Wednesday, September 22, 2010

Where we are...

Two weeks ago tonight I was trying to wrap my brain around the 12 hours I had just lived through. Being told EK has Type 1 diabetes, rushing home to pack for the hospital, pulling my kids out of school to tell them and then have to leave them, the nightmare traffic jam in Hillsboro, the cries of Ella Kate because she did not understand what was going on, the precious sweet ER angel nurses who got the "noodle' in her arm with very few tears and trauma, my Aunt and Uncle meeting us at the ER in Fort Worth with at least 5 bags of presents for EK, that first shot of insulin....

Wow! It seems so long ago, but then again, this still all feels so new. I am past waking up every morning hoping it was all a bad dream. Now I wake up and wonder what EK's blood sugar is.  It is my first and last thought every day. I hope as we get further into this that that will fade some, but I am doubtful.

Ella Kate is past running, screaming and fighting every prick and stick. She still doesn't want to "go" as much as she used to. She just feels safer at home. But with coaxing and a little bribery she did go to Mothers Day Out on Tuesday and had a great day. I stayed at the school with her and monitored her  pretty closely.  As long as I go with her, I think she is feeling a little more secure at school at least.

Ella Kate has gotten in a very bad habit of grumping. Today I had to call her on it and insist that she not talk unless she could speak with a pleasant voice and say things in a happy way. It wasn't pretty for a while, but I think she gets it. It's not that I blame her for being grumpy. Heaven knows she has felt awful and deserved a few grumps! But she may always feel a little bad and it won't serve her wellfor her to be grumpy, rude, or ungrateful every time she feels bad. It's a hard lesson to learn at any age but, 4 is where she is, so we might as well tackle that giant before it gets bigger. Rob and I don't want  diabetes take anymore away from Ella Kate than it has, so becoming negative and grumpier just isn't an option.

Rob is trying to get take care of everything else because he knows I have my hands, heart and mind full with being Ella Kate's primary caregiver right now. He is getting past the worry over the enormous hospital and medical bills... We are praying insurance kicks in with no hassles and a raise is somewhere soon in our future. Rob still hopes to finish his last two MBA classes this fall and graduate in December, but he knows that might not be possible. I won't talk for Rob much more that that, but he too is adjusting.

Rob and I are trying to hang on tight to the blessing we have and be positive. We still tear up from time to time. The weight of this being her life and our life, with no breaks, no vacations, no end in sight is settling on our shoulders and we are learning to stand it.  There really is no alternative but to make the best of it.

Ella Kate has had her little realization moments too. She asked me if she still has to take shots when she is Kolby's age.  I said probably so, unless we find a cure. She quietly said that that was a very, very long time and wanted me to rock her. She also has had fits where she asked why we let this happen? "Why didn't you take care of me so I wouldn't break inside and have to get shots all the time?" That was hard to hear at first but I know it's only natural.  She needs to blame someone and we are the natural target. But we tell her it wasn't her fault or our fault, it just happened. Not sure she buys it. She has even said she isn't sure she trusts us anymore. I hate it, but I can see that. She has been feeling bad off and on for months now and we didn't make it better. Bless her little baby girl heart! I would gladly take this for her. Sometimes I wonder if my heart can take any more breaking for my baby girl.  I try not to wallow in the heartache or to let her wallow in it either.  At this point the "what ifs" and "if onlys" won't change anything or do anything to help anyone.

So now it's "buck up and accept it" time. Diabetes is a part of our lives from now on. We have to respect it and adjust to it, but we can't let it take over. I keep telling myself that there are much worse things than diabetes and to be grateful for all the advancements they have made in it's treatment. We also have to believe there will  be a cure someday, or at least a treatment that is almost a cure. We also have to remind ourselves how lucky we are to have the support, wisdom and example of good friends who have dealt with this for a long time.  We have extended family willing to go through it all with us. We are not alone. That is priceless.

As a Mom, I take great comfort in knowing that in a year or so Ella Kate will not remember life any other way. Pricks, sticks, and counting carbs will be all she knows. At first that made me really sad, but now I realize how much easier this will be on her mentally in the long run. She won't have as many habits to break or hard eating adjustments to make.  She won't mourn a lost lifestyle because she won't remember life any other way. Of course she will have to grow and develope with this disease. in that respect the later the better. At least she had four years.  Some kids are much younger. The  hardest part of this for me now and looking into the future is knowing that even if we do everything just the way we should, EK's blood sugar levels will still spike and dip. Right now the nurses tell us that we are doing great and so is she for being just 2 weeks into this. But it doesn't change the fact that I know when her blood sugars go all "roller coaster" on us, Ella Kate feels terrible. I have been around enough kids with diabetes to know that those spikes and dips are an unavoidable part of this disease, no matter how well we take care of her. That is really hard. Like every other Mom, I just want my little girl to grow up healthy, strong and feeling good. I don't want her to hurt or feel lousy. This makes my pleas to God for a cure even louder.

