Memories

I just found this picture a little while ago. Daddy's glasses on Micah! The things we do to our kids.

God in my life

Now recently I had a comment from someone on the post I did called Why, this comment was anonymous and it said that a 5 months this baby boy was taken from his family by SMA. The person commenting on my post said that they no longer believe in a higher power because of it. This is sad to me. I just want everyone who reads this to know I am just being honest with how I feel about this whole thing. Raw emotion and my daily life. Some days are better than others and some days I just need to vent. I believe God is very real in all of our lives and especially in mine. I have a beautiful son. Yes he is very sick but God trusted me to be his mother, to give him the most love he could receive in his short life time. I have been entrusted with this beautiful, strong, smart boy that has made my life better. They are so right when they say good things come in small packages. I laugh when he laughs, I can comfort him when he cries and when he needs something he trusts me to fulfill his basic needs. I may not be able to do these things in the "normal" way but I still do these things. I have gotten to know my son better than anyone. Anyone except God.

Now don't get me wrong I am not happy that my son is sick, I don't understand why my son had to be sick but I trust God and I know He has a plan in this. I may not think it is fair or easy or even agree with the outcome but I know that God loves me and my family more than I love them and therefore I trust Him. I have moments and days where I question every aspect of my sons life and what did I do wrong and Why and how come and every question you can think of. That is just my nature. Every day that my son is here and comfortable, every smile, every giggle, every time he rolls his eyes at me I am grateful that I have this child. My son has changed the lives of so many people in this world just because he is who God made him. He has taught lessons like not taking for granted the time you have with your loved ones, good health, beautiful babies and parenthood in general. My life is not by any means easy but it is my "normal" and I am okay with that. I expect God to make all of this right in the end. Now that may not be right in my eyes but it will be right and fair and just by God's standards.

I pray for this individual who wrote me and told me that they have lost faith because of SMA, I pray that you will no longer let doubt in God rule your life. God allowed Satan to take everything away from Job and kill his family and loved ones. By the end of Job's story God had blessed him 3 fold. Job had more love, food, and things that he ever though he could have. Please have faith and trust God. He hurts when we hurt and He wants to help us through these things. It may not ever seem like it will get better but He promises it will. I don't want my son to die but because we thought we were going to loose him in the hospital in December my husband and I take comfort in the fact that he will never have been lied to, cheated, led on, led astray, had his heart broken or been let down. I love God for that. Take this for what ever you will it is just my heart. I don't even know if all of this makes any sense!

Ahh My Boys!

So today Micah and Joseph had a great day of laughing and bonding. Joseph just hasn't had the same relationship with Micah as he did before the hospital month long stay but their relationship is getting closer again.

A very good day!

So today we had a pretty good day. Micah spent a good amount of time upright sitting and horsing around with me, Joseph and Granna. I was so proud, I took him to the bank with me tonight and I didn't even take his Bipap or his pulse-ox just his suction and he did great! All the girls at the bank were loving seeing him again and he was loving the attention. Thank you God for such a good day.

Our prayers go out to Beau's family in Australia. Beau was 10 months old and earned his wings yesterday. His battle with SMA is over but never forgotten. Please pray for this family.

WHY?

I know God is in control of all that happens in my life and I trust Him to know just how much I can handle but I still am mad and sad and do not understand why. I look at some of the SMA kids on the Internet and the sweet families they have and I cant help but think how unfair this is to all of us. Now I know no one ever said life is fair and I know God has a purpose in all of this but I hate it. Every Mom and Dad on here I see with their beautiful intelligent and sick child loves them deeper than I can even explain. But then we have to because we may only have a short period of time to love these children. I don't know why I write this except to vent. I am so upset that there are people who have children and don't want children or maybe shouldn't have anymore children and even people who smoke and drink and do harm to their own bodies while pregnant and will continue to have normal healthy children. But enough I love my babies and that should be enough for me. I am and will always be praying for all you SMA families out there and just know I hold you all in a high respect because this is very hard. Rachel and Kim too!!

The Vest

We just started another machine. This one is called The Vest and I think I like it. It is a form of CPT and it works very well. Of course it is a hospital grade machine so it better but if I let Micah hold a toy and then hook him up he does fine. Here he is holding his new squeeze rocket given to him by our friend. He loves it.

WE FINALLY GOT IT!

Yes we finally got our stroller. I took about one day to play with it and figure it all out. It is not like all the strollers out there it has so many things that can be put on and taken off and adjusted so I am still learning. It fits him very well and he seems very happy in it. I love that he can see so much more when we are outside. Thank you to everyone who had a part in helping us get this stroller.

HA HA!!!

So Joseph is really into swords and knights and dragons so I found some foam shields in the dollar basket at Target and he and Daddy have been dueling!(Yes Daddy's sword is a hockey stick and Joseph's sword is a drum stick!) BOYS

Happy Easter!

