Imagine...

Imagine someone tells you they are going to kill a child and YOU are the only human being that can prevent it from happening.

Now, imagine you have struggled with years of infertility treatments, surgeries, etc. You KNOW what a miracle every child is.

Imagine you held one of your own children as she died and were willing to take her place without question.

Now add to this the fact that the child that is going to be killed has some very major things in common with the child you lost.

Given this scenario, how do you feel? Confused? Overwhelmed? Sad? Hopeful? Terrified?

Well I certainly felt all of these things and more recently. In the advocacy work that I do, I encountered a woman who is pregnant with a baby boy. The baby has just been diagnosed with the same heart defect Gabby had and Down syndrome. The woman lives in another state, far from KY. When I first talked with her, she was planning on terminating/aborting. I gave her some info about Down syndrome and heart defects. I shared Gabby's story. I told her Gabby's case was rare and that most babies with DS and heart issues do just fine after surgery (very true). The woman and I sent each other a multitude of messages, discussing some very emotional and in-depth stuff. I had (and still have) great compassion for her and her situation. While I truly adored Gabby and always will, I do remember how difficult it was when we found out about her heart and her Down syndrome. It was a very frightening and confusing time. At the time, it was probably the hardest time of my life.

After many discussions with this woman, she told me she wanted ME to adopt her child. She said she would not choose the adoption route unless Jason and I would agree to adopt her baby boy. I gave her all the info about the Down syndrome adoption program in the United States. But she was not interested. She said she would abort her child unless Jason and I would agree to take him. She said she could tell that I obviously loved Gabby deeply and would be an excellent mother to her child because I would love him like nobody else. Though terrified of adding another child while Lincoln is so young and with all we face with the girls, I began to make plans. I started to do my adoption research once again. Jason and I have considered adoption for many years - starting around 2000, when we'd been struggling with infertility for quite some time. In fact, this is where McKenna's name came from. It was the name of a child I saw on an adoption website. Over the years, we've checked into adoption several times. After Gabby died, I felt a calling to adopt a baby with Down syndrome. I had a telephone conference with the woman in charge of the Down syndrome adoption program. We got the paperwork and I started on it - with lots of prayers that God would help us get some of the grants available to those adopting a child with Down syndrome. Then...much to our surprise...we found out we were expecting Lincoln. I put the papers aside and stopped doing my research on adoption.

Recently, when I thought we'd finally be adopting, I started to let my heart get attached to this little unborn baby on the other side of the country. So much went through my mind. Where will he sleep since we have a 3 BR house and already have 5 people here? Will he be so close in age with Lincoln that it will be overwhelming because of his special needs? Will I be able to hand over another child for open-heart surgery after what I've been through? How will this affect the girls, especially if I lose another child? How will I handle grieving over Gabby and welcoming a child with so many issues like Gabby had? Do I have all the clothes and things this baby will need? How will I handle this with the health issues I have? Basically some of the same questions I asked myself when we got Gabby's diagnoses were popping up all over again. But once again, I knew God would take care of us as He always has. I knew I did not encounter this woman by chance. I knew I was doing the right thing even if it was something others might just view as a "mess" that I should totally avoid. I just kept picturing this little baby and thinking of how he needed me. And I kept thinking of how much I wanted him. I realized that there are few people that would want this baby the way I want him.

After a lot of discussions with this woman, she wanted to know more about my religious beliefs. The discussion turned to abortion. I shared my very pro-life views and also my faith in God. The woman became angered even though I presented my beliefs in a very non-threatening way. Out of the blue, the woman used some profanity and told me to go away. I have not heard from her since. Her abortion is scheduled for July 1st. She will be around 20 weeks along. She feels that death is better for her baby than living with Down syndrome. As horrible as that seems to me, it is not surprising since nearly 94% of women with a prenatal Down syndrome diagnosis choose to end their pregnancies. The world views certain babies as disposable, and that sickens me. I am no Biblical scholar, but I am fairly certain God did not say only "typical" babies were created in His image. We are ALL created in His image, and we ALL have value to God. This little unborn baby is just as important as any of my children...any of YOUR children...any of us.

I have been sad about this for obvious reasons. McKenna picked up on this and asked me what was wrong. Though I did not tell her anything about abortion, I told her there was a woman pregnant with a little baby that has Down syndrome and heart defects like Gabby had and that the woman doesn't want her baby. McKenna looked angry and said, "Mommy, every baby is special. Even if it is born with no foot or 3 arms or whatever....they are ALL special. Why wouldn't someone want a sweet little baby? That's not very nice, Mommy." I am so proud of McKenna. My response was, "I don't know honey. It's just not right. We need to pray for the baby and for the woman."

