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! 😊🎃

Good Reports

Madi had pulmonology & ENT appointments today. We had great reports from both doctors! Pulmonology said she looked great & her lungs sounded good. The medical company should be calling us to pick up her oxygen machine & monitor any day now. We don't have to do a repeat sleep study unless we think she is having issues, and we don't have to go back to the pulmonologist unless an issue comes up or she has breathing issues. Definitely great to mark one doctor off the list (even though we really liked her doctor!)

We saw her ENT next, and her ears & throat both looked good. He doesn't forsee anything needing to be done surgically, we just have to watch the dimple she has on her nose for drainage/infection. On a sad note though, her ENT is leaving to go to Atlanta in February. He has been amazing with Madi & has been with us since she was in the NICU. He has also been in all her surgeries. We are sad to see him go!

I have said this before, but it is so heartbreaking sometimes when you go to the Vandy Children's a Hospital. Madison has come a long way & we have definitely had some scares... But nothing like some of these parents & children have to go through. There was a little boy today who came in with a GI tube & he had a trachea tube/oxygen, and it looked like he was missing a leg. Who am I to feel sorry at times for Madison & what she's dealing with (and what we as parents deal with)? She is growing & learning & improving every day. I worry about kids making fun of her for her glasses & not talking/walking well - she is a blessing & is made just the way God wants her. What we have had to deal with could be so much worse. Sometimes it is really good to get perspective & a reality check.

Gigi's 75th Birthday

At the beginning of September, we had a surprise 75th birthday lunch for my Gigi. We ate at Chocolate Covered Strawberry with almost 20 women total who were there to celebrate her. I don't know the last time (if ever) that Gigi had a birthday party just about her - let alone a surprise party! She was so surprised & so appreciative... and if anyone deserves a special day it is most certainly her!

My cousin came up with the idea to do a timeline of Gigi's life with pictures below it (picture below). It was so awesome to see my Gigi's life laid out that way. I always think of her as my grandmother... But she was so much more before that part of her life happened. Each person also had a "Gigi-ism" that we went around and read. Gigi's favorite book of the Bible is Proverbs, so they were taken from Proverbs verses that reminded us of things Gigi says or that reminded us of her.

My Gigi, Delores Williams, is my only grandparent still living. I want to cherish my time with her & learn from her because she is one amazing woman. My family is very tight-knit & close... I have never seen another family that has a bond like ours, and that is because of her. She is the most selfless & giving person I know. She puts her family above herself and loves unconditionally. She is the best cook I know & she loves to cook for her family and have us all over to eat. She has been one of my biggest cheerleaders & advocates. She has been at every ballgame, piano recital, school event, church event, and family event possible. I love her so very much & am so blessed to have her as my grandmother.