Sunday, September 29, 2013

Feeling Blessed!

As I sat tonight rocking my little baby boy and looking at his sweet face I couldn't help but cry. But they weren't tears of sadness or fear. They were tears of joy and bliss. I am overcome with emotion when I think about how incredibly blessed I am. I have two absolutely amazing little boys that God has blessed me with and a husband who works his butt off for this family so that I can stay home to take care of our blessings.

I think about my life over five years ago before I got the very special title “Mom”. I remember the day I took my first pregnancy test like it was yesterday! It was January 17, 2008 (yes I remember the date). I took three tests just to make sure it was real. I remember everything about the next nine months. The cravings, the couple hours of “blah” each day, I remember hearing the heartbeat for the first time and every time after that taking a huge breath of relief knowing the baby was safe in there, the first time I felt him move (I was sitting at my desk at work about to shut off the phones for the night. It was the night before I found out the baby was a boy). I remember it all. But the moment I will cherish forever is September 20, 2008 at 5:55pm, the first time I heard him cry when the doctor's held him over the sheet and I saw my baby boy. He was mine! I'm surprised my heart didn't explode because I was so in love. I never imaged what love felt like and it was more amazing than I could have ever prepared myself for. Matthew was the perfect baby! Perfect!! Only cried when he was wet or hungry, had the most beautiful smile, had the tightest little grasp. He was wrapped not only around my finger but around my heart! He was my everything.

It was only a short nine and a half months later when I took another pregnancy test (August 1, 2009...yep remember that one, too)! Only had to take one that time :) I had so many emotions going through my head...excitement, joy, fear, guilt. I was so excited for what was to come. I had so much joy that I would be blessed again. I feared what this pregnancy and baby would be like because everything with Matthew was a breeze. And I felt extreme guilt...was this too soon? What would Matthew think? Would he resent me because I didn't give him enough time with enough of my attention? I remember a good friend told me that Matthew will never remember the moments he had with just me. Instead he will always remember the moments he had with his best friend. That seemed to relieve all my guilt.

We would soon find out that this pregnancy would be much different then Matthew's. I won't go into detail but it wasn't even a month later that we found out things were not good. I found out that I am Kell Sensitized. I thought I had a lot of emotions when I found out I was pregnant again...whew was I wrong. The next 8 months were kind of a blur. I feel so guilty looking back while I do remember the first time I heard his little heartbeat I don't remember quite everything I like did with Matthew. I couldn't tell you where I was the first time I felt him move. I can't tell you all the cravings I had with him. I didn't sit and record him moving in my belly. Instead I worried and prayed...A LOT! I was a ball of stress and fear every week when I had to go in for the MCA Doppler scan. I was terrified when the Dr. told me that it seems a cyst has formed on his brain and we will just keep an eye on it. What does that mean? We did keep an eye on it and it didn't get bigger or smaller and nothing else was said about it to make me worry until I had a meeting with the neonatologist for the NICU and she said the words “cerebral palsy”. What?! Are you telling me this perfect baby boy inside of me might not be perfect after all? I had a lot of guilt. I did this!! What did I do to make God punish a child? Who had a treated badly? What had a said or done? Did I not show God how important he was in my life so He showed me? I was hurt, angry, upset, scared. Then one night I had a dream and in it was my Grandma and Grandpa Hays. I won't go into detail about the entire dream but my Grandma said to me “Don't worry. Everything will be okay” That was all she said and they were gone. I woke up with a huge weight lifted off my shoulders that day. Did I think my baby boy would come out cured and unbroken? Absolutely not...but I knew no matter what it didn't matter because everything would be okay. I had no idea how my life was about to change!

March 10, 2010 my baby boy was 36 weeks old. At 9:56am he was brought into the world screaming his head off :) He was immediately taken to the NICU. All I was able to do was give him a kiss and they whisked him away. That's when the whirl wind began. With Grant I remember all the visits to the NICU. Trying my hardest just hours after having a c-section to convince the nurses I was in no pain so that I could see my baby boy. I remember the first time I visited him and had to leave him to go back to my room. Then for the next 5 days making several trips to see him each day. But the moment I will never forget is having to walk out of the hospital and leave a piece of my heart behind. I remember sitting in the wheelchair trying to hold it together and be strong waiting for Ryan to get the car and they rolled another women up with her husband beside her carrying their new baby they were all smiles and bliss and they got in their car and took their baby home. I got in the car and sobbed and sobbed because my baby was in a strange place without his mom being taken care of by people he didn't know. For 17 days I walked into that NICU and walked back out without my baby boy. I called twice a day to check on him. Finally the 18th day he walked out with me! And that's when my amazing life with my two amazing boys began!