I am left heartbroken over this but know I did all I could do. I ask that you pray for this woman and this precious little baby who may never have his chance at life.

Enjoying baby brother!

Little Lincoln is 5 months old now. I can honestly say, we're enjoying every single day with this little man. That's the funny thing about losing a child; it makes you truly learn to soak up every last drop of joy in each moment with your children that remain on Earth. I find happiness in the moments that seem boring and insignificant to so many mothers. I kiss him and then I give him another kiss...just because...our next breath is never a sure thing. I find myself continually in awe of the blessings God has given me in each of my children. That alone is an amazing gift.

McKenna finished 3rd grade and received 4 awards (reading, creative writing, social studies, and the principal's award). She had the highest score in her class (or possibly 3rd grade) on end-of-the-year assessment testing, even though she is the youngest in her grade. McKenna had to overcome a lot this past year, and she has a long way to go. Every day brings many challenges for her and for Jason and I as we parent her, but she is a beautiful, intelligent, hard-working little girl. She is amazing!

Olivia graduated from kindergarten with 3 awards (reading, music, and the principal's award). She is doing VERY well in school. She went to 1st grade this past year for reading, and from what we've heard, she will most likely be in a 1st/2nd grade split class next year.

Mr. Lincoln is growing well. He'll be going back to the cardiologist some time next month to check on his ASD. We're praying for good news.

The girls are so in love with Lincoln. They STILL fight over who gets to hold him or help with his bottles. McKenna has made a few comments that make me think she has a greater appreciation for Lincoln because of losing Gabby. She seems to have a very special bond with Lincoln, and that is very unique for McKenna. One of her favorite things to do is "babysit" by sitting on my bed with Lincoln. She gets so excited about it and will just sit there for 30 minutes or longer, "playing" with Lincoln. He is thrilled by it, and McKenna is too. They are quite a pair! It is so sweet to see the girls enjoying their baby brother so much. They sometimes tell him stories about Gabby, and that warms my heart.

Difficult day

I have dreaded and anticipated this day for a long time. Today Lincoln is the exact same age as Gabby when she died. Up until now, I guess I've felt as though I could handle it if something happened to him. I know that may seem like a morbid thought, but a grieving mother has many thoughts that most will not understand. I know it is harder to say goodbye to a child the longer one has had to hold that child in their arms. The nightmares that I have are becoming more intense. When I think of all the wonderful times spent with Lincoln so far, I just cannot wrap my brain around the fact that I lost Gabby at this age...when so many memories had already been created. I cannot imagine life without Lincoln, but I couldn't imagine life without Gabby either....until I was forced to experience it. I see Lincoln smile, and I am reminded of Gabby's smile and how much I'd love to see it again.

It is hard to accept the fact that Lincoln is now aging beyond his big sister (in my mind, at least). When I look at photos of my children, Gabby will always be a baby. That is so difficult for my mind to process.

Please keep me in your prayers. Experiencing post-traumatic stress disorder along with what is most likely another round of postpartum depression is not easy....especially when caring for 3 children and dealing with some other health problems. Most days, it still feels like it was just yesterday that I lost Gabby. The pain certainly hasn't lessened, and I know it never will.

Today, as I hold Lincoln, I will recall the day I held Gabby in that PICU room as she took her last breaths. I will thank God that Lincoln is here. I will thank God for the time I had with Gabby and for her impact on the world. I will be reminded of what I have been through and how God has given me the strength to be able to function since that November day. I will pray for God's guidance as I move forward and grow more attached to Lincoln every day.

Mother's Day 2011

Today was such a special day. Last year, I sat in church during the baby dedication ceremony with my heart broken. I should have been participating with Gabby. Instead, I sat there with no baby in my arms and also knowing Jason and I were once again facing infertility issues. I felt some strange pains and just knew it meant another failed cycle of trying to conceive. I cried when a stuffed lamb and Bible were presented to Jason and I in memory of Gabby. After church, we visited the cemetery and I felt so much sadness. The next day, our 13th wedding anniversary, a home pregnancy test revealed an answer to so many prayers. PREGNANT!

