Speech-less

Well, we are a speech-less family! I should explain. The Developmental Specialists are supposed to take a couple of months to have an opening for Jule, so I emailed his previous Speech Therapist to see if she could at least evaluate the speech portion of his "problems." Her name is Sarah. She got us right in, and we went bright and early Monday morning to see her. I really didn't know what she would say, and I dreaded the thought of getting up really early on Monday mornings again to take him to speech, but I was more than willing to do what Jule needed. He walked into the waiting room and played with the toys, and he didn't seem to remember where he was. He had not been there since the end of January or something like that. The minute he saw Sarah, he got all excited and took off for her office...without her! I loved how much he loved her and how excited he always was to see her. Several months made no exception! To our delight, Jule passed with flying colors. She said she is very comfortable with where he is at with his speech, and he has no need to go back! We celebrated the fact that he does not need help with his speech!

He has been changing so much in the past couple of months. With all of his breathing and croup issues, he has ALWAYS completely freaked out when they put the oxygen sensor on his finger. He also hated band aids with a passion. A few days ago, Noly needed a band aid, and Jule asked for one. I put it on his finger, and he did not mind one bit. It was so wonderful to see him take a step in the less-tactile-sensitive direction! He has been wheezing really bad for a few days, and he has been on a steroid inhaler once daily for over a month now. It has been helping, but I was not comfortable with the way his breathing sounded this morning. I took him to the doctor, and he was FINE when they tested his oxygen level. I told him it was a band aid, and he accepted it and was totally calm. Yay, Jule! And Yay, God, for doing such amazing things in this little boy. He is still very wheezy, which the doctor thinks is due to the high heat index, but he does not have croup and is happy.

I'm feeling better about his eventual Developmental appointment, though I'm not convinced that he will not need some Occupational Therapy. I have no idea. But it does my heart so much good to see him make strides verbally, emotionally and physically. He is still my wild at heart, strong-willed child, which I am so grateful for. I want him to have the character qualities he needs to become what God wants him to be. He may or may not have inherited his strong will from his Mommy ;)

At our church, we have crosses on the front walls. During an invitation time, anyone can go forward to write on a piece of paper and tack it to the cross. A few weeks ago, I felt like I was supposed to go and write a simple word on the paper...JULE...and place it on the cross. I had been living with such fear of what may be wrong with him, and I have to (sometimes daily) remember that he is God's and give him back to God. It was at the cross of Christ that a mother's heart broke as she watched "her" Son's torture, and it was at that VERY same cross that He won the victory for all of us. Truly, He is capable of handling my fears, my fragile mommy's heart, and each difficulty that we will encounter in this life.

Through Fire & Water to Abundance

I was reading Psalm 66 today and ran across a verse that stood out to me...verse 12b says, "...we went through fire and water, but You brought us to a place of abundance." I feel very much like there has been a lot of fire and water for awhile now, but I also have hope that God will bring us to a place of abundance. I feel like I am constantly watching Jule for signs that something is wrong or for signs that he is fine. I am testing what the teacher said about him when I see the opportunity arise.



Last week, he walked up to me in socks and sandals. This was completely abnormal for him because he always insists on wearing shoes and socks. I hate it for him because it is so hot here. Apparently, Kevin put his socks on and Jule asked for sandals over the socks. So, after a few days, I decided to take it a step further. Just before we walked out the door, I put his sandals on really quick without putting socks on. He got a little upset, but I distracted him with a toy and rushed out of the house. I'm happy to say that he has been wearing, and even asking for, sandals ever since! What a victory over shoes :)


The school seems to be having a huge problem with him with tactile sensitivity. They said he screams when he touches fingerpaint or glue until they remove it from his presence. I found a Father's Day shirt at Walmart that allows you to put your child's handprints on it, so I bought it for my dad knowing that it would be an opportunity for me to see his reaction to the paints. Not only did Jule put his handprints on the shirt, he came back to me over and over to put more paint on his hands. As you can see, the shirt is VERY decorated, and there wasn't even an ounce of screaming coming from Jule!

Right now, we are discussing where to send both kids to school. Noly can go to public school, and Jule can continue where he is or at another church daycare/preschool nearby. Another option is to send them both to a private school that is just opening up this year. It really makes me nervous because I do not know if Jule would be kicked out of the private school. They clearly state on their website that they do not offer services for children with special needs, and I do not know what the developmental specialists will say at this point. So, we are praying for direction on where to send each child. One thing that God spoke to me as I was driving this weekend is that, even if Jule is rejected (somewhere), God ALWAYS has a place for him. So true.

You Reign

Yet again, I am mentioning a 4 Him song :) We stopped in at Chick-Fil-A tonight to let the kids run off some energy; and as we walked back to our table, I heard 4 Him on the radio singing, "You Reign." Andy could really knock that one out of the park! I think I'm consistently brought back to that truth...He really does reign.