All in all I think we are doing OK.  Rob, Ella Kate and I are still physically, spiritually, emotionally and mentally worn to a frazzle at the end of each day. As for Kolby and Rhett... It has not been easy, but they are really trying and doing a good job of talking this out and going through this with us.
Rob and I have not had to wake up either kid for school since all this started. They are both up and dressed every morning all on their own without us even asking. They get their own breakfast and make their own lunches.  That may seem small, but to me, it's huge! I know they are both really trying to make life easier..well to the extent that a 9 and 12 yer old can.

Rhett is concerned, and truth be told, a bit agitated with all of this. He hasn't let himself say that out loud, but you can tell. He loves his little sister so much and he knows what a toll this has taken on us so he tries to be a good little trooper and just do his best. But he gets frustrated with how much Ella Kate cries. He has hugged us a lot more and talks more to me about my day and his day. He is worried about his parents and his sister.  Rhett also prays for a cure for his sister every night, sometimes to the point of tears and begging. It breaks my heart and makes me so proud of him all at the same time. Rhett will be a better person for this. As terrible as this is, I believe we all will be better.

Kolby is also trying to just carry on and not cause us any grief. She is so easily distracted and so almost-teenager-emotional that it is hard for her. She swings between feeling awful for Ella Kate to resenting this thing that has taken her family by storm. She gets so angry at us, then gets angry with herself for being angry. She wants to help but then she just wants to get away from it. It is really hard on her to see her baby sister have to deal with this. In ways I think she has taken it harder than anyone.  Kolby understands diabetes in a way I don't because she watches three friends deal with it everyday and she has watched these friends deal with it for as long as she can remember. She gets that it isn't going to go away and that there are no breaks or vacations from diabetes. She also knows her friends are happy healthy well adjusted kids who do well in school and are well liked. But these first two weeks have been really rough... All this and just trying to survive 7th grade!  It's a lot for her, but in time I think she will work it out and emerge stronger and braver.

More than ever, I wish I could make several clones of myself. One for each child. One for the house and one just to run errands and make phone calls. I have resigned most of my outside commitments for now but still feel that guilty tug when I can't be there for something for Rhett or Kolby. We won't even talk about the shape of this house.  When you see us on hoarders in a few years, know it all started in the Fall of 2010. And sleep? When do parents of diabetic children sleep? Every time I lay down my mind starts going over all EK numbers for the day, wondering why she went high or low, wondering what I need to do about this, how many carbs are in that, how to handle this person/ Holiday/dessert/ favorite food etc. My mind won't shut down. And then we need to check her at 12 AM and 3 AM.  Most nights I don't go to sleep until after i check her at 3Am. I am exhausted. But taking something to sleep might make me miss a blood sugar check and that is not an option at this stage in the game. So I would like a clone to just sleep for me. :)

This is all I can type for now. This post is more for me to look back on than anything else. I am hoping and praying that a year from now I will be able to read this and see how far we have come. As hard as this is, I know in my heart that we will be ok and we can do this because we love Ella Kate, because we have hope that there will be a cure, because our baby girl needs us to and quite simply, because we have no other choice. I pray constantly that God will give Rob and I the strength, stamina and means to do what we need to do for Ella Kate, and for a cure. Always for a cure.

Saturday, September 18, 2010

First Day of Preschool

September 7th 2010 Ella Kate started preschool at our church. She loves her school, teachers and friends.
Sporting her Gymboree Girls Rock outfit, Hello Kitty back pack, and Sketcher light up shoes, EK said she looked like a Rock Star!
Ella Kate is excited about my friend Ms. Susan being her teacher and meeting her new teacher Ms Brittany.
About 24 hours after these pictures were taken, Ella Kate was diagnosed with Type 1 Diabetes. We haven't made it back to school for more than an hour or two since. Hoping we make it tomorrow. But this time Mommy will be going with her. Too many new things to get used to with snack and lunch. Hoping I will feel like I can leave her some day... but that day seems very far away right now. Pray for us both. :)

Friday, September 10, 2010

Please Pray

Tomorrow Ella Kate will have a biopsy in the morning to determine whether she has celiac disease in addition to diabetes. I am praying that it will be negative and covet your prayers as well. Thank you.

