Life Lessons

Lesson # 1

Malachi-
     Today I watched you struggle trying to get onto the couch. You pulled and grunted and screamed and got no where. You looked to me for help but I couldn't help you. Im sure you thought I was being a meanie and if you could speak Im sure you would have told me you hated me. You wanted SOOO badly to get on the couch and you simply failed. I want you to know that we ALL struggle with something, it's a part of life. I am, for example, a HORRIBLE cook and even though I have tried and tried, I still can not make a descent meal (I apologize for the less than appetizing meals you will endure when you are older). You see, I love you VERY much and want you to succeed in everything but you will never succeed on your own if I do it all for you. I'm trying to teach you to be independent (big word for you right now, but when I am long gone and you are reading this, you will understand). You have to learn to do things on your own and you do that with trial and error. Although it kills me to watch you get so frustrated, it's something I just have to do. Remember we went through this after your stroke? You couldn't hold your cup and wanted me to do it all the time for you. After a few days of showing you how while helping you, I stopped. Within a matter of hours you figured out how to hole the cup all by yourself. I still remember the smile you gave us when you realized you could do it. You were so proud. One day I will see that same cheeky grin when you master getting on the couch, I can't wait. But until then you must struggle and try to remember that their are lessons to be learned along the way.

I love you little man. Please never give up!

Life lesson #1 was brought to you by mom.

The first time you held you cup all by yourself a week after your stroke!!

June Cleaver

I'll admit. I am not the most organized person in the world. So with 2011 (YIKES) quickly approaching, I figured I MUST get my house organized so that I can start my new years resolution off right. Its early to being thinking of the new year, and I'l be honest, I HATE new years resolutions. So what makes 2011 different than any other year and why am I getting a head start on my unheard of resolution? The answer is simple...my house is cluttered, my house if full of things we don't use and my house is a cause of much disorganization. I want to be a super mom with dinner on the table when Josh gets home from work. I want the house to be clean and organized for him and I want to do his laundry and put it away simply to make his life easier. I LONG to be like June Cleaver, chuckle if you must, but that woman had it together. So 2011 at our household is going to be different. It will be organized and clean with closed washed and put away, not laying on the floor in the laundry room, dinner will be on the table at least 2 nights a week when josh gets home and the weekends will be free of laundry and cleaning, we will have all the time in the world to be together as a family, no chores, just fun. Ahhh..I cant wait. I will take pictures as we progress through our house, cleaning and organizing each room. I would take before pictures, but Im not that brave! hehe

Wish me luck!

Good will bag total: 5 (just clothes from our bed room we are getting rid of, the down fall of a large closet, you can fit more clothes in than you can ever wear!)

Short, Short....ARMS!

Elijah is not as gun-ho about gross motor as Malachi is/was. I hate to say it, but at almost a year old, Elijah is not officially sitting up yet. I swear its his blasted arms that are holding him up. They are short, very short, and although I LOVE how un-proportioned they are, it only makes his quest for stable sitting nearly impossible. Who would have thought arms would play such and important role but my PT assures me they are imperative. Since we can't change the length of his arms, or his drive to sit like a big boy, we have to resort to other measures. The step stool has become our best friend and when not being used as a torture device by his bis brother, we use it for Elijah to prop his arms up on. Giving him the extra 5 inches in length has surly been to his advantage and today, for the first time ever, Elijah sat, without the use of the step stool for a whopping 10 seconds. He got a small taste of the good life and I assure you he will be longing for another taste soon. I hope this time it lasts long enough to catch on camera.

Strangers

We are always told stranger danger. It's a catchy way of reminding our children that strangers can be dangerous. Well even to this day I am leery of strangers, especially the creepy ones we meet at the mall and ask if my children are twins...come on people! This past week I was contacted by a stranger on Facebook. Yikes, I got the goose bumps. She wanted to be friends and sent a little note along with her friend request stating that our children had similar stories. I did something i NEVER do, I accepted a strangers friend request on Facebook. This lady now had access to pictures of my family and most importantly my innocent children. I decided to send her a message and after a few casual messages back and forth I found out that her 2 year old daughter had a stroke on October 1st. Then it all came flooding in. I had recently posted Malachi's story on a pediatric stroke awareness fan page. So while I was sitting in the waiting room at Malachi's eye appointment I began to cry. All those feelings of hopelessness, fear, and worry came flooding back in by simply thinking of what this stranger was going through. She messaged me again and said the location of the hospital where they were at. I sat in my chair, completely unaware of my screaming children and realized we were AT THE SAME HOSPITAL! I wrote back and said that I was there and if it were alright with her, we would come for a quick visit.

