Philly Trip: "You Are My Sunshine"

During our speech in Philadelphia, we mentioned how Caleb was surrounded by friends and family before he went into the arms of Jesus.  We sang "You are my sunshine".  Our son Devin, use to sing this to Caleb so often.  After we were done speaking, Gianna Jessen, who was also speaking at the Pro-Life Conference asked if she could sing this song in honor of Caleb.  We were so touched and happily said "OF COURSE :)".  Gianna's story is absolutely amazing too.  She is a beautiful person with the sweetest spirit.  Danielle Rose, who travels the world as a Music Missionary joined Gianna in singing.....what an honor it was to have these Godly women sing to our precious son Caleb.  They are the kind of women that you want to hang out with....always.  Getting to know them brought us so much peace and healing.  There aren't enough thank you's to express how much it meant to Steven and I.

 "........ coming from an orphan's background, it was the most amazing thing to watch a father weep for love of his son. i have never seen that, we hugged each other."  This is part of a post that Gianna made on her page that day.  We cannot express how much this meant to Steven.  Often father's are left in the background and people forget that they hurt too.  Thank you so much Gianna. 

Philly trip: Speaking at the Pro-life conference

Steven & I were asked to speak at a Pro-life conference in Philadelphia.  We were honored to be asked to be a part of such a wonderful event.  However, we weren't sure that we were ready to make this trip.  It is still so new in our grieving for our precious son.  But when we saw the title of the conference we knew that this could only be orchestrated by God "Born This Way? Made This Way...Wonderfully (Psalm 139)"  Psalm 139 is what we used in all of Caleb's parties, Celebration of Life, etc.  And how often are you asked to go across country to speak at a conference, especially by a caring and compassionate Dr.?  So we did.  We met some of the most amazing people.  I would like to think that this conference was about making a difference in other people lives...and we pray that we touched even one person.  But I truly think this was more about us this time.  God knew we were struggling in this part of our grieving process. Lots of doubts, lots of questions and a lot of saddness.  He brought these amazing people into our lives that were part of the conference...it was like God brought them together and we were surrounded by this huge hug.  For that we are so grateful.  I have much more to write about...so much more to share...but for now I will share the video of us speaking.  I will tell you that I had this whole speech prepared in my head on what to say...but before we went on, they played the video of Caleb.  Steven & I lost it.  So when we went up to speak, I just had to throw everything out the window and speak from the heart.  It was so hard because our hearts are still in a million pieces.....but we also knew we were surrounded by so many amazing people that were there to support us...and each other. I am especially proud of Steven for getting up and speaking....this I know was hard for him.  But he did a beautiful job....I am blessed to  be walking hand in hand with him in this journey.  We continue the healing process.  I will write more on our experiences on this trip...sharing more videos & pictures.  We are so incredibly blessed.

I got his in the mail today from Caleb's buddy, Lane (35 months old, also has trisomy 18). I LOVE IT. The Caleb Bear is the same weight as when Caleb was born... 6lbs 5ozs. It came with a cape and blanket. I cried..it was like snuggling with Caleb again. I'm going to snuggle with him tonight. He is in the crib right now. Who knows I may just jump into the crib with him!!! The bear was made by another special mommy Katie Weaver. Thank you so much Alisha and Katie .....I love you

My first dream of Caleb....

Last night I had a horrible nightmare...I kept screaming "no" & hugging Steven. I don't remember what it was about but Steven said it lasted a while. I do remember the feeling of panic. I fell back to sleep. Then in the morning I had another dream...this time I remember so vividly our sweet baby Caleb. He was smiling soooo big & sitting on daddy's lap...but he was breathing hard & could see his chest pulling with each breath. I felt like he was saying to me that he was alright. His big smiles always gave me so much hope that everything would be ok. He was absolutely perfect to me...I never focused on his ailments....always celebrated his achievements & milestones. But he did have some issues & he was reminding me of that....that he put up such a great fight. He did so well & overcame things that just amazed me. But now he can rest & I have to find comfort...peace in that somehow. We are so proud of him & love him so very much. I know satan is trying to steal my peace & fill me with doubts & saddness. I won't let him do it....I will fight, my son taught me how :)

Being Strong?

