I never forget

This time of the year has always been emotional for me.

5 and 6 years ago at this time I was preparing my body to do something so simply amazing---carry my child.

After so many years of not being able to accomplish that, knowing that I was going to be literally watching my babies on a big screen being put into my body with the hopes of growing for another 9 months---it just seems unreal.

I remember those feelings 5 and 6 years ago so clearly. I was so very excited. At this time I was pumping myself up with shots and medications, going in for ultrasound after ultrasound to see how my uterus was looking, etc. So much preparation.

All for the love of children.

I know the only pictures I have of them are them as tiny, tiny cells.
I know they only grew in my body for a couple weeks.
I know I never heard their heartbeat.
I know I never held them.

I also know they were babies.

5 years ago, I was the proud mother of 3 babies. 6 years ago, again I was the proud mother of 3 babies.

And it still stings.

I often wonder what my babies would have been like, especially as Hannah gets older.

Would their hair look like?
Their eyes?
Are they boys or girls?
Would they like to sing like Hannah?
What would their personality be like?

I know 3 would be getting ready for kindergarten in the fall.

Kindergarten.

Sometimes that's just hard to think about.

I can't imagine my life without my daughter, Hannah. I didn't realize how much I needed her until she came along. What would my life be without her? The thought is too much to bear. Gosh, I love that girl more than anything in this whole world and as time goes on and I see her personality grow, her attitude become more evident and her spunky, smiley girl who loves to sing and dance....I just wonder...

What about my other babies? What would they be like? What kind of life would we be leading now?

Some days I just plain miss them.

I love my Hannah. I love her in my life. I'm so grateful to God for allowing me the honor of raising her as I couldn't imagine a daughter being more suitable for me.

But, I just want to see my other babies. I want to hold them. I want to hear their laughs and giggles. I came so close 5 and 6 years ago---so close.

I know one day I'll see them. But some days, I wish it was sooner rather than later.

Easter 2016

We hope you all had a wonderful Easter!

14 years ago today

14 years ago today Mark received a kidney from his brother. On World Kidney Day I shared his story. Today I'd like to share a special story I wrote shortly after his transplant that has been published by several newspapers and shared by and inspired so many.

Here it is:




LOVE SIGNS


Ever since we started dating, Mark and I have always had a special love and bond. We are always together and so much in love. Maybe it is his sickness that has brought us so close together.


Mark has been fighting diabetes for over 40 years. In 2000, he started showing signs of kidney failure due to his illness. Two months before we got married in May 2001, he was forced to start dialysis. Every other day was spent driving him up to the dialysis center. I was fortunate that I worked across the street from our house and was a couple blocks away from the dialysis center. I could always drive him there and pick him up. The hardest part about it was dropping him off and leaving him, knowing I wouldn't be talking to him for at least four hours. Having my uncle die in 1988 on the dialysis machine made it even harder to leave him.


Mark has always been a very quiet, shy guy. Although he's always been very romantic and has always treated me like a queen, he's never been one to show a lot of emotion in public or around other people. I, on the other hand, love to show emotion at all times. I've always been one to say "I love you" when I'm leaving Mark for even a minute. Even just going to the bathroom or to another room, I'm always giving Mark a big kiss and telling him how much I love him.


Well, you can imagine how much it bothered me leaving Mark at dialysis without being able to say "I love you" or showering him with kisses. It would have been too much for Mark. So, to make us both happy, we made up our own "I love you" hand signal. It was a hand signal that only the two of us knew and a way that both of us could be satisfied. I could leave knowing the last words I "said" to him were "I love you" and Mark didn't have to say it in public. It was a perfect set-up.


This went on for almost a year until his kidney transplant. I would drive him up to dialysis every other day and every time I left him, we would give each other the hand signal.


In March 2002, Mark had his kidney transplant. Because of his weak heart and other issues, it was a longer surgery than expected. And after the surgery, Mark was sent to ICU with a breathing tube down his throat. He wasn't able to talk at all. I could tell Mark was very frustrated with the whole situation. He would consistently try to move and get comfortable. I knew he was very upset about having the tube in and it broke my heart to see him go through it.


