Monday, August 31, 2009
1 : a high degree of gratification : joy; also : extreme satisfaction
2 : something that gives great pleasure
I love the Lord, don't get me wrong, but satisfied with him..**gulp** umm..no I can't say I am.. what is keeping me from this? my JAW is taking the bite..she explained it like this..
J~ jealousy..check. I am jealous everytime I look around and see these losers with babies..not just one, several unkept, unhappy skeezy parent with a beautiful child..its not fair..and yes I am totally and completely jealous..
A~ anger.. this doesn't begin to describe it.. so beyond anger.. you know when you are so mad you just can't do anything but cry.. thats me..not mad at God, mad at the above mentioned skank-wads, anger at the situation in general..so angry there is nothing to do for these precious babies.. HOW is there not a cure or treatment? How is there no government funding??! 1 in 10 children will somehow be effected by mito in thier lifetime!! 1 out of 10 people! becoming more common than childhood cancers.. so yes..anger.. that would be me.
W~ worry..ugh..if you know me, I have always been a worry-wart.. my 9 year old has been in a bubble since the day he was born..now though, zoom in like a 100%.. I worry when I take him to school, what if he catches something..what if he has an asthma attack? what if something awful happens to him.. I can't handle it.. I worry about future child/ren.. what if it/they are sick too? what if I can't get pregnant? it took 4 years with Ella.. I worry about money, my hubby, my parents and grandparents.. name it.. I worry about it..
All of the things mentioned above are things I am now working on.. I have so many desires, but my main one right now is peace of heart/mind/soul.. as well as another baby.. not now, but eventually, when we are ready..
Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
I had such a great time and have such great friends! All are invited to attend Deeper still with us on Dec 4th &5th, 2009 in OKC.. This is going to be Beth Moore speaking as well as 2 other great inspirational speakers. Let me know if you are interested in coming..Thanks Amanda for sending us..we missed you there!
Oh I have no pics from the event to share..I fail, didn't even think about it.. loser..
Wednesday, August 26, 2009
this is one of my all time favorite pics of the 2 of them.. again..thank you mr. motorola for providing me a camera on my cell phone.. BRILLIANT idea ;)
and thank you Cayden for capturing smiles and her cuteness when I may have missed them.. love you so much!!
Monday, August 24, 2009
My dear ol' dad turns 55 today! I am sure there are times when he felt defeated as a dad (with my brothers of course, not me!) but he was always there for us and still is! I am blessed to have great parents who stuck it out through the rough times.. married 31 years! how awesome is that!? Anyway.. her has been a great influence on me and has always been one of my best friends! He taught me to stay positive and to believe in myself no matter what He taught me to NOT be defeated, to not be the constant victim.. and for this, I am forever in his debt.. through all of these trials with Ella, I am not defeated, wounded certainly, but never defeated.. When we had to tell our parents Ella's diagnosis, I dreaded telling everyone, but I did not know how I was going to break it to HIM..I knew he would be okay, but I know how empathetic he is for us, so I had to put on my brave face, because if I was broken, there was no chance it would go well.. It went fine and now, he too, just looks forward to the day when he can hold her again.. she loved him so much, it was very sweet to see them together...
One funny dad story and I will end.. When I was in 1st grade, my mom was working nights some and my dad would keep me and Tom during the night and cook dinner.. One night he was cooking, or shall I say burning dinner and I was trying to tell him how mom does it and he said "I don't know what I am suppose to do, what am I? Freaking Mr Mom?" and I just looked and him and said "well yeah, for now.. I guess" and he just started laughing..and I can guess we probably ordered in pizza or something.. now anytime he does anything around the house, I ask him what he is Mr Mom? haha.. he has a loud bark sometimes, all I can do is laugh when he gripes though..Cayden does too.. one day we were riding with my dad and he started griping at the people in front of him to learn to drive and Cayden looked at me and said "they can't hear him mom" I nodded and laughed... nope.they sure cant...but it wouldn't be him if he didn't do it :) that was two stories I guess.. anyway..happy birthday dad! we love you!