Fast forward to now! As I turn and look around the cluttered living room I see bullets from the nerf gun war Matthew and I had today, the guns lying on the ground where we both surrendered (okay I surrendered), the jeep and zoo animals tipped over from Grant playing with them earlier, the Halloween stuff scattered around the house from getting help from a 5 year old, dirty clothes that are lying on the step that were worn in all the fun we had today, and all the special equipment needed for Grant. And yes while I wish my house was clean and I wish I wasn't too tired to get up and clean it (writing this might be my effort to procrastinate on cleaning :) ) I know that what matters most is making the best memories I can with my two blessings.

So while I might not have thought that God knew what he was doing when he gave these boys to me I'd like to thank Him! Thank You for trusting me with your amazing creations. Thank you for believing that I am strong enough and for reminding me when I lay in bed sobbing some nights because I got frustrated with Grant or raised my voice to Matthew after having to put him back to bed for the 6th time that I am strong enough. Thank you for guiding me. Thank you for giving me opportunities to help and inspire others. Thank you for giving me family and friends that support me. Thank you for giving me a husband who is always there to wipe my tears and tell me everything is okay. Thank you for making me realize it's okay to cry. But mostly...thank you for giving me the rest of my life to kiss these boys every night and kiss them every morning when you bless us with another day!

Thursday, April 4, 2013

Completely Amazed!!

I have to start by saying that I have to have the best family and friends in the world! I am completely in awe at the generosity of everyone that has put a donation towards Grant's device.

Yesterday was the longest day of my life. We were waiting to hear news from the Cerner First Hands Foundation as to whether or not they were going to help with Grant's device. Finally at 4:30pm we got good news. They were going to contribute $10,000 towards the device!! I will be honest that at first I was a little heartbroken just because I'm so sick of my baby having to suffer and wait on EVERYTHING because no matter what it is when it comes to children with special needs everything is ridiculously outrageous. But then I was so relieved!! $10,000!! That put us so much closer to our goal.

So then my brain started turning and hasn't stopped. I posted the link to Grant's donation page with how much we have left to get and I was completely blown away. Just in a couple short hours last night we had already been given so much it was overwhelming. I put the boys to bed and went down to finish getting dinner ready for Ryan and I and as soon my feet hit the kitchen I burst into tears. I was filled with so much emotion!

Then this morning when I woke up and checked (expecting to find no change in the amount since it was 11pm when I last checked) I was astonished again to find that we had reached nearly half our goal in less than 12 hours!

I am absolutely blown away by the support Grant has received from people he's never even met! I want to thank everyone from the bottom of my heart! I am completely humbled.

Tuesday, March 26, 2013

Whew I can't believe two weeks has already gone by since I dropped Grant off for his first day of school. My apologies for it taking so long to update it's been a crazy 2 weeks.

Grant's first week went pretty good. His first day he didn't even cry when I left his classroom. He was such a big boy. Mom saved the tears for the car :) He had a rough day but that was mostly due to everyone not knowing Grant and Grant not knowing them yet. The next few days brought more and more tears when I dropped him off but all smiles when I picked him up!

The second week got a little better. The crying took a little longer to start. He made a friend and someone he really looks up to who is a little over a year older than him and also has CP. His new friend is Grant's inspiration who encourages him during their joint therapy sessions!

I love that my little man is going to school but it's still so weird those few hours that I don't have him here with me. He was attached to my hip for three years and now I kind of feel lost without. But I feel so good knowing he's in such great hands. 

Here are some pictures from his first day of school:

 I told you he was all smiles!

 His teacher and his own para!
 Yep he was happy :)

School picture day is tomorrow and me being a photographer this is the first time my child's school picture will be taken by someone other than me. I take the pictures at Matthew's school and get the pleasure of taking his but Grant's will be a different story! I have a handsome outfit picked out and can't wait to see how they turn out!

Monday, March 11, 2013

And the last page turns....

Tonight the last page in the first chapter officially turns and the chapter is over. This chapter was filled with so much emotion! From the very first moment I found out I was pregnant to the last kiss goodnight tonight I remember every second...every emotion as if it all just happened!