Today Jason and I participated in the baby dedication ceremony with Lincoln. What a miracle! What a tremendous blessing to be holding my son in my arms today. I must admit that I felt like Gabby was right there with me, at least in spirit.

After church, we visited the cemetery. It was the closest I could get to having all four of my children together on Mother's Day. Lincoln had his first visit to big sister's grave. It was a very special moment.

My sweet little Gabby, I miss you so much today and always. I'm sending tons of hugs and kisses up to Heaven for you today. You are so missed, baby girl.

Regrets

There are some days when I'm just very angry, especially at myself. I suppose it goes along with losing a child. I want to be happy and cheery with no negative thoughts entering my mind, but I simply cannot. Some days I just want to scream and hit something...really, really hard. I just want my daughter back.

Even when Gabby was a newborn, I was already doing my research on where to take her for her open-heart surgery. I talked with other parents and did a lot of reading. I was upset to see that UK Children's Hospital wasn't even in the top 30 pediatric heart hospitals in the US. There are only 50 states. You do the math. My instincts were telling me to take Gabby somewhere else. But Jason wasn't really supportive of that, saying Gabby would be just fine going to UK. After all, how would we manage to travel out of state and who would take care of our other children while we were gone? I was determined to overcome those obstacles, as I felt that Gabby needed better care. So I contacted some charity organizations that provide airfare for medically fragile children. I got no response. I contacted them again...still no response. In the meantime, I was trying to keep up with Gabby's appointments, therapies, and the usual needs of a young infant. Oh...and of course there was a house and 2 other very unique little ones to care for. But I did what I could to TRY to get care for Gabby elsewhere. I contacted a couple of the top children's heart hospitals in the US. I began to corresponding with the head nurse of one of the most famous pediatric heart surgeons in the world. I then spoke with the business office of the hospital with which he is affiliated. I was told that Gabby's insurance MIGHT cover her surgery there, but it would take many weeks to get it arranged. Gabby's condition worsened. We didn't have many weeks. She needed surgery ASAP. It seemed that Jason just didn't even want to attempt to take her out of state, but even still...I wanted to and would have done it without question if the money hadn't been an issue. But we didn't have a couple hundred thousand lying around to pay for travel and open-heart surgery. We were struggling just to pay for travel within the state. So, I spoke with our pediatrician who assured me that everything would be fine, and I made the extremely difficult decision to give up on trying to take Gabby out of state. I know there are no guarantees that going elsewhere would have changed the outcome. And somewhere deep within me, I believe that it was just Gabby's time to go. BUT....I cannot help but wonder...what if... From the research I've done since Gabby's passing, I have learned that there are many reasons to question the way her care was handled. I think a better pediatric heart hospital would not have attempted surgery until her pulmonary hypertension was controlled. And it was the pulmonary hypertension that led to her death.

Because of all this, I have a really hard time when I hear about fundraisers for other children facing major medical needs, especially when those children have insurance coverage to go where they need to go. Don't get me wrong. I am not heartless. I wish those children and their families the best of luck and hope they get tons of money to help them get through their tough circumstances. But it just makes me wish I had spoken up and asked for help. Gabby had no benefit events...no website taking donations...no items being sold to raise money. I am most certainly not saying we did not get any assistance. We did get some, and I am forever grateful. But it takes A LOT of money to pay for travel out of state and open-heart surgery. I thought about trying to have a fundraiser, but I was too afraid to ask for assistance. Why should anyone give us money to help pay for our daughter's medical expenses? I didn't think it was okay to ask for money from others. That's what I thought at the time. But I wish I'd taken the lead and organized some sort of event to come up with at least enough money to attempt to get Gabby what she needed. I don't know how I would have done that with all I had going on at the time, but I wish I had. Now...I have to live with that regret every single day.

Updates

It's been quite some time since I blogged, but I'm hoping to grab a few minutes to update right now.


LINCOLN

We were shocked to find out that Lincoln has a congenital heart defect. We took him to the cardiologist in Louisville for an echo as a precaution due to our history and because the nurses in the hospital nursery noticed an irregular heartbeat. The cardiologist heard a murmur and then did the echo. Lincoln has a small to moderate ASD (hole between the upper chambers). It is not a major defect by any means, but it was certainly not the news we expected. And it was very hard to hear it after what we've been through. The cardiologist took us into his office to talk to us about it, and I could tell he really hated to give us anything but good news. We know all too well that any heart defect in a child is a serious matter, so I have to admit I left the doc's office in tears. But we are very hopeful that Lincoln will never need surgery for his ASD. Unless he's showing any signs of congestive heart failure, we do not need to go back to the cardiologist until he is 6 months old. At that time, they will do another echo to see if the defect has changed.

