Friday, January 21, 2011

Most Days I am VERY Happy

but...days like today SUCK.  I know it is the 'google' depression.  Spending too much time on 'google' and then thinking about all my little girl will have to endure in her life.  It is NOT fair.  I hate thinking about everything and I hate the tears that have been flowing so steadily all day today.  This post is going to be long...I can feel it already.  I can't stop thinking and am typing as I think, so bear with me.  I don't usually have really long posts, but I just feel the need to write out my feelings today...good and bad.

I know there are a lot of people that believe that God does not give us more than we can handle, but I don't feel like that today.  I don't understand why God would give my daughter so many health problems.  I don't know why God would want so many heart angels.  I am having a un-God-ly day today.  I am not super religious and when days like this makes me question everything I have ever believed.

Here are just a few of the thoughts that have been running through my head (just to give you an idea of what days like this are like).  It is sort of like a story we had to write in school - who, what, when, where, and especially WHY:

Who would make a child go through all of this in her life?  Is it God...maybe.  Is it us because we didn't listen to the doctors before she was born and then after when they told us to take her home to die...probably.  Were we wrong?  I don't think so and I wouldn't change anything.  I know there are people out there that would not agree with our decision.  I have heard that we are selfish and only doing what is in our best interest...I think that is a crock, but I can understand the theory.  Who would knowingly want their child to have open heart surgery?  You know how I answer just don't know what might happen with any of your children in the future.  My perfectly healthy boys may develop some issue in the future (please more) and I don't think anyone would tell us not to fight for them with every fiber of our beings.

What can we do to fix Hope?  This is something that I think about all the time.  I am a fixer and so is Jerry.  It is so hard to know that we can't fix her...that we NEED a team of medical professionals to help fix her.  We actually realize that because she only has one ventricle she will never truly be fixed.  And...transplant brings it's own set of problems.  We would do that for her too.  If anything ever happened and she needed a transplant, we would list her in a second. 

Where is the best place for Hope to continue with treatment.  I have thought a lot about this because I want to make sure she receives the best care possible.  I love her doctors at the Cleveland Clinic Children's Hospital.  I am comfortable there and know they will do everything possible for Hope.  It is close to home (well close enough). the back of my mind I think about CHOP and I wonder if their single ventricle program is something Hope she be a part of.  I have had parents tell me that they don't understand why I don't take Hope to the 'best' hospital...why I want to stay local.  I feel comfortable and I know everyone will work extra hard for Hope.  The doctors are great and even though they are not the best known doctors, does not mean they don't perform a lot of surgeries or that they don't know what they are doing.  The week Hope was born, Dr. Mavroudis performed at least 3 other Norwoods that I know of...probably more that I didn't know about.  That is a lot.  All of them are doing great Glenn.  To me, that is 100% success.  I am staying where I am at...especially with that success rate!

When...this is the hardest question for me because it takes me to a place I don't ever want to go.  When will Hope die?  Will she outlive me?  I pray for that every single day.  No parent should ever have to bury their child.  When will she have her Fontan?  Will she be big enough?  I don't know the answers to those questions.  Best guess...during the summer of her 4th year is when I am thinking it will be done...maybe her 3rd 2013 or 2014.  When will her kidney's fail?  NEVER is what I pray for every single day!  Hope has proven to be a medical miracle and I pray that continues for a VERY VERY long time.  This is the one area I don't let myself go to very often.  I hate it and I hate thinking about it.  The very thought that we may have to bury Hope is unbearable.  We treasure every minute and appreciate life so much more because of all she has been through...but in the back of my mind sits this horrible thought.