Friday, August 21, 2009
Exactly a year ago today at 7:34am, I was born again when I saw your sweet face...3 months ago, a part of me died when you left.. we had so much joy at this time last year, and now we have only grief and sadness.. I would give anything to have you here with us, to hear your sweet voice again, see your sparkling eyes again..to touch the softest skin I have ever felt..its not right, and it is not fair.. I know the angels are still rejoicing for you Birthday girl, but your mommy is still crying.. and am not certain that it will ever stop.. I miss you much, think of you always and I love you forever..~mommy
Tuesday, August 18, 2009
The 1st few months flew by, she wasn't a great sleeper, never had great neck control.. but she ate okay and seemed to be fine.. I just had this feeling that something was not right. Our friends lost a baby to SIDS in November and I cried and cried for them. She was only a month older than Ella..My parents immediately went out and bought and angel care monitor... this was one less thing to worry about.. she got over the colic and was perfect and perfectly healthy..
until 1 day.. December 30,2008 we took her into a small local hospital.. She had been up all night crying and not tolerating her feeds.. She had been seen a few days later and diagnosed with an ear infection..I figured she had a stomach bug or intolerance to the antibiotics.. and needed some IV hydration.. which I did not love, but knew sometimes it happens, especially in infants..the just get dehydrated so fast. They had her in the hospital ER room for about 3 hours and did a belly xray and thought something was wrong that had a simple fix, but needed to go to the childrens hospital since they would have the right equipment needed to correct it.. We got to the ER via ambulance and immediately there was a team of nurses and doctors on her.. I heard the doctor say "that not it, there is something else wrong" I sat in the corner and wept.. he told us they were sending her upstairs to be admitted and that they would take over the care and find out what is wrong.. and so by this time our families are there with us and they told us where to go and they were off with her..literally running her in the bed...so we get upstairs and it is the pediatric ICU..we did not know it was the ICU.. they wouldn't let us back for a minute and finally let me and Jay in.. the doctor came in and said they need to do a catscan because her soft spot was so tight and were going to do a spinal tap, they suspected meningitis.. We went back out to the waiting room and I went to the bathroom and cried and cried.. I KNOW meningitis can be cured if it is bacterial and know viral is just something she gets over.. something in my stomach, that I can not explain told me it was more.. Jay came in and tried to comfort me and I just said "what if it can't be fixed, what if its more??" we just prayed and wept together.. the spinal tap came back "milky" she stayed in the ICU for several days and was transferred to the 3rd floor. They treated her for meningitis and on day 10 of the antibiotics, her liver function was high.. they said it could possible be from the antibiotics and other meds.. after a week of them going up.. what could possibly cause this?
Jay and I told the doctors about Jays cousin Amy losing her 2 babies to a genetic disease, mitochondrial DNA depletion.. we got all of the information and they called in the geneticist.. He said it is so unlikely that Amy and Jay would both marry carriers of this disease, but he wasn't sure.. liver and muscle biopsies were done and we finally got to come home and wait on Labs and results.. she seemed to be getting better, so I convinced myself she was okay.. Feb 2, 2009 Dr Kayser called and told me it was mito for certain.. I held her and cried and cried.. I knew the prognosis and I was NOT going to let my baby go!! Jay got home from work and I told him.. we looked up everything we could find and more on Mitochondrial DNA depletion and Alpers.. none of them good.. we prayed and prayed and she was getting better!! even her labs were in the normal range again.. She was not taking in as much as she needed to gain appropriate weight, so in March we had a feeding tube placed, everything went fine and we came home as scheduled.. I woke up in the middle of the night and she was twitching on one side.. so we took her into the childrens ER once again and she was indeed having seizures.. everything went downhill after that.. She was in and out of the hospital and we had hospice involved.. the meds needed to control the seizures sedated her and slowed her breathing, but without them, the seizures were intolerable.. we prayed for God to heal her.. I selfishly prayed for God to take me first, I knew I could not live through the loss that was about to come..
Sunday, May 17th, her breathing was different, she was cooing and opening her eyes.. I prayed she was getting better, but I knew she was rallying.. I called in Sheila our hospice nurse and she sat with us until after 1am.. I needed to tell Cayden before I took her to the hospital that she was not coming home this time.. Monday we woke up and asked C if he wanted to go with us and he said no.. Jay stayed home and my best friend Erin took me and her in.. she was admitted to the 3rd floor again and once we were all settled, jay and Cayden came up, as well as all of our family members and best friends..she cooed and was making such sweet sounds still.. angels tickling her feet maybe? She was stable in breathing and heart rate.. Everyone finally left around midnight, Jay took Cayden home to sleep and was going to come in early Tuesday morning.. All night she was stable, Erin stayed the night with me there, they would come and check on her hourly and we would just look at each other and randomly talk.. Jay called and I asked him to bring the laptop with him so I could update everyone on how she was doing.. I thought we had more time..about 8:40am her breathing slowed and we called the nurse in.. in a matter of minutes her pulse dropped to somewhere in the 20's! I knew Jay would not make it in time... I prayed for her to hang on, but she slipped away.. I remember each person coming in and having to tell them she was gone.. after a few minutes of hysterics, I was numb and everything became 1 bad dream.. Cayden took it pretty well.. I am so thankful for the support we had that day.. We sat and held her for hours..crying, laughing and loving on her.. Jay handed her to the pastor of the funeral home who came to pick her up, and it was the hardest thing he has ever done, and the worst thing I've ever witnessed..its as though I literally saw his heart shatter.. and I couldn't move.. I just stood there.. then it was time to go and I froze..was I really leaving the hospital without my baby??