I remember the beginning...the excitement of being pregnant. The wonderment of what we will be having...the joy at finding out it was a boy...the images of watching our sons play in the front yard. Then the pure devastation and fear at finding out before our baby boy was even born that he would have Cerebral Palsy. Doing all the research...crying myself to sleep night after night...wondering what this would mean. How would Matthew handle would Ryan handle would I handle it.

Then he was here...his day arrived...I remember hearing his first cry...seeing that precious face peek at me over the curtain...having him laid on my chest and feeling the tears roll down my face. I remember the worry, fear, excitement and joy of wondering what happens next.

I remember the pain and anguish as I walked out of the hospital and half my heart had to stay behind. Waiting at the door as a couple was all smiles bringing their baby home and mine was still in an incubator with "tanning" lights on him. I remember visiting him every day for hours. I remember walking in and seeing that huge, elaborate needle taped to his forehead so that he could have his 7th blood transfusion of his young young life. I remember being taught how to use the apnea monitor that would be attached to him for the next two months. I remember the overwhelming emotion when we finally got to bring our baby home 18 days after bringing him into the world.

I would love to play out every event in his life this way but I think you get the idea. I remember EVERYTHING that has taken place over the last three years and one and a half days :) But what I remember most is all the smiles I have had spread across my face because of this amazing little boy that I have been so incredibly blessed to call MY SON. He has taught me so much in his mere three years. More than anyone could every teach me in a lifetime. He has inspired so many other people as well. We walk through a store with him in his grocery cart chair or kid kart and he gets more smiles than ignorant stares. Everyone says hi to him. Everyone smiles him. Everyone is touched by the way his face lights up!

This little boy has inspired me in so many ways. He has never ever given up. He has fought through every obstacle he has had to face with a smile and determination! He has every reason in the world to just want to lay around and cry and be upset all the time but he is the complete opposite! He is truly amazing!

So as I drop him off for his first day of preschool tomorrow I will be strong (I hope!) I will pray that he knows I am not leaving him...I pray he knows that I don't love him any less...I pray he understands what is happening. It's hard and it's my fault because the only people he's ever been left with are my parents and I am so scared he is going to think I am mad at him or don't love him as much because I am leaving him. But I know that he will grow to love it. All the ladies (teachers and therapists) already LOVE him just from the few times he's been up there and I now he will be in the best hands besides mine. But as I walk away I will be feeling that agonizing pain that I felt when I first left the hospital without my baby boy in my arms. And with that....we turn the page....

Three Year Check Up

My big boy had his three year check up today. I always go into any check-ups a little stressed out because so much emphasis is put on Grant's weight. Today was no different.

We get in there and of course he is all smiles flirting with the nurse. Then it was time to weigh. This is when my stomach gets in knots. My fingers were crossed. Last night I weighed him and he was at 19lbs 15oz (he's cutting his molars and hasn't ate much the last week) so I was just praying that he ate enough breakfast to get him over the 20lb mark. The scale was bouncing from high 19's to low 20's until finally stopping at 20lbs 1oz! I wanted to jump for joy but the nurse would've thought I was crazy. We get back in the room and she puts the numbers in the computer and of course I get the "Well he's not even on the chart" I just wanted to shout "I KNOW THIS!!" but just smiled and said "I didn't figure he would be." Then she went on her merry way and we waited on his nurse practitioner.

So his nurse practitioner comes in (who is amazing I might add) and looks at his chart. We are going over how much he's grown. Then we get to weight. She asks if any other specialists are concerned about his weight and I mention his developmental pediatrician is and that he started talking about a feeding tube. Then I felt the knife dig way down deep in my gut and twist and twist. I felt like the wind had been knocked out of me. She told me that it is a 99% chance that within the next year or two (but more than likely the next year) my precious, perfect baby boy will have a feeding tube. My heart stopped and I couldn't breathe but kept a smile on my face. She continued to tell me that it's not because he's not eating enough or not healthy or anything like that but just because he's burning more calories than he's eating and it's just causing him to gain weight way too slow. She said he could still continue to eat meals the way he does now that it would just be a used at night and as a sort of snack to give him a boost of calories. They way she presented it and the things she said it all makes perfect sense...but as a mom...IT SUCKS!!!