Why Hope...I have lived my life...done everything I have ever dreamed of doing.  I have done more living in my 40 years than most people do in their entire lives.  I have seen the world and stayed in some of the nicest places you could imagine.  Why couldn't I be the one with all the health problems.  I would understand life so much better if it were me that had to go through open heart surgeries and probably a kidney transplant.  Adults should go through these things...not kids.  Kids are innocent and should remain innocent.  They should not be afraid of doctors and nurses.  They should not be afraid of the hospital.  They should not have to spend time in a hospital room.  They should not be poked or prodded or have any type of surgery.  They should be able to live and be happy and never have to understand any of this stuff.  My oldest son knows Hope has 1/2 a heart.  He knows it will be a long day when Hope goes to the doctor.  He plays extra special with her when she comes home.  He knows all of her home health nurses by name and loves them as much as Hope and I.  My boys should NEVER have to know any of this...they should NEVER have to be afraid.  I worry about them and what affect all of this will have on them.  I pray it will make them more compassionate and caring boys/men. 

OK...I am done.  I am emotionally spent and don't want to think about any of this anymore.  I know it will always be in the back of my mind...and it will stay there.  I would love to believe these thoughts will never come back, but I will try and make them stay where they the back of my mind.  I plan to get back to the positive life I have been living for 40 years.  I will cherish my life, my husband, my kids, and everything that goes with that every single day.  It is how I live and will continue forever.  I am grateful for the life I have led and will continue to lead.  I am blessed with so much and I will focus on that and stay away from the stuff that brings me down.



  2. I have had (still do at times) these same questions and emotions. Exactly. It's such an amazing/crazy bond that heart mom's share. Just know that you're not alone in your thoughts...hang in there and hold tight to HOPE. Her name so fitting to the belief we should all share. You're a wonderful mother and doing your very best to fight for her. Don't question that. Hang in there and heart hugs-

  3. I too have had those exact same thoughts... all of them. And they are scary and take you to places you don't want to think about. It is so hard to think about sometimes. You just try to enjoy each day and cherish it, and thank God when another day passes and you've made more memories together. That is what we can cling to.

    Thanks for your prayers and message on our blog! :)


  4. I have these days too, but instead I'm the CHDer and I ask all these questions. Sometimes I get so scared and fearful especially hearing so much sadness in the CHD world. I usually need to talk it out then do something to get my mind off it and continue living and being so very very grateful and thankful for everything I have including being pretty healthy for a Single Ventricle CHDer.
    I've asked my parents many times how they felt or still feel. I don't think the tell me everything still of what they felt or still feel. I know they did say not knowing other CHD parents and CHD kids did help, though they would have loved to have people that understood they didn't see all the kids passing away. All they had to was news (good or bad) that they received from the doctors about my prognosis. They said it wasn't easy to keep positive, but easier than if they had known the real reality of seeing so many pass away and back in the 80's is was alot higher than today. My mom remembers a little girl, perfectly healthy pass away from the flu, she said it put things into perspective that no one is promised tomorrow especially us, but no one CHD or no CHD.
    Take breaks, I do that. I also remind myself of all the CHDers older than me, LIVING! Older ones message me a lot and say they just live and most don't think about their CHD all the time, easy since most are part of the CHD community and that's probably why most don't become part of it. But I love spreading Hope and talking with parents. :D
    Think about these statistics (even though I usually don't live by them, b/c know one not even drs know everything): Over 50% of CHDers alive today are Adults! Over 80% of CHDers make it to adulthood (though the Adult Congenital Heart Association say 90%). Technology keeps moving and the odds even just for the Fontan has gone up ALOT!

    With LOTS of Hope, Love, Faith, and Hugs,
    Lauren (23yr old CHDer with Tricuspid Atresia, HRHS)


  5. I admire your honesty in this post...all those thoughts I have also had. Those lingering thoughts that are always there, somedays they are much more prevalent. Know that we are praying for you, your family and for Hope. We trust that God has a plan, and that suffering never goes without purpose. Hugs and blessings =)

  6. Oh Paula, the God thing. I know right where you are at with that. Those questions will never go away and in my case, have only gotten more intense since Gabriel died. There's enough to deal with in the everyday world without adding to it by thinking that I'm being punished by something that humans created to explain why things are the way they are. I have all the documentation that clearly shows why Gabriel died and no where on there did anybody write "because God needed another angel" or "because this was part of God's plan".