After we were done with the appointment we headed up to the PICU to see a complete stranger who is in the same place we were only a few months ago. I no longer feared this woman but instantly felt a bond with her. Her daughter only a few months younger than Malachi laid in her crib sweetly resting. Her room adorn with balloons, pictures and cards from family and friends. After a little while of visiting we left vowing to get together when her sweet little one is feeling better. We are so looking forward to that day.

 I love that we could be a source of information, encouragement and hope for her and her family. God truly worked that day and I still can't believe this stranger will now be a friend for life.

Please say a prayer for sweet J. She has come a long way but her journey is just beginning. Continue to fight, work hard and never give up and you to will beat the stroke!

I fail

Well we are about 1/2 way into October and I have already failed on my goal of posting each day this month. Oh well, no need to cry over spilled milk (not that Im crying).


Phew, I feel like I can finally take a breath, this past week has been crazy 3 doc appointments, 4 hours of therapy all on the same day and we have spent 10 hours in the car in the past 3 days. Monday we had Malachi's appointment at the feeding clinic. It went wonderful, we got some answers and some new things to work on. Thankfully she thinks this is something he will overcome. Great news!

Thursday we went to the eye doc. He said that his Rx hasn't changed. He is near sided, which we knew, but his right eye is twice as bad as his left. He is worried that he will at some point stop using his right eye which means it will start crossing and become lazy. So he suggested we work on the glasses (ugh, this is NOT going to be fun as Malachi HATES anything on his head or face). We will monitor this closely, surgery is an option if it gets to that point. We are praying it doesn't.

Today we headed by the lake for Malachi's first dentist appointment. I have been dreading this for weeks. Malachi HATES brushing his teeth (at least for me, Josh says he does fine for him, typical) and I knew it would be a fight to get him to open. The dentist specializes in kids with special needs, so that was great. They knew just how to get him to relax and open. And the best news...NO CAVITIES! Woo hoo! We have thought for a while that Malachi may have an extra tooth. After an x-ray we were informed that he is actually missing a tooth. This is actually good because his teeth are already crowded and the missing tooth will allow for extra space for the others. She said it's nothing to worry about. We also learned that the "extra tooth" we saw was not extra. This silly little tooth that looks so out of place is actually fused (below the gum line) to it's neighbor. Talk about jacked up teeth. haha Just blame it on the Down syndrome. Like the missing tooth, she said this was nothing to worry about. He goes back in 6 months for another check up. Elijah will go at that time too!

Now your caught up. Have a great weekend. Stayed tuned I have a VERY cool story to share tomorrow!

A day to remember

The 2010 Buddy Walk was AMAZING!! The weather was perfect (88 degrees, last year it was 58), we were surrounded by the best family and friends we could ask for, we feasted on yummy food, we raised money for Down syndrome awareness AND we got some exercise! ha. It was a day full of memories we will take with us forever! Thanks to all who donated and all those who walked with us!! There are no words to express our thankfulness for you love and support!! We are truly surrounded by the most amazing people ever! Thank you, Thank you, THANK YOU!! Here are a few pictures from the day!

Tomorrow Malachi has an appointment with the feeding specialists at the children's hospital (2hours away, ugh). We are hoping to get some answers as to why this child will not eat solids. Can't wait to update you tomorrow on the results, pray for positive ones!!

What my kids are...

My Kids are...

Loved, so loved.

Strong, overcoming so much

Silly, laughter beams from their mouth

Smart, they are able to enjoy the sweeter things in life

Willing, loving everyone and everything no matter what

Challenging, it's not always easy

People, despite what other may thing

Worthy, of so much more than many will give them credit for

Beautiful, from their almond shaped eyes to their sandal gap toes

Gifted, their presence can change your mood in an instant

Encouraging, the troubles in your life seem like nothing compared to what they go through

Blessed, so many will be on this journey to cheer them along

Stubborn, they are not always happy and easy going

Lastly....

They are a gift, sent to us to teach us, love us, challenge us, encourage us and bless us. Everything we do for them, they do for us  x10, not because they have to but just because of who they are. They are a gift that we are so unworthy of but so thankful for. 

Thank you my sweet boys for being nothing more than you. 

Love, Mommy and daddy

Gotta keep movin'

Im a little disappointed by the lack of support I got regarding my last post and my FB post for those of you heading here from there. BUT, the good news is that I am going to do something and the only person I am held accountable to at the end of this life is God. So join me or not, it's your choice.

On a Much, MUCH lighter note...it's Buddy Walk weekend!!! Woo Hoo. Wish all of you lived closer so we could meet in real life and I could love on your sweeties whom I've grown oh so found of!! Needless to say, we will have another HUGE group this year. Malachi and Eli will be the star of the day and I will beam with joy that my children are so loved by so many!! Not to mention all the money we are raising for NDSS!! It is sure to be an awesome day, I will be sure to post all about it!

