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!!

Right after rocking and drinking her "ma"

My sweet Elijah as the Cowardly Lion! 

Dorothy getting her pig tails fixed up

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.

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!

Pure Joy

As I listened last week to a sermon before work from Steven Furtick, I  thought about his words "faith is strengthened by trials". This is so true and especially resonates with me during this time in our lives. He talked about how things don't get strong on their own. Think about it. A muscle doesn't get stronger unless you challenge it. A marriage is stronger when a trial or hard time is overcome. Relationships thrive and grow over time and through experiencing the ups and downs of life together.

The trials we have been enduring haven't been walked through by Tyler and I without questions, doubts, fears, anger, and just downright ugly times. But, that's okay....our faith won't waiver, it's just getting stronger. One of the things Furtick spoke about was the "heros" from the bible. Abraham endured some pretty low times-yet he was the father of many nations. I mean, think about it, he slept with his wife's servant in order to father the child that God had promised him. Because it hadn't happened in the time frame Abraham thought it should have, he grew impatient, and went on with his life how he wanted to, instead of waiting on God's timing. Were there consequences? Yes. Did it ultimately grow him, and strengthen his faith? Yes. Did God turn his back on him? No. It was a faith builder. A relationship strengthener. And ultimately, despite his mistakes, he went on to give his best effort and follow what the Lord asked of him. If you only looked later in Abraham's life and the legacy he left behind as the father of many nations, you might think it was easy, that he just had it all together and never had hard times or times that really tested his faith. But that's not the case for him, and it's not the case for most of us today.

I guess this message he spoke on really made me think about where we are today and where we've been over the past years. Tonight, we looked at a video of our engagement-we were young, skinny (I just had to throw that in there!) and life was easy. We had not faced any really hard times in life and we only had high hopes and dreams for our future. At 19 and 21 we had no idea what was ahead for us. My dreams were typical of a 19 year old newly engaged girl-we would get married, have children (without any difficulty conceiving), have good paying jobs, and live in a pretty house with a big wrap around porch and white picket fence.

 Is that how my life looks today? Some of it, yes. But the details, namely the not so good times, that have been woven in over the last 10 years are the things that have strengthened our faith and grown us closer together and in our relationship with the Lord. Someone told me the other day "You are so strong, and you make this look so easy". It was a compliment, but it was almost hard to hear.

It's not easy, and some days I'm anything but strong. Some days I panic to the point of going numb with fear of our future and have to call my husband on my way home from work to cry. Some days I just feel done with it all and want to throw in the towel and run away. Some days I pick fights with my husband about how dirty the house it just because I'm angry and need someone to take it out on. Some days I feel completely overwhelmed with the amount of time it takes to stay on top of the medical bills, the doctor's office phone calls, the insurance company appeals, the therapy appointments, and then just life in general as a working mom of two and wife. Then, there are days where I'm stronger and Tyler has the same bad days I had. We always laugh at the end of a bad day about how thankful we are that at least one of us stays sane and can talk the other one off of a ledge if we needed to!

During the hard days and times I turn to my husband and God in prayer and usually within a short time, I've been lifted up and reminded of the good in my life and the fact that this journey isn't without a purpose. I usually remind myself of Romans 8:28:

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 

I know that God is working things for our good. His good probably doesn't look like my version of good, but His way is always better and come eternity, I will look back and see how it all fits together. In James we are also told to, Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.


It's so hard to "consider it joy" at times. I think we equate joy with happiness and that's why it seems so hard. But we have to remember that happiness is directly related to our circumstances whereas joy occurs regardless of our circumstances. 

I'm so thankful for God's word to renew and lift me when times are tough because this life as a special needs mom, wife, and nurse isn't always easy nor does pure joy come without work.