    You're already doing the best thing you can do: "I will cherish my life, my husband, my kids, and everything that goes with that every single day." Keep that up and know that you are not alone in your questioning and struggles. Thank you for sharing yours with us. ♥

  7. I understand completely. Like you and all of the other moms who commented before me, I've had those same exact feelings and questions.

    Praying for you, and clinging to HOPE! :)

  8. I am yet to have my HLHS baby boy and already have so many of the same thoughts. Mostly Why and When. It makes it hard to see some kids thrive and some struggle and always wonder which one will be mine. I wish you and Hope the best. I think it's good to vent a little and if this is where you want to do it, go ahead. It's your blog... Heart Hugs

  9. I am yet to have my HLHS baby boy and already have so many of the same thoughts. Mostly Why and When. It makes it hard to see some kids thrive and some struggle and always wonder which one will be mine. I wish you and Hope the best. I think it's good to vent a little and if this is where you want to do it, go ahead. It's your blog... Heart Hugs

  10. I just discovered your blog - first of all, thanks so much for your transparent, honest words. Although it may seem wrong and "un-Godly" to be angry, trust me - it is completely normal. I'm confident that God values our honesty and brokenness - after all, He already knows our deepest thoughts and fears. Dont stop being honest with Him - you are a brave momma!! What a fitting name for your precious heart baby - HOPE - keep putting your hope in Christ!

    Much love from a heart daddy,
    Mike Skiff

  11. I understand completely how you feel! I have these days often wondering why this happened to Kayden, and right now he hasn't had any surgeries so I know that any day I could go to wake him up and he may not be breathing...We shouldn't have to live like that or fear that our child may die. Just like when it's his time for surgery here soon I have no clue how I'll do it, I guess because I know he's strong enough to fight for his life like he's done for the past 3 years & now it's the toughest fight yet & he's still not giving up! I also understand the part about staying local with your hospital. Kayden's been seen at the University of Virginia which is 2 hours from us, I am comfortable there and I trust those doctors with his life, but they did send his information to Children's Hospital Boston for an opinion and since they think they can do his surgery without a transplant then that is where we are going. The only thing I worry is that one doctor says he's too high risk for the valve repair & one says they can fix it. So that scares me to death!!

    Hope is strong, she has proven that! She will fight until she can't anymore. She's a miracle just like all of our heart children <3 they are amazing and everyone should learn from them. They never give up & us parents never give up & we will not give up on them. You're a strong woman just always remember that! God tests us to see how strong we really are I believe. I have also questioned lately the 'God doesn't give us more than we can handle' it is true but I have days where I feel like I just can take it anymore!!

    Hold your head high mama and stay strong for your beautiful family <3

  12. {{{HUG}}} I think all of us heart mommas have had ALL of the above thoughts at least a few times along the way. This journey is not easy and some days it feels like we are carrying the weight of the world alone on our shoulders. We allow ourselves to be taken to those deep, dark and desperate places. Why not right? It is OUR child we are talking about and their life is one giant uncertainty. However we have to continue fighting to rid ourselves of that fear even if it means we fight every minute of every day for the rest of our life. Fight!

    Have faith dear friend. I know it is hard. You have an army of heart mommies right behind you to uplift you and keep pushing you forward if you are "stuck". We'll back you up!!

    Thinking of you and sending up many prayers for Hope!

  13. Paula, I feel the same way. I am sitting with my son in his hopsital room, he is on ECMO, and doctors just told us it is getting close to time to take him off life support. I am wondering the same things. So many questions, but the biggest one, is why him?

    It is hard, and I have good days and bad days. Today is definitley one of the harder days. I don't know what is going to happen, and I feel helpless, all I can do is pray hope and wish for the best.

    Parker also has kidney problems, he only has 1 kidney, his kidneys didnt separate before he was born. He is also missing a rib and a vertabrate. I pray that everything continues to go well for you and your family, Hope looks like one tough girl. Wish you all the best