Funny faces

This little dude makes us laugh...a lot!

Determination

I am pretty sure this is what determination looks like.

Rainbows and Unicorns

This post is picture overload. We celebrated Ellery's 5th birthday with a rainbows and unicorns party. I seriously did not plan in advance for this and basically put it together the night before with some help from my mom. It was so very simple but E loved every minute of it!I set up two little tables with white butcher paper and crayons. I also had princess necessities scattered on the table. Tiaras, rings, wands, and rainbow ribbon.

Street loved all the action.

Ellery picked out all the utensils and paperware.

Candy overload!

The girls loved the pinata! Oh, and Lulu made the paper pom poms!

Ellery requested the games...pin the horn on the unicorn and hot potato.

The birthday cake was made by friend Shanna.

Surprise!

Madi Kate and Ellery

Lulu also made the wreath! She is getting craftier by the minute. And the sign is by the talented Casey Wiegand.

The girls took home unicorn lollipops and the goodie bags below, full of all things rainbow. Rainbow mirrors, hair rubberbands, lip gloss, fingernail polish, and stickers! The plate was made by me.

5 year old letter

Miss Ellery Paige,

You are 5 years old, a whole hand now. It just can't be. It seems like yesterday it was just the 3 of us, and now you are the big sister to two brothers. I love you so very much.

You finished preschool and are heading to Bridge next year. You love school and are excited about a new school and new friends. You have always been up for trying new things and meeting new people. You just jump right in most of the time, something I love about you. You have started reading a little. In fact, you read the words "Six Flags" off my coke can the other day in the car. You also read a couple of street signs. I know you are going to love being able to read because you adore books. Your world is going to open up, my dear!

You have been quite a big sister to Pricey. You know that Price is unlike most 2 1/2 year olds, but you rarely bring it up. You know he is special and you pray for him with a boldness and faith that mommy admires. You also love on his friends at school. You don't see the disabilities, only the child. This makes mama so very proud. I wish everyone could see others through your lens. You asked to sleep with him on your birthday. You told me he woke up the next morning, stood up in his crib, looked you in the eye, and said, "Hey."

You told me that if you could give one brother away it would be "Rager" because, well, he rages too much. I have a feeling that you two are going to be best of buds and you will be such a good teacher and leader. He may not have been the sister you prayed for, but the Lord has given us just what we need and you haven't skipped a beat. You are such a helper to mama. I really don't know what I would do without you. I often have to remind myself that you are only 5 and still such a baby yourself.

You love art and making crafts and you have become quite a good little drawer. You still like Star Wars and watch it with your dad every once in awhile before bed. Your dad has also taught you recently about Michael Jackson and you are loving jamming out to "Beat it" and "Man in the Mirror." You love your dad and declared yourself a daddy's girl tonight at bedtime.

You have such a sense of justice and fairness that it gets the best of you sometimes. I must say that is a trait you have inherited from your mother. You also have a tendency to like things "just so", and once you get your mind set on something, it's hard to talk you out of it. Again, this is from your mother. Life is going to be a little harder because of these traits, but the Lord will use them for something great.

You have started really understanding about heaven and sin and the reason that Jesus had to die on the cross. You amaze me with your ability to grasp these truths. You love Jesus and I am praying that this love only grows as you get older. I tell you often that the most important thing in life is that you love Jesus and follow Him.

If I had to describe you in one word, it would be "life". You have so much life in you. You love learning and exploring and are full of questions and thoughts. You love your friends and your family with all your heart.

I love you so very much and look forward to your year as a big 5 year old. I always tell you that if I had to go around the world and pick one girl to be my daughter, I would choose you. Every single time, I would choose Ellery!

Love,

mama

Warriors

A couple days ago I ran into a mom at therapy whose daughter has some similar delays as P. She stopped me in the parking lot and we talked a little about schools and therapy and then she told me her daughter had another MRI. There were new findings and the doctors were more perplexed now about a possible diagnosis than before (if that is even possible). She told me she hadn't told anyone because it was just so awful and hard and no one would really understand. But that she knew I did.

