"...cast all your care upon Him, for He cares for you." 1 Peter 5:7

This has been a tough week already. Yesterday Madison had an appointment at the Child Development Center at Vanderbilt, and today she had her testing for the developmental Pre-K with the school system.

I've been anxiously looking forward to the appointment at the Child Development Center because with everything that has gone on with Madison, it feels like we have a whole lot of things that are going on, but there isn't really anything cohesive to bundle it all together. (besides her genetic abnormality... but we don't know besides her having one kidney what is attributed to that versus what could have happened regardless). Here's a picture I took when I was filling all the forms out for this appointment that shows everything medically she's been through or been diagnosed with. (Side note:  they gave me 2 lines for all this information, and I had to use a whole sheet of paper).

I've been struggling with wanting to have some kind of diagnosis that can help us get her the services she needs, but on the flip side not wanting there to be anything they can say because I don't want her to have that label.

At her appointment yesterday, after going through Madison's medical history, my concerns, and observing Madison, the doctor we saw diagnosed her with cerebral palsy & ataxia (which is basically uncoordinated fine & gross motor movements). She also thinks she could have apraxia (but wants a speech pathologist to officially diagnose that), and she thinks Madison could have a mild case of Autism. Her speech therapist said that we will keep a watch on the apraxia, but that she wouldn't diagnose a child until they were 3 or 4 at the earliest. Regardless, we do know that she still needs a lot of help with her speech & communication.


When she said autism yesterday, my heart sank & I did get upset. I wouldn't say that I'm a negative person, but I do tend to look at things with the worst-case scenario in mind. I want to be prepared for what could happen & hope for the best so I'm not disappointed or shocked when something bad does happen. I have known that autism was a possibility, but everyone we have talked to doesn't see that with Madison, so I wasn't prepared at all for her to say that & it threw me for a loop. With that being said, she has not been diagnosed with autism. We have an appointment on June 9th with the psychologists at the Child Development Center to do further testing & observation to see what they think.

Last week, we thought that we had a good plan going forward & that Madison would be able to just continue with private speech therapy once she turned 3 and that we could possibly get OT & PT through the school system if she qualified. We had a good plan as far as how we would pay for the private speech therapy because right now our insurance does not cover it. With the appointment yesterday, it looks like Madison will need to continue with speech, OT, and PT. Jake & I will do whatever it takes to get her the help she needs, but the realization of that & the stress of how are we going to pay for this hit me right after I realized what all the doctor said at the appointment. Yesterday afternoon I just had a break down. I think I sat in the recliner & cried, prayed, talked on the phone for about 3 hours.

I was stressed, worried, concerned, scared... how are we going to do this? What are the next steps? Where do we go from here? I had to finally come to terms with the fact that I do have a special needs child & she is likely going to be in special education for the foreseeable future. How do I protect her? I know how mean kids (and even adults) can be. Thoughts are going through my mind & not only was I scared & sad... I was mad. As I was praying all I kept asking God is when is this going to get easier? Why does Madison have to go through these things? Why do we keep getting the floor ripped out from under us when we start to think things are looking up? But you know what, God wants us to come to Him with all our burdens. It's ok to ask "why?" It's ok to feel pain, hurt & not understand what the bigger picture is. Because we can't see the bigger picture - but God does. He has had a plan from the beginning for Madison, before I even knew that she would be my child.


"Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:5


"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope." Jeremiah 29:11


Worry is a sin. It is the result of not trusting that God will do what He says & not having the faith that He will take care of you. This is one of my struggles. It is so hard for me to give up control & to not try to fix everything myself. Does it mean that we can't ask God why things are happening & pour out our hearts to Him? Absolutely not. My relationship with God is just that - a relationship. For any relationship to grow, you have to communicate. Communication & relationships aren't always rainbows & sunshine. There are hard times & struggles, and God wants us to come to Him with all of our cares, hurts, sorrows, struggles as well.


"...cast all your care upon him, for He cares for you." 1 Peter 5:7


"Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." Matthew 11: 28-30


"Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Phillipians 4: 6-7


A dear, sweet friend of mine sent me these words this morning...


"You are grieving loss. It's ok to do that and to allow yourself to grieve. You have this idea of how things will turn out for your kids, and when someone throws you a curve ball with a bunch of diagnoses you feel like that person or results that you dreamed about died. You have to redream the dream. Your baby girl is a delight and she will be forever loved by her peers and their families. Don't stress over the Special Ed stuff. You may choose to homeschool or put her in private school. The possibilities are endless. The beauty is, you don't have to know any of that today. Today you get up and you thank God that she can walk, love, cuddle, and accept your affection. You don't get wrapped up in the labels and you ask God how to use her & your story to bring Him glory. He will make Madison's paths straight & yours too. She will grow into a young lady that loves Him & that is all that matters. If she never plays soccer or volleyball... who cares. If she keeps a sweet innocence about her that shouts I am filled with the Holy Spirit... now that my friend is value. You do not know how God will use this, but with your gifts and obedience to the Lord it will be big. It will be exciting to see it all unfold."