People often say that I am so strong.....I really am not. I wonder from moment to moment how life will go on. How do I find joy in my life. Will there be a day that I don't feel like this? I have so much to be grateful for. I had my son for 2 1/2 yrs. I knew his life would be short....but it is still not easy. I miss him more and more each day. It gets harder with each passing moment...not easier. I don't want sorrow or pity...I want a bandaid sent from Heaven...I want to not hurt so incredibly bad. My son brought us so much laughter, love & happiness...so what is it that I want? Would it have been easier if he had a hard life?? Of course not! So where are the answers...what am I trying to find? I look at this world so differently now. This isn't my home...just a rest stop. I want to feel like I use to. So abundantly Blessed. Selfish, I know. Grief is such a strange thing. I find myself missing things that just don't make a lot of sense: I haven't been to the grocery store since before Caleb went into the hospital. When I use to go to Publix after Steven got home, it would be my quiet time. I would go shop, call when on my way home, walk in, see Caleb sitting with daddy & just smile. It was my routine. I miss the hospital, the dr's & the nurses. I can't go toward Gainesville because I start having anxiety. I miss parking in handicap spaces...not because of conveniences...but it meant I had a really special baby on board. When I leave the house my anxiety level goes through the roof...I want to be at home...where I had been for 3 yrs. I don't know of any place more important to be than at home and caring for my son. I don't need fancy clothes, glamorous hair, or a night out on the town. But I guess I need to learn how to be a wife and mother again. Strange huh?? Eventhough, I know I feel like I'm the only one going through this, I know that I'm not..there have been those who walked this road before me, with me & will go through it after me. I pray for joy, laughter, love & life....not only for myself but for everyone around me who is also grieving. I miss my son...I miss his smile....there are just no answers...just time I guess, I pray.

Caleb's Life Story by Jacqui Janetzko

Thank you to the Ocala Star Banner for telling Caleb's story. Especially Jacqui Janetzko & Marian Rizzo, for telling about his journey. And that of his precious trisomy friends. It brought so much awareness about t18. Caleb is missed so much, because of your stories, we can continue to celebrate his beautiful life and show that our children are such a huge part of our families, friends & community. Much love and appreciation from our family.

Letter to my beautiful son..I read this at his Celebration

Dear Caleb,
I remember the day I was getting ready to head to the hospital to meet you for the first time & I was talking with God. I had prayed to have a couple of moments with you...to hold you. Then I got up the nerve to try & renegotiate with God, & asked Him for 2 hours. And if that was not to be His will, to please hold me and our family so tight to handle whatever may come. Never in my most wonderful dreams did I think I would have 2 1/2 years with you. I got to watch you grow into this amazing lil' boy. So full of life, never knowing your earthly body was broken...because your beautiful spirit shined brightly. Your smiles were infectious....no one was safe from them....they would instantly smile with you. I loved waking you up every morning with a "hello sunshine", laying you on your blanket, turning on your tree, then your cartoons...we had our routine. I loved our naps, I would lay my head right next to yours so I could feel your breath with mine...we were sharing one breath. I loved nibbling on those cute little toes...they were so perfect.... I loved taking care of you my son...I would've done it a lifetime...I am so honored that God chose us to be your parents...your big brothers will be looking for you everywhere...in the garden, in a rainbow, in a dream...so please watch over them. I wouldn't change one moment.... I would do it all over again. You have brought so many wonderful people into our lives. You've shown so many people how to love...how to live...."You've made God famous" I am so incredibly proud of you with all that you have done in the short life you have been here with us. I could go on and on, you have given us so many wonderful memories. I could sit and talk forever...I promise you that I will continue to tell your story to help others & just to make me smile. But there is one more thing I have to say...I want to thank you and God for giving me those last moments with you. When we knew it was close for you to be going home...as I layed next to you...I asked for one more nap with you...we wereso tired. All of a sudden as we layed there your sats went higher than they had been in days & as I held you in my arms I could feel you become warm again, you opened your eyes for the first time in so long...they looked beautiful and you rubbed your nose as you always did. We layed there for a while....until it was time for you to go from our arms into the arms of Jesus. I will never ever forget that moment & I am so incredibly grateful for that moment.I love you my beautiful son....