House of Krause

Several years ago my dad helped me build a garden. Oh, who am I kidding, He built it. I mostly stood around, day dreaming of all the wonderful things I would grow. Should be easy just plunk a few seeds in the ground, water, and presto, we’ll be eating fresh veggies in no time. Well of course it took me several tries to figure out things just aren’t that easy.  Mostly I find myself fighting with weeds and looking for bugs that are putting huge holes in my plants. Every year my dad and I have our annual tomato competition, and every year I loose. Despite my best efforts of finding the perfect soil, cheating and planting before him, adding fancy sprays and grow juice. I still never win. I’m trying to get it ready for spring planting again this year and I have spent hours just trying to prepare it. How can an eight by four foot patch of dirt be so much work. It’s been an on going joke as my Dad has been getting his own garden ready. He’s spent quite a bit of money and spent much longer than me getting his going this year. He wanted to try his hand at potatoes. Now we figure the money and time he’s spent, he could have just bought 30 pounds of potatoes that would have lasted him all year! I have to say I’ve never grown anything spectacular but my garden has become my therapeutic thinking pad. It’s there that I find myself more angry and more at peace all at the same time.  I find more and more symbolism as it relates to my life. I’m pulling weeds and I’m thinking these are like sin, you let one get away and bam before you know it they are sprouting up everywhere.  Planting that little tiny seed and having faith it will turn into something great. Feeling that satisfaction when things start to bloom. Having an unexpected surprise when some random thing takes off and grows into something glorious. And also realizing despite all your best efforts, sometimes circumstances just don’t allow for a good harvest. It is there that I find myself talking and crying out  to God… It is there that He reminds me I am here, I am here, I am here! I think it’s interesting the bible talks so much about planting a garden. After all, All of life began in the garden. God is the ultimate gardener!

Jesus says,  “I am the true vine, and my father is the gardener. He cuts off every branch in me that bears no fruit,  while every branch that does bear fruit he prunes so that it will be even more fruitful.”

I spent the last two weeks looking through Luke’s records. Trying to organize them and get them together. Today we had a very important doctors appointment  with  a Neurologists from CHOC hospital.  This past week I’ve written several entries but could not bring myself to post them.  The doctor suspects Luke is having seizures. I never knew seizures came in so many forms. I always thought of the shaking kind. The type the doctor suspects Luke is having is called Absence seizure. It appears as though the child is zoning out or day dreaming. And actually is perfectly still. Lukes had some episodes that I have had a hard time getting him out of. What worries me even more is the doctor said seizures are not a disease in itself,  it’s always secondary to another existing condition. So begins another series of tests for Lukey. I don’t remember ever being so scared in my life. There is no worry like that of your child. The last couple weeks have been almost surreal. Just watching every little detail of Luke and the kids playing… holding onto every moment….wondering if we are on the brink of discovering things for Luke are  more serious than we thought. I continue to ask for your prayers.  I look back in my life and see all the times God has saved me and rescued me, His Mercy has been so good me! I continue to trust in Him and remain strong in my faith. But my heart breaks for Luke and I feel helpless as a mother. More waiting and uncertainty.  Thank you for your prayers, we really need them. I hope I can continue to share when we know more.-Jen

John 3:16 For God so loved the world, that He gave His one and only Son , that whoever believes in Him shall not parish but have eternal life.

How quickly time fly's! From this to.....

This!! Happy 9th birthday Preston! I love you sweets....

This past weekend Preston celebrated his 9th Birthday! It hit me, in 9 more years Preston will be an adult! Able to make his own decisions in life.  Wow- that’s amazing, how time flies! I love him so much. Preston always has some new exciting thing to teach me(I always tell him, he’s much smarter than I ). He is a kind and compassionate boy. He is the one who showed me what it meant to be a Mom in the first place! Preston holds the key to my heart-Oh to be blessed with such a wonderful son.

Happy 9th Birthday Preston!

Everyone warned me not to see Marley and me.  We were going to take the kids at Christmas time but my Mom called and said “Please don’t go. It’s just too sad, at the end your 65 year old father was even blubbering and crying his eyes out!” They all knew how I felt about the greatest dog in my life- Daisy, yep a yellow lab! Well, Preston and Lily started a read-a-thon at school. They told me the parents were allowed to compete also. I got a crazy competitive streak to read the most of any parents (like I have the time with 3 kids and all Luke’s appointments to sit around and read all day). But anyhow, I decided to read Marley and me. Really how sad could it be? I already knew what happens in the end, it happens to all old dogs.  I could handle reading it by now. I cruised through the book racking up the minutes all along for the read-a-thon, which my kids tell me I’m not even close to being top parent reader, oh darn! So last night I get to the last three chapters.  I should have just gone to the movie! Reading it was even worse. I could only get through one paragraph at a time, then I would be crying so hard that I couldn’t see the book.  My snot was flying all over the pages. I would stop and get tissues only to get through one more paragraph. The kids were playing superheroes at the time and driving off the couch in our bedroom, I was completely oblivious.  Lily noticed I was a mess so she came over to comfort me. How silly I felt.  I was laughing and crying at the same time as we watched Luke jump off the couch into a pile of pillows, and then roll a couple times in sheer delight! I’m now convinced, I should have just gone to the movie, and least I could have just did all my crying at once, while the film still rolled. This one paragraph at a time nearly killed me! All the characteristics of the Marley dog were so much like my old girl Daisy!  Well anyhow what does this have to do with Apraxia?? I ran into the most wonderful programs! They are now training service dogs for children with special needs. Service dogs are no longer just for the blind. These are dogs that service children with Autism, seizures, hearing problems, ADHD, Downs syndrome, fetal alcohol syndrome, and Yes even listed Apraxia. Dogs provide a way of bridging gaps for children when they go into new situations. Other kids may not be able to understand an Apraxic child but everyone can understand the language of a dog! These dogs stay close to the Autistic child that may be prone to wandering off. Able to alert the parents! Some dogs may even gain the instinct to warn parents of an upcoming seizure in an epileptic child. I think this is just so awesome! Check out Man’s best friend.  And if your a dog lover like me don’t read the book, just see the movie!