As a mom I once again feel like I have failed him! I feel like I have failed my baby boy again just like I didn't protect him when he was inside of me and couldn't keep the CP away. I feel like I should've done more...but then I did all I could do. This is tearing me up inside and I have tears streaming down my face as a type this. This CP was not Grant's fault! Why does my poor boy have to keep suffering...why does he have to keep pushing through obstacles...why does he have to keep trying so damn hard at everything...why can't he just get a break. With that being said...if the doctors all agree this will be best for my baby boy then this is what we will do. It will break my heart but I will never deny Grant of something that might make his life that much better! So for now I just pray...and cry...and get over this hump just like we have several others.

Happy Birthday to Grant!

What a birthday weekend! My little Grant Man turned 3 this weekend! I still find it so so hard to believe. I will get into the mushy stuff in another post...this one is all happy!

We had Grant's party on Saturday and it was a blast! Such a great turn out (thank you to everyone who was able to make it)! He had so much fun. He loves "big trucks" so I decided to go with a diesel truck theme. Little did I know at the time that diesel truck decorations were so so so hard to find. So I got my creativity going and manage to make some pretty cute decorations.

I hope you enjoy the pictures :)

 Pin the Wheel on the Truck :)
 Grant gets to go first
 The amazing cake by Linda (always amazing!)
 Singing Happy Birthday...he was all smiles!
 His helpers waiting for him to try to blow the candles out
 Ready for some cake and ice cream!
 Yep it was delicious!
 Opening his presents from his big brother and best friend!
 Love this ornery face!
 Come on in to the Truck Stop
 The goodie bags...they say Ma &Pa Truckstop(Sorry it's so dark)
Happy Birthday banner!

As you can see my birthday boy had a blast!

End of a Chapter

o this week has been quite the week...and it's only Wednesday! (just pretend I posted this on Wednesday!)

This week started the last week in the first chapter of Grant's life. That first chapter of Early Intervention through the First Steps program. What does that mean? That means my little bitty baby boy who was born 4 weeks early and weighed 5lbs 13oz is now going to be a big 3 year old and go to school. He will no longer be getting the therapies he has been receiving through First Steps. All the tears I've cried this week have been mixed tears. Tears of sorrow that we will no longer get those weekly visits from the amazing women in Grant's life but at the same time they are tears of joy. Joy that my Grant Man is going to be going to school! He has come so far in 3 years and he deserves to take this next just isn't ready! :)

Monday we said wait not goodbye...SEE YOU LATER to Grant's magnificent speech therapist. She has spent two years loving my little boy as if he were her own. You talk about her and his face lights up! She has gone above and beyond the duty of a therapists by helping endlessly to get Grant a communication device that insurance denied him. She even went as far as filling out an application for a grant to get the device and continuing to follow up. She has been coming into our home everything other week for the past two years and we will miss her terribly!

Then Wednesday we had a very emotional day. We started our morning visiting Grant's school, dropping off enrollment papers and meeting his new para that will be with him the entire time he's at school. I am truly so excited for him to start school because all the ladies he will be working with are so excited for him to start. They all seem so great! But it was very emotional walking in knowing that in less than a week I will be dropping my baby boy off and leaving!

Then after that we saw his amazing physical therapist for the last time. Again I say the last time but maybe I should say the last time for therapy :) She has been seeing Grant since he was two months old! It seems like forever ago but yet it seems like just yesterday we were meeting her for the first time. She has been so so incredibly great with Grant! She makes him very happy (unless she's making him stretch) :) And she too has loved Grant as if he were her own. She has been patient during his crying fits and she knew just how far she could push him (in a good way). She worked with First Steps in making sure he got all the equipment he needed and we are so thankful for everything! Three years went by too fast and we will miss her weekly visits!

Then immediately following that was the last visit with Grant's inKredible occupational therapist! Grant was about 7 months old when she started seeing him. I can't even tell you the look on Grant's face when we talk about her. She has been not only a therapist to Grant but a therapist to me as well :) She has helped me with idea after idea on how to help Grant this way or that way or how to adapt this so that it's better for him. She has also loved Grant as if he were her own. She has done things for Grant that not most therapists would do. She has seen Grant at his best and seen him at his worst and still continues to love him. She helped comfort me when decisions were hard and always helped me see the up side. We will miss her something fierce!

After the last therapist walked out the door on Wednesday I sat in the bathroom and cried. I cried for a number of reasons. I cried because my baby boy is graduating from First Steps which means he's getting older, I cried because I am going to miss those ladies. For the first time in this journey I felt all alone. I felt like I had no one. It was the craziest feeling. But I know that in the next chapter awaits things that will far exceed the first chapter. There will be good and yes there will be things that aren't so good but with it all comes the next chapter in the book of Grant!