The next days were a blur.. The support from our friends, family and church was awesome.. Her service was beautiful and there were so many people there that cared about her and us.. in her short time on earth, she made a big difference.. to a lot of people..
We approach her 1st birthday and I think about all of the things I would be doing and arranging. I imagine picking a little onsie and tu-tu with a pink tiara out.. ordering the cutest cake ever.. laughing when she would dig in.. but that is a dream..she is not here.. the lord promises that he will get us through it.. and we are getting through..it is not easy, definately not fun..we all miss her so much.. Jay, Cayden and I cry for her frequently.. I asked Cayden a while back if he misses and thinks about her sometimes, and his reply was "if sometimes is everyday, then yes...sometimes I miss her" We are all angry and upset, but we were blessed to even know her on this earth.. she was such a blessing and we have so many wonderful memories.. We trust our Lord and his plan and cling to his words daily..
The Lord gave, and the Lord has taken away; blessed be the name of the Lord..
Woe is me for my hurt! my wound is grievous; but I said, Truly this is a grief, and I must bear it.
Sweet Ella Bella~
we love you so much baby girl and can't believe you are gone..it makes me so sad to wake up each day with out you... I think about you all of the time.. Sunday as we were leaving for church I was thinking about you and looked down and saw a butterfly in your flowerbed that we made for you.. I told daddy to go back in and get the camera so we could take some pics.. it was beautiful..you were beautiful... God reminds us of how lucky we were to have you every time he reveals beauty on this earth..I miss you so much I can't stand it.. I wish you were here and healthy.. I can't wait to see you face to face again...until then..we'll think of you always.. miss you forever..
Monday, August 17, 2009
However we are doing a balloon release at Graceland cemetery at 6:30 pm.. when you drive in you should see us.. All are invited to attend this.. and afterwards we will cook out at my mother in law nancy's house.. let me know if you wish to attend!
Thanks to those that have donated for this.. I am not sure of the cost of everything yet, but should still have some to send in Ella's name to the UMDF! and of course if anyone would like to donate in Ella's name personally you are more than welcome to! I am still working on fundraisers to raise more money to donate and kick this disease in the tail end!!
Sunday, August 16, 2009
Also Jace who still needs lots of extra prayers! they are going to Cleveland in 2 weeks to see some specialist and hopefully get some answers (LONG overdue!!) his moms name is Trish and they only live a few minutes away from me.. she is so sweet and kind! stop by his page and show them some love too!
sidenote~We are doing okay so far this week, Ella's birthday is friday.. I am excited to take bears and balloons to the childrens hospital around 2 or so and meeting at the cemetery around 6:30 for the balloon release and then to Nancy's to eat and remember the most beautiful baby ever.. :) please let me know if you would like to help or attend either or all!! its hard to believe all of this was a year ago already..I've said it before,but its flown by and seemed like forever all at once.. We are already having ups and downs this week.. please keep our families in your prayers too..
Tuesday, August 11, 2009
This week, we are sharing about the effect our loss(es) had on our children. If you did not have children at the time of your loss, we are also sharing about subsequent pregnancies (after the loss). If you have not had a pregnancy following the loss, yet, you may share your feelings about facing your next pregnancy.
Obviously for us this is all very fresh.. We told Cayden in January that she was sick and we did not know how it was all going to turn out.. He cried and said that he was just going to pray for a miracle.. when we told him that she did have mito and that she was going to pass without God's intervention..again he cried and said he was going to pray more and ask his friends to pray too.. and he did.. his teacher said she was praying for her and so did several of his little friends... very sweet.. I would watch him with her and she would hold her hand, sing to her and now and then we would see a few tears.. he never gave up on her..