WOW... what an amazing word from my sweet friend. God used her this morning to tell me exactly what I needed to hear.

You know you have a toddler when...

I haven't written an update in a while. Life has been crazy, and I just haven't felt like I had anything that had happened that was worth writing a post about. Right now I'm running in a million different directions all at once, so things have been a little jumbled in my head. Thank goodness for my planner or I would never be able to keep everything straight. Somehow though, I love the craziness. And I must say, life with a toddler is nothing short of craziness... and exhaustion... and frustration... but lots and lots of fun. :)






So on to my next post - you know you have a toddler when...






~You try so hard to get your child to stay in their bed at night & you complain when they crawl in your bed about 3am every morning... however, you secretly love it because it's the only time they will snuggle with you.






Madison has always been a great sleeper & has slept through the night. For the last couple of months though, she's starting getting up about 3 or 4am most mornings and getting in our bed. We still have a baby monitor that we leave on to be able to hear her at night. You can hear her bed creaking as soon as she gets up & it's like she sprints across the hard wood floor and makes a bee-line right for our room. You can hear her coming across the floor (BOOM BOOM BOOM) - then she gets up in our bed and throws her arms around me. That's the only time she wants me over her daddy here lately, so I will take it however I can get it!




~You've contemplated getting one of those kid leashes... yes seriously.


Madison won't be 3 until June, but she looks like she is 4 or even 5 because she's so tall! (and I think her glasses make her look older). So I get these looks from strangers when she's in her stroller. She can still fit in it, but her feet aren't far from dragging the ground. Baseball season is starting up, and I'm trying to figure out what I'm going to do to be able to keep her occupied & be able to watch even a little of my brother's games. Jury is still out on that... but I did think that if I got one of the kid leashes that I could tie it around the bleachers & she could just run around by the bleachers. Horrible, I know! I don't think her Mimi would ever let that happen, and I always said that I would never do that to my child... but the thought has popped in my head. Hopefully between bubbles, sidewalk chalk, books, the Ipad, and portable DVD player we can keep her semi-occupied.




~Your child pees on your shirt & pants in a restaurant but you don't even care because they used the potty! (even if you have to make a Walmart trip right after)


After therapy today, Madison & I went and ate at Longhorns. I had to go to Walmart right after we left there, so I was getting her out of her chair to go change her diaper. She was pulling at her diaper, so I asked her if she needed to use the potty & she said yes. She does that a lot though just to get our of her chair, but I took her to the bathroom & wanted to see if she would go anyway. I didn't want her touching the toilet seat, so I was holding her over the toilet & squatting in front of her... probably not the best idea. She started using the potty & I was so excited I didn't realize my shirt was hanging in the line of fire & it was getting on my pants too. As I was putting a pullup on her, I realized my shirt was wet.. yep definitely pee. Good thing it was a printed shirt so you couldn't tell! :) But who cares - she used the potty!! Yay!




On another note, after she uses the bathroom we do the potty dance (which just consists of me clapping & singing "I pee peed in the potty" over & over while she dances around in a circle). Sooo... we did the potty dance after she used the bathroom today in Longhorns! I didn't realize there was someone in the other stall until I heard them quietly laughing. HA oh well!




~You go to drop your child off somewhere & actually have on something other than yoga pants (like jeans) and people wonder where you are going and asked why you are so dressed up.


~You can translate for your child. No one else can understand what they are saying, but you know. (most of the time... well, some of the time)...


I'm convinced that Madison actually just is speaking a foreign language... or she may just be speaking the language of the minions... that may be a better bet.




~You have learned to tune things out... really well... especially in the car.


~It's acceptable to eat your meal plus whatever your child doesn't eat, especially at restaurants. You can't let good food you paid for go to waste!


~Hot dogs and macaroni & cheese are acceptable food groups.


~You get to experience the world again through their eyes.


I love seeing how Madison reacts to the most ordinary things. I love how excited she gets when she learns something new or sees something for the first time that she is amazed by. I love celebrating the little things with her & seeing the progress she makes (even if it takes me a while to see that she's made progress since I'm with her all the time). She gets so excited about bubbles & balloons... things I wouldn't look twice at. But seeing her little eyes light up & get so excited about those things is so cool to watch.