http://www.4pawsforability.org/assistancedogs.html

Luke's excitement, shortly before he got knocked to the ground and licked to death!

Penny was small for about two days! She’s proving to be a sweet addition to the House of Krause!

Lily got to take Penny to Library time on Tuesday.  I’ve been reading Marley and Me, so we talked a little bit about the book. I think Lily has checked out every puppy book since the start of school, this was the day she’s been waiting for!

I guess Luke got bored, he took a nap on the big teddy bear!

It was so cool, at the Apraxia conference Nancy Kaufman invited the hand full of parents that were there to join her for lunch. They had so many questions for her!  One mom even drove over two hours with her son to catch a quick minute with her. She was so gracious to take time alone and talk with her.  Nancy was kind enough to go around the table and ask each person what their child’s story was.   I didn’t have to many questions, as I feel so secure that Miss Megan (Luke’s therapist) can answer my questions just as well.  I just listened.  I found a common feeling among the parents was hurt and frustration towards the Doctors and speech paths that had missed the Apraxia diagnosis. A lot of anger towards the regional centers for not sending in the right help.  A lot of talk spent talking about the past. I love what Nancy had to say about all of that…. Your here, The time is now, there’s no going back, get over your anger, and move forward!  She’s right. Wasting time on the past is going to do no good for anyone. Especially our children. I think we really have to remember that even still today not all schools are even teaching Apraxia.  And Yes, even speech pathologist may not have ever been taught or trained in the area of Apraxia. It’s unrealistic to expect Doctors to know. This is where our part comes in, to increase awareness of Childhood Apraxia of speech. Do your own research. Take printed information into your Drs. office so they can read through it.  Be proactive as a parent. You are the one who knows your child the best. Mothers have strong instincts when they know something is not right. Don’t allow your concerns to be dismissed. Seek additional opinions. By sharing information you might be helping another child in the future. But we can’t spend time holding on to emotions from the past. There is already enough emotions to get through today!

I remember a year ago when our journey began with Luke. They handed me a sheet of paper full of words and said circle all the words your son is currently saying. I stared at the paper for 10 minutes, then I turned to Paul and said “I can’t circle any, not even one!” I stared at my sweet silent son, who’s shirt was soaking wet from all the drool. I remember wondering if I might spend the rest of my life wiping his chin, and thinking-  what if  he never talks?? Today I spent my morning playing with Luke. I realized just how far He has come.  I am so happy to report that if they put that paper in front of me today I could circle all of these:

car, open, pop, go, no, purple, yellow, cook, bow, milk, pie, tie, poo-poo, girl, boy, ball, boat, juice, tie, bath, na-na, hat, arm, He now has a verbal name for everyone in his family. I thought he may never say Ma-ma, he not only says ma-ma, but likes to call me “MOM!” Along with his words his sign language continues to grow and expand.  His shirts stay completely dry. Drooling  is a thing of the past!

Childhood Apraxia is an uphill battle…. The hill is steep….We climb slowly….and sometimes we fall backwards……but we keep moving forward everyday!  I don’t know if it’s God plan for Luke to have a full recovery from this or not. Our family will have to cross that bridge when we get there. I know a lot of you are facing very uncertain realities, I just wanted to encourage you to look forward as hard as it is, try not to look back. And I know it may be years and years away, just want to let you all know now, that the day Luke and I walk out of therapy for the last time, and the wind is to our back, there will be a huge celebration at our house, your all invited!!!!!

God Bless you and keep you in His hands! Hold on to Gods promises, He will never leave you or forsake you, He is with you to the ends of the earth. God loves the Apraxic child!  And hold to the promise that all things will be made new, and all children’s glory will be revealed in heaven! Now that’s going to be a party  I don’t want to miss! Love, Jen

If you are following this blog, I encourage you to send me a comment or just simply the name of your child, so I can add it to my Apraxia prayer list. You can be certain I will pray for your child everyday! If you’d rather send it privately you can e-mail me at roselinks@yahoo.com