Lincoln is doing well. He's a very sleepy baby...already sleeping through the night! That is amazing to me since McKenna and Olivia didn't do that until they were 12 mos. old. Lincoln is a very happy baby with tons of smiles for everyone. He had some trouble with slow weight gain in his first month (maybe due to his heart?), but he's gaining well now and is around the 50th percentile for weight. He often reminds me of Gabby, as he has some of her features. The girls are so in love with him and enjoy playing with him and getting him to smile. Little "Linky" is very special to them for so many reasons.



MCKENNA

After a long wait and a thorough evaluation by a child psychiarist, we finally got an official diagnosis for the issues McKenna has been having. She has been diagnosed with "Anxiety Disorder - Not Otherwise Specified...with compulsive tendencies." When she was younger, she was diagnosed with ADHD and sensory processing disorder. We suspected there was more going on, but it took a long time to get the evaluation arranged and completed. The doctor said she sees lots of symptoms of Asperger syndrome in McKenna as well as OCD, but she does not feel these symptoms affect McKenna severely enough to warrant a diagnosis of those conditions. However, the doctor is very conservative and I am not sure I agree with her completely based on the research I've done. But the important thing is that the doc sees the issues McKenna has and what an impact they have on our entire family, and she has suggestions for helping McKenna both at school and at home. She recommended regular therapy, so I am going to do my best to figure out how to make that happen. She also recommended talking to our pediatrician about a natural supplement that might help McKenna get to sleep at night. It often takes her over an hour to fall asleep, even if she's had a very active day. Her anxieties get the better of her, and her body just cannot relax. The doc also addressed McKenna's extremely high IQ scores and suggested we look into enrichment activities outside of school in addition to the gifted/talented programs the school offers. We may at some point pursue a more thorough evaluation in Louisville, but for now I am glad that we know more about what is going on with McKenna and how to help her.



ME

I was finally able to see an orthopedist about my pelvic issues. I had an x-ray done and was diagnosed with Symphysis Pubis Diastasis. It is the most severe and permanent form of Pubic Symphysis Dysfunction (not uncommon in pregnancy). I have had some degree of problematic pelvic separation in all my pregnancies. Usually the pain improves after delivery. This time, it just hasn't. The bones are very much out of alignment and that is why I sometimes struggle just to walk down the hallway. Sometimes it "locks" up and I literally cannot take a step no matter how much I want to. Sometimes I cannot get to Lincoln when he is crying, and he has to wait on me to waddle down the hallway at a snail's pace. The doc says there is a surgery that can be done, but it involves metal plates and pins and a lengthy amount of time on full bed rest. And the surgery has not been shown to be very successful. I simply cannot give up my mobility for several weeks or months. I have a family to care for! Jason cannot take off work that long either, so surgery isn't an option. I asked the doc about physical therapy, and he said it would not be useful in this situation. But I have done enough research to know that some people have some improvement with chiropractic, so I hope to be able to give that a try. I am praying that SOMETHING will work. I need to be able to take care of my children and home. I cannot do a very good job of that if I cannot walk and lift things. I know I have so much to be thankful for, but I have my days when I am just so tired of being in pain. I just want to remember what it's like to be able to take steps without hurting...to go grocery shopping....to take a long walk....to clean my house from top to bottom....to lift my baby without being in pain....to get out of bed in the mornings without having to wait on my bones to unlock...to drive without it making the pain worse....to be able to keep up with my children when they are walking across the soccer field. There are just so many things I cannot do because of my pelvic issues, and I want so badly to change that! I am too young for this!



TORNADO

The recent tornado in Lincoln County took off a large portion of our roof shingles. We were home when it happened, and it sounded like the roof was going to be ripped off the house. We ended up with water in the attic and some damage to our walls and ceilings. The entire roof had to be replaced. After 5 days of workers being here, it is finally done. This week, hopefully, we'll get painting and drywall work done. It's going to be crazy for a while, but we'll manage. We're just thankful we all survived the tornado and that the damage wasn't worse.

6 weeks old!

Mr. Lincoln is 6 weeks old today. He's doing okay other than some reflux and thrush issues. Here are some recent pics.