What would you add to this list?? :)

Struggles

I haven't written an update in a while. Not a lot has been going on. I feel like we are in a little bit of a rut. Therapy, MDO, therapy, MDO, therapy... Same thing each week. I think a lot of it has to do with the weather, the cold, just how gloomy & miserable it's been for the most part (we did have a few nice days this week though thank goodness)! I think about Madison's delays/struggles a lot, and here lately I feel like its what I'm thinking about 75 percent of the time. I'm thinking about what she's done in therapy, how I can implement that at home, how much time have we spent doing things to help with her speech/OT/PT issues that day vs just playing or watching a movie, how can I get her to make the sounds she's been struggling with (like her E sounds), and the list goes on and on. More often than not, at the end of the day I'm beating myself up. I should have done this with her today, we should have tried this, am I doing enough to help her, would she be better off in a specialized preschool... It is exhausting. There are a lot of days I feel like I'm on the verge of tears throughout the day. 

I also feel like I put so much pressure on myself to diagnose Madison. Maybe she does just have a communication delay, balance issues & sensory issues and there is no syndrome or underlying factor causing all of it. In my gut though I feel like there is something else going on, that there has got to be a reason she's having all these issues (and I know it could just be that she has this unique genetic abnormality, but that gives us nothing to go on). I feel like a horrible parent because there is a part of me that wants her to have a diagnosis, a label, something that can give us more direction in the best therapies & things to do to help her. Right now I almost feel helpless - we are doing what we can, but is it enough? Are we doing the right things? Are we asking the right questions? Are the doctors running the right tests? 

I think the biggest issue I see right now is Madison's speech / communication. We are in speech therapy twice a week now. We are also probably going to do another evaluation with a different therapist for a second opinion / different perspective. Madi also had an appointment with the Child Development Center at Vandy in April to do some testing. I know you aren't supposed to compare your child to others, but as a mom with a delayed child how can you not? Most kids her age that we are around are talking in sentences & a lot are even having real conversations with you. We are still not getting a lot of 2 words together (except for I want), and definitely no 3+ words together. She hadn't been able to say I love you, thank you, simple words like that & she's not saying a lot of things spontaneously - she still has to imitate a lot (even though she had improved in this). I know how frustrated it makes me, especially when she gets frustrated & lashes out because she can't get out what she wants to. I can't imagine how frustrating it is for her. I just wish so badly I knew what to do to help her. 

Maybe we will get some answers in some of these upcoming appointments. I just want the absolute best for my child, and I'm hopeful that she will catch up & be right up there with the kids her age. There is the possibility though that she will always be behind, and if that's the case we are still going to do what we can to help her. I know she is so smart (she can point to all the letters of the alphabet, she just can't say most of them), I just hate to see her frustrated & unable to tell us what she wants/needs.

Psalm 23

The Lord is my Shepherd; I shall not want.
He makes me to lie down in green pastures; He leads me beside the still waters.
He restores my soul; He leads me in the paths of righteousness for His name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me;  Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies; You annoint my head with oil; my cup runs over.
Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the Lord forever.
Psalm 23

How amazing is it to read God's Word & to know you completely understand those aspects of God described in it? Not because you have heard it or read it, but because you have lived it.

Psalm 23 was the scripture we studied in Sunday School today. It is such an amazing, powerful Psalm. We read it several times in class this morning, and the whole class I was on the verge of tears. Finally, with my heart beating in my chest so hard I thought Jake could feel it with his arm around me, I spoke up. Of course I was about to speak about our situation with Madison & what we have gone through. I immediately start to tear up as I'm talking & get so overwhelmed with emotion I can't talk. It's one of those ugly face cries too... You know what I'm talking about. You want to speak, but when you try you can't get the words out. Full on ugly cry. Not a cry because I'm upset, angry, or sad. A cry because I was so overwhelmed by how awesome God - my Comforter, my Strength, the Ultimate Healer, Provider, Savior - is, and how He has total control.

This morning I woke up earlier then usual. I laid in the dark & just listened to the sweet sound of Madison breathing over the baby monitor. I laid there and just thanked God for the peace He has given me, and that I don't have to go in her room several times a night to watch her breathe. He is in control. What a burden has been lifted off my shoulders. It's amazing how when you let go & trust Him what can happen. Are things perfect? No. Do we still have struggles? All the time. However, the valleys and the dark times are so much more bearable when you have someone bearing the burden not only for you, but with you.

I have learned so much about myself in the 2 and a half years Madison has been on this earth. More importantly, I have learned so much about God. Living through these valleys & watching my daughter face the shadow of death had brought me so much closer to Him.

Thank you God for being with me through the dark times & the happy times. My circumstances change, and my emotions change during those circumstances, but You remain constant, steadfast, and ever-present. You are good all the time, and I thank you for lessons learned & the growth in my relationship with you. Amen.