Earlier today, Noly and I were running some quick errands and "God, You Reign" by Lincoln Brewster came on. At the end, there are children saying, "God, You reign." Noly looked at me and said, "What does that mean?" I knew her mind was thinking of rain. I was explaining to her what that meant, and she seemed to at least grasp it partially. I explain it to her and I believe it, but there are so many times I don't live like I believe He reigns. I think that is one of the things He is trying to teach me in this season of life because that word keeps popping up all over. In truth, He is on the throne, but I don't often enough let Him sit on the throne and rule over my mind. This dizzy mind of mine is the domain of spiritual warfare...often!

I really, really worry too much and don't just trust often enough. I really, really try to control too much when I really just need to slide over and let God have the control. He made these two kids so completely and wonderfully how He wanted them to be made, and He gave them to me with the knowledge that I could raise them the way He wanted them to be raised if I would just partner with Him and learn from Him. Anything that I'm viewing as an imperfection is really still His perfect creation. If Jule is behind in his speech again, I need to remember that Moses stuttered. God had no problems using Moses when Moses chose to follow and obey. I will get all the help that Jule needs; and in the midst of it, I need to remember that God created him exactly the way he is for a reason. Yes, he is different by the world's standards, and it is a ton of work for Kevin and I; but God has a plan for him that may even spring forth through what seems less than perfect to us. Even if he has Autism, that does not negate the plan that God already has for Jule's life.

The end of "You Reign" goes...

"Everything You do always is perfect. There is none like You. Lord, You are worthy!"

AMEN!

I Cried Today

I don't have a lot of time or brainpower because of a double ear and sinus infection, but I don't want to forget what I felt today and why I had the feelings I did. Since Noly and I were both home sick, I decided to run to her school for K5 next year to get the packet to fill out. It's only about a mile away, so it was no big deal. She liked seeing her school (from the view of the front office) and is excited about K-5.

While she was napping, I started to fill out a ton of paperwork, and I came across a question that almost sent me into hysterics. I'm not upset because my baby is going to "real school" next year, but I was terribly upset when I read something that I may have to answer differently in the future..."has your child ever received speech or another type of early intervention therapy?" The answer to that one for Jule will already have to be yes because he has had speech therapy. It then went on to ask what kind of disability or special needs your child has and if they have an EIP, etc. I do know what EI means and EIP, not in depth, but I have a broad idea. It just breaks my heart and sickens me that I don't know what is going to happen with Jule. I don't know how I will be answering those questions in regard to them. There are easy answers with Noly, thankfully! And it's not that I look down on those with disabilities. I think it's all of the questions that are not answered at this point.

I sent in the enormous amount of paperwork Thursday, so I hope to have an appointment with the Development Specialists soon for an evaluation for Jule. I think it may be more about grieving the loss of a dream...kind of like every miscarriage was. But I don't even know what to grieve at this point because I don't know what the specialists are going to say. I don't want my little guy to be an outcast in school like they say he is because he screams when his personal space is invaded. He is surely a delight to us, and I so want other people to be able to delight in him too, not just be irritated.

I'm losing my thoughts quickly here. I hope some of this makes sense.

The Unsung Hero

This post is dedicated to the Unsung Hero...to Noly. God made her in such a way that she would provide much laughter and comic relief to our household. He made her laid-back and sensitive. He made her with captivating blue eyes that tell you of guilt before any physical evidence is discovered!

Though once a hater of dressing up in anything scratchy and Princess-like, she would one day become the Dress-Up Queen who surrounded herself with everything Princess. She would wear the most uncomfortable dress all day because it looked beautiful even if it made her skin crawl, though you never would have thought so based on the photo below!

When taken to Build-A-Bear, this little Hero would come up with a concoction that even made the girl behind the counter burst out in laughter. She would then "skate" her little creation named Princess all through the mall, pulling the attention of almost everyone walking by!

She would discover that tu-tu's are made for more than just beautiful skirts; they can also double as hair if you feel that your hair is not pink or fluffy enough! I guess if you had a brown tu-tu, you could dress up as a lion with only a moment's notice?

And if you were this little Unsung Hero named Noly, you would have the biggest heart to deal with a little brother who was difficult to get along with. Even though he screamed until you often ran away covering your ears, you would be back quickly to put your arm around him and offer him your protection and comfort.

I'm so thankful for this little girl!

My Son

20 minutes after birth, I still had not held my son. I watched as they did all of the weighing, the wiping off, etc. Then, they did something strange...they called someone on the phone. I knew it wasn't normal because they did not do that with Noly. I asked what was wrong and told them I wanted to hold my son. They told me I could only look at him and said he was "grunting" and may need a little help breathing. So, a week later, I got to take my baby home from the NICU with paperwork that documented Jule's medical problems...20 minutes after birth.

