girl sure is teaching me a lot!!
 |
| Right after rocking and drinking her "ma" |
 |
| My sweet Elijah as the Cowardly Lion! |
 |
| Dorothy getting her pig tails fixed up |
Sunday, August 24, 2014
Special Needs Dads Rock
After we received Tyley Sue's diagnosis and she was so nicely labeled as "special needs", I have read a lot of other blogs about special needs children and their moms. The mother is really the only person that is referred to when people talk about the braveness, strength, hope, faith, sorrow, stress, and tears that are shown during the diagnosis and day to day life of a special needs child. People refer to the special needs mom as someone who rises above and is extremely selfless. They talk and act as if she's almost super human.
I've been pretty honest about how most days me and God get along really well and I feel Him enabling me to overcome my chatterbox (the enemy's nay-saying in my ear) and hopefully glorify His name with how I handle myself and my family. I've also been pretty honest about the ugly times where I yell at God and tell him how angry I am, and how he's put more on me than I can take, and how it's not fair, and how scared, empty, and stressed beyond belief I am---yes, I have plenty of those days too. Bottom line is this-without God and my husband I couldn't do this life; which brings me to my point today- special needs dads rock!
My husband has went through the same ups and downs that I have. He has went through the stages of grief right along with me. Some we have endured together,at the same time, other times we were at different stages of acceptance. In the beginning, Tyler wasn't really open to hearing about Tyley Sue's "inabilities". He was always coming to her rescue and to her defense about what she could do. He looked at her through rose colored glasses and saw the best without seeing the ways she was falling further and further behind. Slowly but surely he started seeing what I was seeing and he started accepting that something wasn't quite right. Receiving Tyley Sue's diagnosis and getting answers from her doctor was difficult for him. Just like most other fathers, he had dreamed of terrifying her boyfriends in high school and envisioned himself walking her down the aisle and dancing with her on her wedding day. He dreamed of seeing her give her heart to Jesus. He thought about the future and how he would be the first boy she would dance with, how he would teach her how to ride a bike and how to play ball.
Just like me though, when the reality hit, his dreams died and new ones were created. His prayers changed and he now sees her for who she is-not who we want her to be. He sees her beautiful brown curly hair, her dark eyes, her soft skin. He rocks her and sings her favorite songs. He picks her up by her arm and leg and manually "swings" her as she lights up, smiles, and throws her head back. He puts her to bed at night by cuddling her up tight. He brushes her hair and puts it in a pony tail. He feeds her, bathes her, dresses her. He lights up at the sound of her laughter. They play together, he teaches her, he LOVES her for her.
As a woman, I'm emotional and sometimes weaker than I would like to be; and when we received Tyley Sue's diagnosis I was a mess. I remember specifically while in Maryland for all of her initial major testing there was a moment when I realized a test had been added to her already full schedule for the day. It was an EKG. When I saw it, I knew that something had been seen on her echo-cardiogram earlier that morning and that they were concerned. As I asked to speak with the doctor and they confirmed that her echo-cardiogram was concerning and something appeared to be wrong with her heart, I fell apart on the inside. We were in the lobby of the hospital, I felt like a zombie walking back to the room attempting to hold myself together. As I came into the room and started telling my mom about the results, I fell apart. I have never in my life sobbed like I did at that moment. As I cried and rocked back and forth on the couch in Tyley Sue's hospital room, angry with God for putting yet another thing on my plate; my husband, my ROCK, held me tight as my mom looked on crying with me but saying over and over "it's okay, it's going to be okay".
I only tell this story to show how these special needs dads not only carry the weight of their children's disabilities, but at times, they carry their wives too. In that moment my husband kept locked inside his own fears, concerns, doubts, anger, sadness, and tears; and he allowed me to fall apart and fall into his arms-waiting for his moment to come at a later time. These dads- they have the same emotions that we as mothers have- sorrow, anger, sadness, fear- they, however, feel the societal pressure to keep it locked up and be a MAN! I must say, I am thankful for the strong arms of my husband over the past year, especially. He has led our family by putting God first and loving us all through the good and bad times. It's been tough and at times I didn't think I would make it-and I might not have if it weren't for this amazing man and special needs dad that we are so blessed with.
I've been pretty honest about how most days me and God get along really well and I feel Him enabling me to overcome my chatterbox (the enemy's nay-saying in my ear) and hopefully glorify His name with how I handle myself and my family. I've also been pretty honest about the ugly times where I yell at God and tell him how angry I am, and how he's put more on me than I can take, and how it's not fair, and how scared, empty, and stressed beyond belief I am---yes, I have plenty of those days too. Bottom line is this-without God and my husband I couldn't do this life; which brings me to my point today- special needs dads rock!
My husband has went through the same ups and downs that I have. He has went through the stages of grief right along with me. Some we have endured together,at the same time, other times we were at different stages of acceptance. In the beginning, Tyler wasn't really open to hearing about Tyley Sue's "inabilities". He was always coming to her rescue and to her defense about what she could do. He looked at her through rose colored glasses and saw the best without seeing the ways she was falling further and further behind. Slowly but surely he started seeing what I was seeing and he started accepting that something wasn't quite right. Receiving Tyley Sue's diagnosis and getting answers from her doctor was difficult for him. Just like most other fathers, he had dreamed of terrifying her boyfriends in high school and envisioned himself walking her down the aisle and dancing with her on her wedding day. He dreamed of seeing her give her heart to Jesus. He thought about the future and how he would be the first boy she would dance with, how he would teach her how to ride a bike and how to play ball.