UPDATE: Ella Kate did great for the procedure Saturday morning and we were dismissed late that afternoon. The Dr. Said he did not SEE any signs of Celiac disease in the small intestine or stomach. Thank you Father God for that!!!! The biopsies he took will tell the final story. It will take a week or more to get those results. I am prayerfully hopeful that the results of the biopsy will also be negative. Thank you for praying with us and for us!

Thursday, September 09, 2010

Are you sitting down?


Ella Kate has diabetes. For some reason I can type that easier than I can say it. It's been less than 24 hours since Dr. Dewbre gave the orders for Ella Kate's blood to be drawn and blood sugars to be checked. That is the moment I somehow knew for sure that my nagging suspicion was going to be true. Before the meter said 428, I knew baby girl really had developed this disease for which there  is no cure... yet. My head spins thinking of all that transpired after that to get us to where we are now, sitting in a hospital room in Cooks Children's hospital in Fort Worth, at 4:30AM.  Ella Kate is what they call "stable" which I guess means she was not really showing any dramatic symptoms when we found out. For that I am very thankful. It could have been much worse. I don't know why that makes me feel better, but knowing it could be worse does seem to help calm the fears.

I once heard someone on Oprah say that intuition is the voice of God, whispering. As much as I hated and fought that little nagging voice that told me we had to get this yeast infection checked out, that there were too many things just not right with Ella Kate, that all those things were adding up to that one thing I really didn't want it to be, I'm grateful for that voice because it made finding out safer for Ella Kate and easier on us all.

People keep asking why I thought something was wrong. I will try to explain, but it was really just a nagging feeling something was really not right. Ella Kate had a yeast infection. She recently wet her bed several times for no apparent reason. She was thirsty more often than not and she was clingy, almost terrified to leave me at times, which just isn't her. That "just not herself" is what took us to the doctor yesterday. Well, that and that nagging I was trying to silence. But now, as much as I hated what it was saying, I'm very grateful for that voice.

Surprisingly, of all the emotions that have been fighting for my head and heart,  gratitude is in the lead.  I won't lie.  Fear, pity, and anger are all vying for a close second. But for now gratitude is the clear winner. Rob and I are both so grateful for the many ways God has lessened this blow. First the prayers and support of our friends and loved ones is a blanket surrounding and shielding us. The peace I felt yesterday was just other-worldly.  I know it is the result of prayer. We are equally grateful for those we know and love who have walked this road before us. Holly, Anna Kate, Morgan, Hannah and several others have all lived with this for so long. They are examples that life can and will go on and that Ella Kate will be OK, that we will all be OK eventually.

I remember so clearly how I felt watching Martha Kate and Keith start this journey when AK was less than a year old just across town at Children's in Dallas 11 years ago.  I wouldn't wish this on anyone, but I am so grateful for their example in dealing with it. Keith told me that this would be on Rob and I, that it is up to us to carry this burden for Ella Kate and make her life as happy and normal as it can be. He is so right! And Rob and I are up for that. I needed to hear that.  We will do whatever it takes to make life for Ella Kate, Kolby and Rhett as normal and active as it was before yesterday. Ella Kate doesn't need to know how serious her condition is, it will be enough to deal with all the sticks. And heaven help us their are so many needles. Poor baby girl has been stuck more times in the last 18 hours, than in her first four years of life!

But it's a small price to pay to keep Ella Kate alive and functioning, and even thriving. Yesterday Dr. Duwbre said that there is no cure for diabetes but thank God there is treatment. I'm holding on to that. I'm trying to remind myself that there are many children in this hospital right now who have conditions for which there is no cure or treatment. So again I am so grateful that there is treatment and I am praying every minute that there will soon be a cure.

But for now, I ask that you pray for Ella Kate to handle this as well as possible without loosing her spunk and zest for life. She has been one brave little princess so far! Pray that Rob and I will have the stamina, strength and means to do everything we need to do for Ella Kate. We have so much to learn before we go home... Pray that it all clicks the first time.  Please pray for Kolby and Rhett... I am so torn over having to leave them when I know how big of a shock and scare this was for them yesterday! But I am grateful that we had enough time to tell them in person, to let them see and hug Ella Kate and know she is OK. Ella Kate has repeatedly asked about her Bubba and Sissy. Kolby and Rhett are both great with her. I know they are in excellent hands. Oh the prayer request and praises could go on for hours....

We are so blessed as we stand at the beginning of this unwanted but unavoidable journey.
Yesterday changed the lives of every member of our family, and it is really scary.  But it didn't ruin our lives. I am grateful for that.  And I am rambling.... Maybe I will catch a few Z's before the 6am blood sugar check. Thank you. Keep praying.