The day she passed he came in, he asked everyone leave except me and Jay.. he grabbed her hand and squeezed a little.. I told him that did not hurt, but it could still bruise her..He kissed her and played with her hair.. He did not cry much the following days..he too would be fine and it would just sneak up on him and he would lose it.. he was so strong, he did not want to go to the funeral and we told him he really needed to.. he could not watch the video and kept asking me if it was almost over.. he cried when he saw others cry.. but he has faith like a child, (because he is a child) One day we were talking about her and I started to cry.. he said he misses her, but is glad she is better now.. and that I should be too.. he knows he will see her again.. This did get him thinking alot about salvation..while we were in Target, he asked my best friend if she is saved, he has asked several people at random times..so I know he thinks about her alot... but he doesn't always seem sad.. to have that faith like him, and for it to be enough to know we will be reunited would be awesome.. but I still have some anger and pity and selfish moments, when its just not enough..
We did go and talk to Dr K about our options on the safest way to have another baby..Cayden asked what the appointment was for, so we told him and asked what he thought about that.. He said he wants another baby, but he can't handle if its sick.. he said he just doesn't want that to happen again.. He is very loving and sweet and always holds my hand or hugs me when he sees that I am upset.. we talked yesterday about the rain and how it sometimes makes you sad.. he said he misses her more when its rainy and doesn't know why.. I told him I was the same way too and I'm not sure why either.. anyway.. he is strong and strong in faith.. I thought about taking him to talk to someone, but he seems okay for now..
Monday, August 10, 2009
Ella's Birthday 8/21/09 ... C, mawmaw and Ella all wrapped up..
I had to leave you dear ones,
But please don't be so sad.
I'm healthy and happy in Heaven,
Can't you just be a little glad?
There's family here and boy do they love me,
I want you to know that Jesus is holding my hand,
although I love and miss you
I know one day we'll be together again
No pain, no tears, no sorrow
laughter and joy is all that I see
mommy and daddy, I still love you
and I know how much you love me
The love will stay and comfort you,
though for a time, we'll be apart
But I know until I see you again
I'll hold a special place in your heart..
Thursday, August 6, 2009
As each day approaches I think about what I "should" be doing..such as making preparations for a big 1 year birthday party..it breaks my heart every day I wake up with out her and I miss her so much.. I know this year of firsts will be the hardest (or so I hear).. I would have never imagined that she wouldn't be here to turn 1 on that morning we met her for the first time.. I feel moody and extra sensitive, and each day closer to Aug 21,2009 it seems to intensify.. its not fair and not right.. but I must face what I am given.. and I choose to help others in their time of need.. I so wish I could do more.. maybe one day we can be independently wealthy and give more to research a cure for this awful disease and donate to the childrens hospital, that kept her alive and pretty well for 8months and 29 days.. I have no doubt with out all of the doctors and nurses we would have lost her in January if not for them..
Tuesday, August 4, 2009
My wonderful husband turns 29 today!! almost to the dreaded 30 ;) I can imagine that he will never forget the age 28..had a beautiful baby girl and felt such joy and then fought a brave battle with her and eventually lost her.. he and I will never forget being 28..being forced to accept things we should never have to face, and having a very harsh and cold reality.. and the whole time, always putting his family first.. working so hard only to come home and not relax, but take care of his emotionally distraught wife.. taking care of his sick daughter, making time for C, and not a complaint the whole time.. This year has brought us closer as a family.. it has put things in focus.. I am lucky to have such a wonderful husband..He picks me up when I am down and calms me down in my crazed moments... We have had many difficulties through the past years, but I am so thankful they worked out.. I could not have imagined going through any of this with out him, or with anyone else but him.. he has been my and Caydens rock.. 28 has been the best and the worst year all together... I love you babe and am so thankful for you and your patience and love... and most importantly your love for God.. you have shown us what faith truly is.. we are so grateful..
I loved you when we were young....
and I'll love you when we are old.. :)
Saturday, August 1, 2009
all of these pics, I am pretty sure I could and should have been doing something else, but I am glad I wasn't..I could post hundreds more, but these are just a few.. of wasting time...
I will never regret letting my house go for months and months..just to hold her hand.. I knew each day was another blessed day with her.. what we fail to think about, is that all of our days are numbered, some have more and some have less..but for me..its about today...since I don't have to worry about my eternity( thank you Jesus) all I have is today.. I am not going to waste it....
~ Benjamin Franklin