Sunday, August 18, 2013

My baby is growing...

Dade recently turned 6, and with it has come a whole new world. He has decided that because he is 6, he is more able to do certain things. Example:

"Mom, now that im 6, I need to ride my bike without training wheels"

"Since im 6 I can eat vegetabes!"

Of course none of these things have actually happened yet...but I'm in no hurry.

Didnt I just have him? Didn't i just get shoved down the CHD tunnel? He starts first grade in a week, he has friends, he knows how to use my ipad better than I do. My boy is growing up. Fast.

I recently started a new job, which I love! I get to work in the afternoons and evenings from home, which is fabulous because no time is taken away from my kids. Due to HIPPA retulations, I will have to pass on the details, but I will just say that the job is A.M.A.Z.I.N.G!

I decided to take a break from facebook in July, and I really had a hard time not stalking profiles...but after a few days, I have found I relish the drama-free life. I have also realized how much of my day was wasted by the endless scrolling of my! If youve looked for me on Facebook and I'm not there. I'm here. Alive and well. Busy enjoying the last of the lazy days with my babies before the hustle and bustle of the school year starts!

Tuesday, April 23, 2013

The results

During dades echo I watched his heart. Telling myself "his aorta looks great" and "wow! What beautiful pulmonary arteries!" But I couldn't look at that pulmonary valve and not worry. It appeared, to this totally unqualified mother, that the leaflet on the right was sticking. It appeared to be opening only slightly. Of course I was panicking inside.

The limited echo took 45 minutes and we were taken to the room for an EKG. While we waited for Dr. Gray I focused on the scripture Luke 22:42.

42 Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done.

When Dr. Gray came in, he assured us immediately that everything was fine. In fact, it was better than fine. As far as defects go, his is the best it could be. Practically good as new. We have a follow up echo in 3 years and if all is well with that, he doesn't go back until he starts high school! How amazing is that????

As we celebrated this good news, and pondered our blessings, and spread the good news I was bombarded with "thank heaven for answered prayers!" "Heavenly Father healed him" etc. now, don't get me wrong...I love hearing those things. But. It got me to thinking...if something doesn't turn out how we want it to; if Dades echo had show his pulmonary valve was trashed and it needed to be replaced...does that mean Heavenly Father ignored me?

Living in this CHD world I have seen amazing blessings and miracles. I've also witnessed tragedy. Parents who prayed, pleaded, begged on knees to have their child healed, only to lose them all too soon. To me, it seems like people believe that if that happens Heavenly Father wasnt listening, or chose to place that burden. I know they mean well...but it has been bothering me more and more.

I've found myself more aware of the things that come from my mouth. I have found myself praying for patience and understanding. For the ability to truly trust in The Lord. To trust His will. If We had been told Dade was sick and needed intervention, I wouldn't have turned my back, feeling angry and betrayed (as some of my dear friends have, because I really think they believe that because their child died, Heavenly Father wasnt interested in blessing the with the miracle they wanted) i would have said "ok this isnt cool, but show me what you would have me learn. Help me to accept this. Help me to see the good from this. Help me to know how to handle this trial"

I certainly didnt have this point of view years ago (as past readers surely remember!) but I think that the trials I've endured with my children have helped me grow spiritually. At the time it was the worst thing in the world. Heart baby...preemie, nicu, hernia, another heart baby, brain cysts, seizures, and breath holding spells. My children have definitely not been easy...but in all of those trials, in all of that pain, I grew from a bitter, angry "you didnt give me a perfect baby so you hate me" person to someone who is capable of more love, compassion, concern, devotion, and acceptance than I ever thought I could be. I know had it not been for these trials I wouldn't have found this path...or it would have taken me many years to find it.

I'm so not perfect. I'm the biggest sinner out there! So please don't mistake this post for anything other than a personal revelation. I'm not high and mighty. Just low and humble and incredibly grateful for the way Heavenly Father has blessed me --even though it hasn't always been "ideal".

Thursday, April 11, 2013

The time is here

I awoke to deep, looming clouds and freezing rain pounding on my window. The weather was reflecting my mood. The time is here.

I have tried for weeks to put it out of my mind. To pretend its not happening. No matter what I do today, I can't push this aside anymore. The time is here.

It has been so long, I've forgotten the strain on my emotions. I had forgotten what it feels to worry endlessly about this child. When given his clean bill of health, I set these emotions aside and moved on. Now it's like I'm being smacked in the face with this old, raw fear. The time is here.

I look at this perfect child, Who is so full of life and love. Who has a hilarious personality. Who has the most tender heart and fiesty spirit. I can't believe we are back here again. It seems so unfair. The time is here.

I am painfully aware that our situation is so minor compared to some friends around us. But for us...its not minor. For us, this IS a big deal. When the world lost sweet Kylie, I knew how blessed we truly were, even in the midst of our own trials. Her passing made me realize that life is so fragile. From the minor to the severe, our children don't deserve this life. They don't deserve to have a cardiologist who knows them so well. They don't deserve to have to be poked, prodded, x rayed, covered in stickers that take off a layer of skin when they come off. It's not fair. How I wish I could take his place. The time is here.

My sweetheart, Dade is having an echo tomorrow morning at primary children's medical center.

The last couple of months his hands have been dusky. He won't eat; losing close to 10 pounds in just a couple of months. He doesn't sleep much. He has energy, but its short lived. 2 weeks ago we were standing in line, waiting to be seated at a restaurant for dinner. I looked down to Dade, who was staring past me, short of breath. I asked him what was wrong and he looked to me and said "my heart feels funny" his hands were blue, he was covered in a cold sweat. I placed my hand over his precious heart and it was beating so hard. My heart shattered the moment my palm rested on his.

Our appointment was scheduled in February, so this waiting has been difficult. I have immersed myself in prayer. I have poured my soul to Heavenly Father. Not just to heal my child, but to bless me with the strength I desperately need. I know He will carry out His will. He may heal Dade forever, He may leave us with this trial forever. I did something I haven't ever really known how to do before. I prayed for understanding His will.

I have learned that praying for healing, and not getting it in the way we want leads to feelings of anger and abandonment. It leads to unholy thoughts and feelings. But understanding that there is a purpose to this chaos is a far greater blessing than just getting what I want.

The other night, Justin and I were reading our scriptures and as we read of Alma in the Book of Mormon, a scripture touched my heart and filled my eyes with tears. Not because I felt that everything would be perfect at this appointment, but that regardless of what we find out tomorrow, Heavenly Father will be there with us.

" 3 And now, O my son Helaman, behold, thou art in thy youth, and therefore, I beseech of thee that thou wilt hear my words and learn of me; for I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day." (Book of Mormon, Alma, Chapter 36)