After 4 hours of therapy with my boys today, I am spent. Good night, sweet dreams my sweet sweet friends!!

I hope this breaks your heart

 My hope is that this post will break your heart, leave you in tears, put you on your knees praying and allows you to look into you're "perfect" life. I want you have a desire, so strong, to do more. I want you to ache for these people, I want your every waking moment to be consumed by the images of their sweet faces. I pray that God puts a burden in your heart to stand up and fight with all your being for the respect these people deserve. Will you allow yourself to step out of the box, your comfortable, safe box for just a moment to watch the following video? Or will you click off this page and going on living your "perfect" life? Or even worse, will you watch it and still do nothing?

Watch the video now. 

Are you sick to your stomach? Are tears flowing down your cheeks? Are you moved to action?

Check all of the above for me please.

I will do something. Will you join me? I don't know when and I don't know how, but I will.

God use me. Use all of me to help these innocent children. I am ready, I am willing and I desire to do something more. I know you made each of those people to be more than a body laying in a crib. They are perfect in your sight and an amazing testimonial to your power. Raise up other who desire to help. Surround me with people who yearn to change lives, to get out of the box and to do something. Give me the words to say to those who turn a blind eye. Give me the strength to go and do. Only you can move this mountain and only you can set the journey. Show me, show us. Keep those safe who are already there, left to die. Give them strength to fight and courage to remain until we come.

Car-seat frustration

As much as I LOVE the ease of Elijah's infant carrier, my elbow needs a break. So we are in the market for a big boy car-seat for my little love. And, actually for my larger love. Malachi currently rocks and Evenflow Advanced, which I like, BUT, it's HUGE and takes up a ton of space. Since a mini-van is not a financial option we have right now (although my little suv is nearing 112,000 miles) we a looking into other cheaper options. We are trying to decided between and Britex Roundabout 55 and a Combi Coccoro. They are about the same price which makes our decision even more difficult. Has anyone out there experienced either of these seats? Give me advice and help me choose...or better yet, just make the decision for me. K? thanks! :)

Big boy

My littlest love is not looking so little anymore. 

I LOVE his smile and the way his little nose turns red when he laughs.

I LOVE his easy going personality and the fact that he is almost always content.

I LOVE when he talks me while we are snuggling before nap time.

I LOVE his big brown eyes and they way they sparkle when he looks at his daddy and big brother.

I LOVE the way he wakes up with crazy bed head. 

I LOVE Elijah and EVERYTHING about him!!! He is perfect, just the way he is!

Freedom

As many of you know, Malachi LOVES to sign. His love goes so deep that he often chooses signing over actually using verbal words. We love that he can communicate so well with those chubby little hands, but audible noises would be much appreciated. His favorite signs, you ask?  Cow, Eat and Chicken. Little man is so smart, little does he know that you can eat chicken and cows! ahaha

His love for animals is what inspired us to take a trip to the Milwaukee Zoo. His favorite exhibit was the fish and turtles. I think a fish tank is in our near future!!

But the one thing that tickled his fancy the most was walking and the freedom it brings. I LOVED watching him explore. His hands touched everything (don't get me started on all the cooties we were exposed to), his eyes scanned around him and the little wheels in his brain were going faster than ever! Freedom never tasted so good!! You deserve it little man, thanks for fighting!!

October!!

Dear Family and friends,
     We can hardly believe that it's already October! So much has happened this past year. Many of you know that October is Down syndrome awareness month and the past 2 years I have participated in 31 for 21 where I commit to blog each day to raise awareness. This year is no different. I will be posting basic information, fun stories, pictures and our own experience raise 2 amazing children with Down syndrome.

    Malachi is now 2 and full of attitude! He loves to answer questions with "yeah" or "no." He is officially walking and the joy he feels shines through his smile. He is proud, I LOVE to watch that!! Brain surgery this summer went great and he is recovering quickly. We see less and less side effects of his stroke and are hopeful that he will make a full recovery. We will go back to Boston in the summer of 2011 for a follow up angiogram to see if the surgery was successful.

     Elijah will be 1 next month! Yikes! He is the most content child ever!! His smiles and giggles happen more and more and his personality is coming out. He talks all the time and eats even more than that!! This past week he has begun crawling and will no longer stay in one place. His adoption was finalized in Aug. and we were blessed enough to have my mom, brother and best friends there.

     Thats all for now. Please check back daily and let me know you were here.
                                                                                                                              Erin

Ps. For those of you that want to share you love for Elijah and Malachi on Facebook, feel free to save the following images to you desktop and use them as your profile picture.