Someone pinch me. When did I start understanding this hard stuff? This world of unknowns involving our most precious, treasured children. When did I start grasping the grief process that occurs when you realize your son or daughter is not developing like a typical child? Or the mourning that comes when hopes and dreams for your child start looking a little (or a lot) different.

Then today I saw another sweet friend also walking this road of special needs. She was down about something a therapist had said. As she talked, the tears starting filling her eyes. My own eyes watered as I listened and sympathized.

These moms are heroes. The lengths they go to advocate for their children, the paperwork and processes that have so many loopholes and are terribly time consuming, the therapies, the doctor's appointments, the research, the never ending list of to-do's and feelings of they could be doing more. I could go on forever. I have come to love not only these special kids but the moms that are their warriors. It's like an instant connection and understanding - a club we all belong to but wish so badly we didn't.

Oh Lord, help us. Pray for us. Being a mom is hard enough when you have typical children but then throwing in all these "extras" is crazy hard. I don't know what I'd do if it weren't for the hope I have in Christ. Knowing and believing that my life is not my own makes this journey
bearable, even joyful. I repeat in my head multiple times a day, "for the glory of God." When I'm giving P his tackle box full of vitamins for breakfast, lunch, and dinner plus the 6 syringes of intestinal cleanse we shoot down him every single night..."for the glory of God." When I'm frustrated we can't just be spontaneous because of P's motor challenges and special diet..."for the glory of God." When I'm struggling with desiring a more normal life (whatever that means,right?)..."for the glory of God." And when I am feeling down for P and what I think he's missing out on..."for the glory of God."

Now, I am so aware that we just have a taste of special needs. We have only scratched the surface. So many moms and dads live out our lives plus so much more. They probably look at me and think I don't even have a clue.

I will forever be committed to these families that have been blessed with special children. Children that were wonderfully made in the image of their Creator. Children who I'm convinced know more about the Kingdom of God than we do. I always tell the Lord that no matter what Price's life looks like, I will care for and love on these children. I will pray for and care for the families. They must see Christ. I beg the Lord to heal our son and to give us wisdom concerning His care. I tell Him that no matter if He grants our requests or not, we will use this trial to glorify Him forever.

{And not to leave Nathan out on this Father's Day. He had some pretty tall shoes to fill when it came to being a father because my own dad was and still is the very best. But, I must say he's surpassed my expectations. He was made to be a father. Just the other day I overheard him telling P to crawl to him (as opposed to roll as we are trying to discourage it now that he is moving forward). When Price reached him, Nathan threw him up in the air and declared, "Good job, bro-bro. You are my strong boy." I am blessed to be on this journey with my best friend. He's one amazing dad.}

Staring

Lots of fun things to blog about. 8 month milestones, 5th birthday party, trip to Austin with friends, but I think this takes priority. While we were in Austin, Nathan called me to come look at Price as he was getting him from his crib after nap time. Price was standing up in his crib when Nathan opened the door. This is the stuff we dream about, friends. It's a moment that we have waited so long to see and a moment we will never forget. I could stare at this picture forever.

What we're up to

Price is out of school for 3 weeks and sometimes I think he's loving the freedom and then other times I am pretty sure he is bored out of his mind. Today he woke up with a bloody nose, which has never happened. And Street either threw up or had a horrible spit up. I am desperately hoping it was spit up. That all happened before 7:30am, before I had to get them all out the door to take Ellery to a princess camp she is attending this week.

Where am I going with this post? I'm not sure.

Price loves Blues Clues. It's like his first real favorite thing (besides Colby, of course). How awesome that he has a favorite and we are able to recognize it. As his speech therapist encouraged me, he is talking to us, just not with words. I am trying to be more aware of what he is telling me non verbally. He has so much to say I am sure. While a lot of focus is on the motor milestones like walking, I am convinced the most awesome milestone for Price will be speech. Nathan and I talk all the time about how we can't wait to hear what our boy sounds like and get a peak into what's going on in that big brain of his.