HAPPY EASTER!!!

Stroller!?

So just a quick update on the stroller thing. We do not have the stroller yet, but it has been ordered so I think in about 2 weeks we should have it!!!!

Some boy time!

Joseph, Micah and I went to the park this evening. It was a little cold but it was a beautiful evening and so much fun to be out of the house with the boys. I laid Micah on the grass and he was picking at the blades and rubbing his hand in it. Joseph was all over the park burning energy. I love how I tell him to smile and he gives me "rock fingers." I think Micah loves to be outside, he always is just content outside and smiles. This pict is a little off because I took it of us,

but it is cute of the boys.

Happy 10 month birthday Micah-man!!

Today was Micah's 10 month birthday !!! Yeah Micah. Poor baby he had to get his RSV shot and wasn't very happy with me.

My broken dream

When I was young I never really wanted to be anything but a mommy. I love kids and really just wanted to find a life where I could be a stay at home mom. I dreamed of having three or four kids close enough in age that they would all be able to play together and have a lot of the same friends. Now I know our dreams as kids often change or it becomes apparent that we were not being realistic about our lives, but that is exactly what I wanted.

I met my husband when we were twelve or thirteen and have loved him ever since. I did have a few years in my life where I left and did some really stupid things and made a bunch of bad decisions, but I would never change a thing. Don and I are who we are now because of the things that we have been through in our lives and I love who we are together. I often think that we would have taken for granted our love for each other if we had not had our separation. I learned during that time what not to do and how I wanted to be loved. Don has always loved me like that. We got back together one weekend when I had come home from up North to visit and his mom had called him to tell him I was in town. He came back to Ojai to see me. I think both of us knew right then and there that we would be forever.

So one night he had me over to make me dinner because I had kind of a hard day at work. He cooked me really good pasta and was so sweet to me. He got down on one knee and purposed to me but when he opened the ring box there was a fruit loop in the box!! Earlier in our relationship I had told him I would marry him even if he gave me a fruit loop. So he did!!Then after we laughed I ate it and he told me to reach under the table and get my real ring.

We got married at the top of beautiful Elings park in Santa Barbara on the most beautiful day in October and it was like a fairy tale. We have so much fun together, we laugh, we just enjoy each other. We both worked hard for the first few years of our marriage and then decided to think about starting a family. After awhile of complications we found out that I was pregnant and at 8 weeks we lost the baby. It was devastating to say the least. A few months later we got the okay to start trying again and within the first few months we got pregnant. Toward the end of my pregnancy we decided that I could be the stay at home mom I had always wanted to be.

Joseph was(is) an amazing child, he did everything early. He walked at 10 months and but walked I mean he ran!! Time flies even faster when you have children. months begin to feel like days and he grew so fast. I loved every moment I got to spend with him. (Now here comes the dream I was talking about earlier)When Joseph was about 10 months old we decided that we would start trying to have another baby. This time we got pregnant again and were so excited because Joseph and the baby would be 18 months apart and it would be PERFECT. At 8 weeks right before my drs. apt we miscarried again. that morning I was alone I remember crying in the shower asking why again, why me and how could this happen again. I tried to call my husband but he was out playing golf and I wanted him to enjoy it. Anyway after that we decided to just let life happen.

Right before our 5th anniversary we found out that we were pregnant again. this time I had a prefect pregnancy no problems no complications. When Micah was born he was beautiful. Different than Joe, he cried and screamed it was awesome. Joseph just looked around when he was born quiet and calm. At two months our world changed forever and my dream was broken. We were told that something was wrong with Micah. It wasn't until he wound up in the hospital at 5 months that they got it right and we knew that our baby wasn't going to be a normal healthy child.

So long story longer, last night we were watching Marley & Me and it hit me hard how broken my dream was. The husband and wife have three beautiful kids 2 boys and 1 girl, the boys were sitting by each other on the bus talking and I just started crying and my poor husband asked why I was crying. All I could say was "that is what I wanted for Joe." I wanted him to have a brother that he could play with and have fun with and run with and wrestle with and I know now that that will never happen. I try not to think like that but in my heart I can't help it. I love my family more than anything and it hurts that Micah is sick.

The Stroller!!

So Monday I called the insurance company and they told me they had authorized the whole stroller!! So I called the company to see if they were working on it and finally Tuesday they called me and told me that they had received the auth and were going to order it today. THANK YOU GOD. So in about 2 weeks I think we will have a stroller made to carry all the things we need for our little Micah. Thank you to all the people in our lives that have helped us with the money we needed for our part of the stroller. I will let you all know when we get it.

Beautiful Day

Saturday we took Micah and Joseph to the park in Ojai for a BBQ fundraiser for our church. Micah loved to be outside and it was so good to see everyone. Joseph loved to play, play and spent the whole day eating tri-tip and jumping in the bounce house.