Just like me though, when the reality hit, his dreams died and new ones were created. His prayers changed and he now sees her for who she is-not who we want her to be. He sees her beautiful brown curly hair, her dark eyes, her soft skin. He rocks her and sings her favorite songs. He picks her up by her arm and leg and manually "swings" her as she lights up, smiles, and throws her head back. He puts her to bed at night by cuddling her up tight. He brushes her hair and puts it in a pony tail. He feeds her, bathes her, dresses her. He lights up at the sound of her laughter. They play together, he teaches her, he LOVES her for her.
As a woman, I'm emotional and sometimes weaker than I would like to be; and when we received Tyley Sue's diagnosis I was a mess. I remember specifically while in Maryland for all of her initial major testing there was a moment when I realized a test had been added to her already full schedule for the day. It was an EKG. When I saw it, I knew that something had been seen on her echo-cardiogram earlier that morning and that they were concerned. As I asked to speak with the doctor and they confirmed that her echo-cardiogram was concerning and something appeared to be wrong with her heart, I fell apart on the inside. We were in the lobby of the hospital, I felt like a zombie walking back to the room attempting to hold myself together. As I came into the room and started telling my mom about the results, I fell apart. I have never in my life sobbed like I did at that moment. As I cried and rocked back and forth on the couch in Tyley Sue's hospital room, angry with God for putting yet another thing on my plate; my husband, my ROCK, held me tight as my mom looked on crying with me but saying over and over "it's okay, it's going to be okay".
I only tell this story to show how these special needs dads not only carry the weight of their children's disabilities, but at times, they carry their wives too. In that moment my husband kept locked inside his own fears, concerns, doubts, anger, sadness, and tears; and he allowed me to fall apart and fall into his arms-waiting for his moment to come at a later time. These dads- they have the same emotions that we as mothers have- sorrow, anger, sadness, fear- they, however, feel the societal pressure to keep it locked up and be a MAN! I must say, I am thankful for the strong arms of my husband over the past year, especially. He has led our family by putting God first and loving us all through the good and bad times. It's been tough and at times I didn't think I would make it-and I might not have if it weren't for this amazing man and special needs dad that we are so blessed with.
Monday, August 11, 2014
Milestones
This past week I've been reminded of what it's like to see your child reach a major milestone. Our milestones have always been on a super slow track for Tyley Sue, and lately have just kind of been at a stand still it seems like. I have learned to greatly appreciate the milestones-both big and small- that she reaches. I also think I have a deeper appreciation for Elijah reaching his on time and early. As he took his first steps this week, I celebrated! It's so exciting to see him take his steps, use a pincer grasp to pick things up, investigate him toys and play appropriately with them, and to hear him babble and say "mama" and "dada"; these are words we still don't hear Tyley Sue say at 3 years old. I have learned that there is no comparison in my two kiddos. They are each unique and will do things on their own time and I'm so thankful for them both!!
As Tyley Sue starts school this week, she's reaching a new milestone of her own. I would say that my nerves are a little on edge with some fears. Probably not the same fears other mothers have as their kiddos started school this week, but fears nonetheless. I'm super nervous about her putting everything in her mouth and eating non-food items. It would happen on the regular, multiple times a day, if we weren't diligent in watching her every move. I know they will push her, and I pray that they can help her progress. I want her to gain new experiences that will grow her and stretch her; but I want her to be safe too. I'm nervous about her not being able to communicate her needs and wants, and I'm praying that they can be patient as she attempts, in her own way, to tell them what she needs. I'm hoping that the "typical peers" in her class don't hold her teachers back from giving her and others like her the attention and support they need. I know the teachers are nervous about this as well and I pray that they will be able to balance meeting the needs of all the children in her class. As I sit here and type in all my fears and things that I'm nervous about, I'm reminded of how this helps nothing! God has a way of calling me out when I need it, thankfully! Matthew 6:34 says,
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."
And then in John 14 he says:
"Peace I leave with you; my peach I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."
So, I will do my best to quit worrying and just pray a little more about it. I know God's at work in our lives and this is all a part of his plan to reach others using Tyley Sue!
As Tyley Sue starts school this week, she's reaching a new milestone of her own. I would say that my nerves are a little on edge with some fears. Probably not the same fears other mothers have as their kiddos started school this week, but fears nonetheless. I'm super nervous about her putting everything in her mouth and eating non-food items. It would happen on the regular, multiple times a day, if we weren't diligent in watching her every move. I know they will push her, and I pray that they can help her progress. I want her to gain new experiences that will grow her and stretch her; but I want her to be safe too. I'm nervous about her not being able to communicate her needs and wants, and I'm praying that they can be patient as she attempts, in her own way, to tell them what she needs. I'm hoping that the "typical peers" in her class don't hold her teachers back from giving her and others like her the attention and support they need. I know the teachers are nervous about this as well and I pray that they will be able to balance meeting the needs of all the children in her class. As I sit here and type in all my fears and things that I'm nervous about, I'm reminded of how this helps nothing! God has a way of calling me out when I need it, thankfully! Matthew 6:34 says,
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."
And then in John 14 he says:
"Peace I leave with you; my peach I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."
So, I will do my best to quit worrying and just pray a little more about it. I know God's at work in our lives and this is all a part of his plan to reach others using Tyley Sue!
Subscribe to:
Posts (Atom)