I thought he was mad at me. The nurses would talk to him and he would nod or shake his head. When I tried talking, I would hardly get any movement. I knew he hated having that tube in and was very frustrated about his whole situation. I was so depressed and sad because I didn't want him hurting like that. I spent the first couple hours after the surgery crying because of everything Mark had to go through. I prayed to God to show me some sign that he was okay and he understood what was going on.


I kept going in every ten minutes--as much as they would allow me to. Nothing was changing. I could still tell that he was so frustrated and uncomfortable. It was heart breaking.


Visiting hours were over at nine, so my mom and I went in to say good night to Mark. He was still having problems getting comfortable and was still incredibly frustrated. I held his hand and explained to him that I had to leave for the night, but would be asleep in the waiting room and would come back during the night to check on him. He slowly nodded and I began to cry as I softly kissed his hand.


I was still crying as I turned around to leave. My mom stopped me and turned me around to Mark. His hand was lifting off the bed and ever so slowly formed our "I love you" sign. I ran back to Mark's bed and grabbed his hand said "Oh, honey, I love you, too. Do you know that?" He squeezed my hand and nodded. It was then that I knew Mark was okay and everything was going to be fine. God had sent the sign I had asked for and needed to see so desperately.

Such a misunderstood disease

The other night I had trouble sleeping as I was trying to figure out my week and remember everything. I knew Mark had an appointment with the foot doctor this week, another appointment for his defibrillator check, I had to pick up insulin from the drug store, had to call and set up an order for his monthly meds, call the eye doctor about the floaters he’s been having and also set up labs for his routine kidney function checks.

It hit me what a friend told me once: “Diabetes is the most misunderstood disease. So many people think you just watch what you eat and give yourself insulin and you’re fine. People don’t realize that it affects the whole body”.

How true is that.

I can literally start from the top of Mark’s head to the tips of his toes and tell you something in every single part of his body that has been affected by diabetes. Not too many people can say they’ve been evaluated for 3 different transplants in their life—but Mark has (kidney, heart and pancreas).

I can’t tell you how many times I’ve seen Mark cringe and when he tells me he has pain, I’ll ask him if it’s chest, stomach or nerve pain or something else. I always know he’s in pain—just not sure which is the worst at that particular time.

It breaks my heart.

Oh how I wish he could have one pain-free day. Poor guy. I feel so bad for him. But when you ask him he says he never wants anyone to feel sorry for him. He knows people go through worse. He simply wants people to understand. He wishes people knew just how serious diabetes is.

I remember one time he was talking to someone about his heart issues. This person said “I thought they fixed your heart before the transplant”. They did do bypass but those bypassed vessels are now 100% blocked and the only way Mark is still alive is because his heart “made” new vessels. The bypass surgery was simply a temporary fix to go ahead with the kidney transplant and we knew it wouldn’t last.

When Mark’s brother passed away, Mark’s friend told him “Honestly, I thought it would’ve been you before him. You were so sick for so long. Now you’re okay but back then you were so sick”. What people don’t realize is a kidney transplant doesn’t “cure” diabetes---it simply puts on a Band-Aid. We’ve been fortunate that the Band-Aid has stayed on for as long as it has with regard to his kidney. The rest of his body hasn’t been so fortunate.

The other day he told me he felt like his body was shutting down. He said he wished people understood just how much he goes through.

So, that’s our mission---to educate people, to help others understand. If you have any questions, please let us know. We want to educate and help people understand. That’s all we want—no sympathy, just understanding.

And prayers never hurt. :)

Struggling to understand

Last week I heard of a type 1 diabetic who was 51 years old who had recently passed away from diabetic complications. He was diagnosed when he was 7. His wife was 39 years old and they had a young daughter who was 7.

It sounds eerily familiar, doesn't it?

This man was very active with the youth and his death was affected by many.

I admit I struggled with this much like the way I struggled with the fact that a very good family lost 3 of their girls in a tragic accident a couple years ago.

The guilt is almost too much for me sometimes.

Mark has beaten the odds so much in so many ways. He shouldn't be here. I know this may sound just awful but in some ways I struggle with the fact that he is still here.