Christmas Traditions

I will be the first to admit it... I'm feeling a little more like the Grinch right now concerning Christmas. Im not really sure why either. Maybe it's seeing Christmas & shopping commercials since early November... Maybe it's seeing how greedy & materialistic Christmas has gotten... We haven't even gotten our Christmas decorations up. The task of putting up a tree & decorations seems nearly impossible with a two-year old who is into everything & climbing on everything she can. I'm even debating whether to decorate our tree, and wondering how I can keep Madison from pulling it over on her.

With that being said, I really do love Christmas. I have great memories of Christmas & love that it's a day to celebrate the birth of Jesus. One of the things I remember about Christmas growing up were the plays we did at church. They were awesome (from what I renember 😃), and there were always some comical mishaps (like my brother riding on a plastic camel when he was a toddler). I also remember getting to open one present on Christmas Eve (pajamas) & reading the Christmas story out of the Bible (both which Jake & I have continued with Madison). My brothers & I would get up super early to take a sneak peek at what "Santa" brought us, trying to sneak across the squeaky spot in the wood floor so mom & dad wouldn't hear us. We would open presents Christmas morning, then go to Gigi's for breakfast. (Which we still do... Adult cousins, I think we should wear our PJs this year like we used to 😳)! That afternoon we would go to my Granny's for lunch.

I know Madison is still too little to remember Christmas, but I want it to be a magical time of year for her like it was for me. As she grows up I want her to look back on Christmas with fond memories. I want her to know the real reason for the season, and the joy that comes from giving to others. (Not just presents, but helping those in need, etc.) I can give my family the gift of joy & peace at Christmas, or I can ruin what should be one of the happiest times of the year. I resolve this year to have a fun, peaceful, joyful, Christ-filled season.

The Christnas traditions we do right now are to read the Christmas story from the Bible (Luke), and Madison opens one gift Christmas Eve (new Christmas PJs & a Christmas book). Some of the traditions I want to start this year are having a birthday cake for Jesus, going to a Christmas parade, going to Christmas plays, baking treats for those we want to show how much we appreciate & love them, watch a Christmas movie (or several), go to dinner & look at lights. Next year I would like to do an Advent calendar with Madison as well.

What are your Christmas traditions?

Goodbye Oxygen!

This past Friday was a bittersweet day for me. The supply company came & picked up Madison's oxygen & supplies! We have been waiting for them to come get everything for a couple of months now, but it wasn't actually real until the guy who came to pick everything up loaded it into his truck.

I am so happy that she doesn't need it anymore & that it's out of her room... But as much as I was ready to get it out of the house, just having it there made me feel better if something happened where she needed it.

I finally have gotten to the point where I don't have to get up and check on her & physically watch her to make sure she's breathing. However, I do still wake up several times a night & listen to the baby monitor beside me to make sure I can hear her and she's ok. I know that everyone worries about their children, but until you have gone through a traumatic experience with your child, I don't know how much you can relate to what I'm about to say. (Without thinking I sound a little crazy). She has come so incredibly far, but I still have dreams that I go in to find her blue & not breathing. And sometimes I can't get her to wake up or start breathing. When those dreams do happen (and it's less frequently now), I do have to get up & give her a kiss. Going in to find your child not breathing, blue & unresponsive not just once, not twice, but 5 times is something I never want to go through again. Only through the grace of God & trusting in Him was I able to go through it before.

Madison (and all children) are a gift from God. They belong to Him, and He has entrusted Madison to Jake & I. We have endured several hard seasons with her, but we are in a good season right now. I'm so thankful & so glad to say goodbye to the oxygen. God is good all the time!

Halloween

I can't believe it has been almost a month and a half since my last update! My world has been a little (ok, a lot) hectic since the beginning of October. Things are starting to calm down a little bit, but with the Holidays quickly approaching that won't last long!

First, it's been over a year since Madison's last seizure. Her medicine she's on is working right now & that is such a praise. I pray it continues to work, because we know from her last EEG she would likely be having seizures if not on her medicine... And that is not something I ever want to have to see again. Last Halloween was actually the date of her last seizure(s), and we were in the hospital with her during that time. This Halloween was special to us because it was actually her first official Halloween she got to get out & actually go trick-or-treating (even though we just went to families' houses). What would have been her first Halloween she was sick & running fever so we weren't able to get her out, and then last Halloween, as I said, we were in the hospital with her. 

She had a great time. She liked seeing everyone & she loves being scared! I would hide, jump out & scare her, and she would just laugh & laugh! I love hearing that laugh she does when she thinks something is hilarious & it's a deep belly laugh. We call it her "evil laugh." Jake said she had a "Halloween Christmas" from all the goody bags & treats she got. She is so loved & I'm so thankful for how close our families are. She was supposed to be Minnie Mouse. She wouldn't wear her ears, but she was still pretty cute! 😊🎃