Yesterday, the kids all mercifully slept for a couple hours at the same time and I read the book, "Heaven is for real" by Todd Burpo. I had never planned on reading it, but got sucked in with all the beautiful imagery of heaven and this little boy's miraculous story about his short trip to heaven. It sure has me thinking more about heaven in general. One of the things that really stuck with me, however, was how this little boy couldn't stop talking to his mom and dad and others about how much Jesus loves the children. He made this point over and over until finally his parents had to tell him that they got it! It made me want to love my children better. It made me want to ask the Lord how to love them like He does and see them how He sees them. They are so absolutely precious in His sight.

I am always comforted by the fact that if Price never talks or walks or does this or that on this side of heaven, that he will one day. I know I am getting ahead of myself and I am believing that Price will do all these things on this earth, but in my darkest moments I am comforted by this fact. Sometimes I am so focused on helping Price reach this or that milestone or thinking about and planning for the future with him, that I forget to just love him well. Oh, how I don't want to miss this!

This is not at all what I planned to post today.

As I came back to post this entry tonight, I thought I would add that Street has now digested a small bead from a necklace Ellery made and some grass today. My goal with my 3rd now is to just keep him alive. Keep him alive for the day and I have done well, I am telling myself.

Guilt

My theme of the day..Guilt, with a capital G.
It started off with a trip to our natural doctor and it was nothing he said or did. It was just a voice in my head when we left. "You could have done this or that better and Price would not be where he is. It's your fault. Decisions you made for his care were wrong." Etc. etc. etc....you get the picture.

We got home and I had about 10 minutes to get the house straight and nurse Street before Price's speech therapist came over. He sees a new speech therapist at his school and since he is out of school for 3 weeks, she asked to see him at home. I was looking forward to getting to talk with her and watch a little of his session. She is extremely nice and I could tell, very good at what she does. She has a tremendous amount of diverse experience. She told me about the assessment she did with him to measure where he is at with speech. The word "developmental assessment" makes me want to run far away, really fast. It's like I know he is behind. It's not new information. But it hurts every time to hear it and to see it on paper. His therapist didn't make a big deal of it, just told me that she wants to improve on the 1% he is at currently. Yes, the 1%. (Good thing is he can't really get worse if I am looking at the bright side.) He has no words and he will be 3 in a few months, so obviously it's not going to be a stellar report.

She gave me a handful of things to work on...pictures to take of people, places, favorite foods, and toys, videos to watch with instruction, techniques to work on when he is at home. My mind was spinning, and really they are all such simple things. It's not like she asked too much of me. But the voice in my head said, "You don't do enough with him. You could be doing so much more. Do you even care?" Yikes.

Moving on I heard more of the voice. "All this work with Price is so unfair to Ellery and Street. They don't get enough attention. How will they ever live a normal life if you are constantly having to tend to Price and his special needs?"

Ellery's new I'm-almost-5 attitude didn't help at all. "Am I modeling this kind of behavior? Have I lost all control of my daughter? I am a horrible disciplinarian."

And further, "Poor Street. He's just on his own. It was probably totally irresponsible to have another child. How did I ever think I could handle 4 at one time because 3 is sending me to looney town."

And the internal dialogue continued throughout the day until I said, "Enough!" Guilt is not from my heavenly Father. Accusation and condemnation are the opposite of His character. I will make a choice to have faith. I will trust my days to Him, the author and perfecter of my faith. I will trust that each day He will be the one to supply me with exactly what I need to take care of these precious 3 entrusted to my care. And it will be enough. I will trust that He made each one of my kids with the other in mind, knowing their exact needs and heart. I will trust that our family was so perfectly and {very} creatively knit together.

I will also see what is RIGHT with my son, instead of what is supposedly wrong. I will look at him through the eyes of his creator. There is so much that is SO VERY RIGHT with Price.

"The God who commends and cultivates our faith will sometimes lead us into painful places, into unreasonable places, and into places that simply do not make sense. Why? Because real faith has to outweigh our emotional comfort, our human logic, and our passion for understanding. When it does, the Object of our faith has become the most important thing in our lives." {Worship the King by Chris Tiegreen}