Let me explain.

Mark has constant pain--constant. Some days are better than others but some days he's in so much pain he is screaming and crying, lying on the floor, clutching his feet, sometimes to the point of clutching it so bad the skin breaks and bleeds. He says sometimes he feels if he can just open it up, the pain will come out. :( I can't imagine living with that kind of pain and he's had to do it for years. I'll never forget back in 2002 I prayed to God that Mark would have one day where he would wake up and tell me "Wow! I feel good! Let's do this, let's do that!", and at the end of the day, I would feel exhausted from doing so much because he finally had one good day with no pain.

I'm happy to report that God in fact did answer my prayer. One day, to the surprise of many, Mark woke up with no pain. We went shopping, we had a picnic, we hiked and at the end of the day I was exhausted---but Mark wasn't.

It was the best day of our married life. A true answer to prayer.

It was the only day he's never had pain.

I love Mark so much. I love him with all my heart. If he wasn't here, I'd be broken. I'd miss him so much.

But I HATE seeing him in pain. I hate it. He no longer can walk or hike much due to pain. He can't see very well at all and may be blind in another year or so. He doesn't have a driver's license. He isn't involved with the community or helping out with kids---unless you count Hannah. :) He just physically isn't able to do much at all.

So, how does God justify taking people who do so much for the community, taking little girls who have so much life to live and so much to give----and leave Mark here who is struggling with so much pain? I know Mark is a Christian and will be in heaven when he dies. He will no longer have pain, no more suffering, he will be able to see. The thought of heaven makes me so peaceful.

I'm tired of seeing Mark in pain. I'm tired of hearing so many stories of people killed or passing away who are doing so much for the community and could continue to do so much. I can't tell you how guilty I feel at times knowing Mark is still here while hearing tragic stories. What makes Mark so special? And why is he still here when he suffers so much more than anyone knows.

I know I shouldn't question God's ways and His plan---but sometimes it's so hard to understand. So hard.

It's so confusing to be so grateful to God and yet struggle so very much to understand.

Mark's transplant story

March 10 is World Kidney Day. In honor of that day I’d like to share our transplant story.

Many people know Mark received a kidney transplant in March 2002. What many people don’t realize is the huge struggle it was for it to happen and that it almost didn’t happen.

Mark has 7 siblings who all got tested to see if they were a match. His mother also got tested. His father had passed away. Family members are most likely to result in a successful transplant so they like to look at family first. We were very blessed Mark had as many siblings as he did as it turned out he had type O blood. This meant he could only receive a kidney from someone with O blood. Other blood types can receive from that blood type plus O, thereby doubling their chances for a match. However, in Mark’s case because his blood type was O, we were limited even more.

Nonetheless, 3 brothers did come back with the same blood type as Mark. His other 4 siblings and mother had type B blood. Many times during the transplant process I asked God why Mark couldn’t have type B instead of one of his other siblings. Then any of the siblings could have donated. It seemed cruel that Mark had a 50/50 chance of making this so much easier, and we were dealt the hard hand….again.

Little did I know this would be only one hard hand of many.

Because of cost issues, the Transplant Center would only test one possible match at a time. Donors have to go through a lot of testing before they can be considered for transplant---lots of testing.

Mark’s brother, Buddy, was the first to undergo the testing. He went through it all and we had a potential transplant date of November 27, 2001. Mark underwent his testing and we went to the Transplant Center the day before for the final testing. This was all day testing for both Buddy and Mark. While Mark was in dialysis, Buddy was in recovery after undergoing a procedure to figure out which kidney they would use for Mark. It was here we found out devastating news.
The kidney has vessels that supply blood to it. Normally a kidney has 1-2 vessels. Rarely will a kidney have more. One of Buddy’s kidneys had 4 vessels while the other one had 2 but also had a possible cyst. The more vessels a kidney has, the better for your body---unless you’re dealing with a transplant. Then the transplant team wants 1 as there is better chance for the kidney to work in the recipient. They will do it with 2. Unfortunately because of this and the possible cyst on the other kidney, Buddy was ruled out as a potential donor the night before the transplant.

It was devastating.