When Jule reached 4 weeks old, he began to scream for hours on end. I would feed him for an hour, burp him and change him for an hour, lay him down so we could sleep for an hour, and then start all over again. If I didn't burp him for an hour, he would spit up everywhere the minute I put him down. I soon learned something else was wrong with my son...reflux. We often went through 50 burpcloths a day, and he spent most of his time screaming. He was a beautiful baby, and I loved watching as his curly hair appeared; but my heart broke that something was wrong with him.

When he was 5 months old, he woke up with his first case of croup. He was retracting horribly & drooling, and I was so glad when the ambulance arrived. He was admitted to the hospital with a case of complicated croup. Once again, something was wrong with my child. Good thing I didn't know that this would happen over and over again!

Periodically, we would go through normal illnesses like any family does. Jule had 2 sets of tubes, his adenoids removed and continued to have reflux past the age that most babies stop having it. I took great delight in his beautiful ringlets and resisted cutting his hair even though many people thought he was a girl! Isn't that head of hair gorgeous!

Through all of the croup, the ear infections and resulting tubes, the frequent screaming, the speech therapy, I became a Mommy who would have to stand up and fight for the rights of my baby. So, when I went to the p/t conference, I really didn't expect to hear a NEW addition to something is wrong with my child. It has been so overwhelming, and it continues to be overwhelming...though I do have moments where God really ministers peace and strength to me. I know that I will continue to stand up for my child, to fight for his best interests...but I do not really know what that entails right now. I just pray that God gives me the strength I need to do what needs to be done when it needs to be done. Through it all, God still reigns and is still sovereign.

I know that he is a little sweetheart and I love watching him develop into the person that God has called him to be. I believe the strong-willed part of him will turn out to be one of his greatest strengths as he gets older. I'm praying for peace as we wait for possibly a couple of months to get his developmental assessment. Until then, I want to enjoy him and help him in any way I possibly can. With God's help...

When I Find Him

So much has been going on lately. Each of the kids had a tummy bug, then we went to Disney, then I had a meeting with Jule's teacher, then Jule had croup yet again, then Noly graduated from Preschool. I will get to most of these a little more in depth but will happily leave out details from the tummy bugs ;)

Jule got his tummy bug about 10 days after Noly, and it was the weekend before we were supposed to leave for Disney. Now, in the past, it usually takes about 4-5 days, then Kevin and I are sick. We were worried about getting to Disney and getting sick and not being able to care for the kids in a hotel room. BUT we decided not to live in fear, and off we went! We had a wonderful time and actually stayed out until 1 am one night! I was so glad we chose to go, and it was a happy time out of the house for both of the kids.

We got back on a Tuesday night, and I had a meeting with Jule's teacher and the Preschool's Director on Friday. I was nervous because I figured he would be one of the kids that was put in timeout a lot. Unfortunately, that was not the case. They told me how sweet he was and how beautiful his smile is, and I knew it was not going to be good. They listed off many things about him that they are concerned about. They did not know he could talk and were shocked to learn that he rattles off sentences non-stop at home. He also screams when touching fingerpaints or glue and screams when classmates get into his personal space. I knew by the words they were saying that they think he has some form of autism. This has been such a blow to my heart on many different levels that I cannot even get into on a blog. Our Pediatrician is setting up an appointment with the Developmental Specialists at the Hospital I work with. He does not think Jule has autism but may have some developmental delays from all of the sickness...just like he had some speech delays and needed speech therapy.

Kevin had been out of town and came in Friday night. I was so upset that I was barely able to tell him all that had been said. I told him the basics and went up to bed...exhausted. I was overloaded. I laid down, got comfortable, and then I heard IT....yes, IT...again. Jule woke up crying with croup. I picked him up and got him into the steamy bathroom. It helped the coughing, but the stridor was still pretty bad, so Kevin held him in front of the freezer. That helped enough that we felt his breathing was fine. He had some pretty noticeable stridor all night that night. We were so busy with his health that the weekend came and went, and I was a mess...chest pain, crying, so devastated.

Enter Noly's graduation today. She walked in with her class and stood in front of the auditorium. They sang several songs, and I saw her looking for us but could not catch her attention. There were just too many people. She looked sad but continued to sing. Then, the moment came that she saw us! Her whole face lit up, and she sang the rest of the songs all smiles and kept looking over at us. And it hit me...that is what happened to me Tuesday night. I was so overwhelmed. I put Jule to bed just after 7 because he was still sick. Kevin took Noly to Walmart so I could finally be alone, and I sat down with my Bible and began to read. The reading turned to weeping because God began speaking to me. I cried for awhile, read more, prayed, and I found a peace to walk through what lies ahead. And it's because I found Him. I looked through all of the "mess" around me, and I found the One Who can bring light to my eyes. Psalm 34:5 says, "They looked unto him, and were lightened: and their faces were not ashamed." Finding where my Father is in the crowd makes all the difference in the world. And while what lies ahead with this new hurdle is a very emotional roller coaster; if I have Him, I have everything I need.