They told Buddy, Mark’s sister and I the news and then was going to go tell Mark while he was receiving dialysis. I refused to let them do it and wanted Mark to hear it from me. Telling him was the hardest thing I’ve had to tell him. When I told him, his face fell. I knew he was disappointed. But then he looked up and said “We need to make sure Buddy is okay”. We were all concerned about the possible cyst on his kidney and what that could mean.

Mark impressed me that day. He had a chance to feel better himself but he was focused on Buddy and making sure he was okay.

It wasn’t much longer that the second brother, Paul, was tested. He didn’t want us to go through the devastation we had gone through with Buddy so he adamantly demanded all testing to happen before the transplant. We were glad he did. In a rare turn of events, Paul’s kidneys both had 3 vessels. He was ruled out.

We were down to the last brother and really Mark’s last hope for a chance of a more successful transplant. His brother, Scott, also demanded all the testing and at this point the Transplant Center also agreed. It turned out one of Scott’s kidneys had 2 vessels and one had 3.
Normally they would continue testing donors to see if there was one with one vessel. But at this point, they knew the options were limited. They knew Mark’s chances of a successful transplant were lower with having 2 vessels but his health was failing and they thought it was his best hope. They prepared to set the transplant for the middle of January. Before it could happen though, they wanted Mark to undergo routine labs and tests again as it had been awhile since they had been done with all the failed donors.

He underwent an echocardiogram which is an ultrasound of the heart. It was then that shockingly they discovered between November and January, Mark had had a silent heart attack and he had severe heart damage. His heart was only pumping at 15%--very low. We were referred for a heart transplant.

That’s right---we were looking at not only a kidney transplant but suddenly a heart transplant.

This was the first and only time I’ve ever heard Mark say “I give up”.

Mark underwent more invasive heart testing to evaluate his heart. This showed that while his ejection fraction was indeed extremely low and there was severe damage, the heart wasn’t bad enough to be considered for a heart transplant. We were given the okay to go ahead with the kidney transplant but there would be a 50/50 chance of him not surviving the transplant. They would need to have a cardiologist in the room along with other doctors in case something happened.
It was our only hope at this time and so we went for it.

On March 21, 2002, Mark received a kidney from his brother. We were told we would be lucky if it lasted 10 years. We will soon be celebrating 14 years.

It’s been such a blessing to watch Mark amaze the doctors continuously. So many don’t know why he is still here and I often reply with “God. God knows why he’s still here”.

What has been even more amazing is watching the bond Scott and Mark have. They are so close. Seeing them together melts my heart. They always say they love each other, always hugging and always calling each other. They’ll always have a special bond no one else could ever take away.
I’m so proud of Mark, so proud of Scott and so happy to have my husband here. We weren’t given that long but Mark has continued to state he isn’t going anywhere---and he continues to prove that.

We are so grateful to donors, living and deceased, as they give a gift no one could ever imagine.
One day I will give a kidney to someone. God will let me know when the time is right. I’ve had a couple chances but God has closed the doors. One day, though, I will. God gave us 2 kidneys---one to keep and one to share. I plan to share mine with someone one day so they can have their own story to share.

My rainbow baby

While we were struggling with infertility, I used our journey to be like a rainbow. We were traveling on the rainbow and soon we would get our "pot of gold". It was a way I held onto hope.

Pretty soon so many people associated rainbows with me and our journey. Whenever I saw a rainbow, I would feel hope again. Whenever I'd get a text from a friend, "I saw a rainbow!", I'd feel hope again.

I've come to really love rainbows.

I wasn't until we had Hannah that I found out what a "rainbow baby" was. A rainbow baby is defined as "A baby that is born following a miscarriage, stillbirth, neonatal death or infant loss. In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison."

How true is that.

I think it's no coincidence that rainbows were just a huge part of our infertility journey and to know that Hannah is indeed our rainbow baby.

And then we got this rainbow shirt as a hand-me-down. It's like God is constantly reminding of the rainbow and what it represents not only in my life but the promise He made.

So glad there are rainbows and rainbow babies to enjoy in this world. So much meaning behind it.






Hannah with her rainbow shirt