Hey Sweet girl,
It seems like yesterday you were here but yet forever ago. While I don’t remember the actual birth day as well as the others (I know, that’s bad) I remember the months leading up to your birth and even right after with such clarity. Now that I think of it – it wasn’t any different than the time you were here. We were filled with worry and concern.
You see, during a routine blood test while I was pregnant they told me you would have problems. We did an amniocentesis to find out more…if you would have issues we wanted to make sure we were getting the right care for you. We had no idea what we were up against.
After the test they told us you were just fine. But what we didn’t know was that an amnio simply counts the chromosomes and doesn’t look at the structure of each chromsome. So, we left the office continuing to think we were having a healthy baby girl. While excited, I knew – some part of me knew – and continued to worry that something wasn’t right. I even requested your pediatrician be present in the delivery room.
You were a planned c-section. So, I showered, did my hair, even put makeup on to arrive early to the hospital. People commented after you were born it appeared like I didn’t even have a baby.
Your Daddy, he cried. He literally found himself unable to speak about you. It was when I knew you were the apple of his eye and all the comments about “daddy’s little girl” were definitely true.
You were born and there were no cries. But, they showed you to me, I was elated, had just had a c-section and just wanted to hold you. Nonni followed you into the nursery with the pediatrician and they talked – something was off to Nonni, but it was dismissed. You were fresh out of the womb.
You were born with an ear that poked forward, a very loud heart murmur (later diagnosed as a hole in your heart), an indented chest called a pectoral excavatum and impacted teeth. Yes, you could see two teeth that were inside and at 2-3 months old they came poking forward.
All of this seemed different, but they told us that, separately, it was all ok. But, these things as a whole – they would make me question later if there was something else going on.
We took you home in the exact outfit I wore home from the hospital soooo many years earlier. Your brother who had just got released from the hospital himself from a week’s stay couldn’t wait to get you home. He loved you already.
Your first few months were rough. You didn’t cry much and you hardly slept. I would nurse you for an hour & 1/2 and then you would rest for an hour and be back up to want to eat. I found out later that you had low muscle tone and would have trouble swallowing. After a month of exhaustion I started pumping and watching you eat from a bottle to know how much you were getting.
After a few months I noticed you could barely hold your head up. Late, when everyone was sleeping and you were as well I pulled out pictures of your brother Devin. I knew specifically of the one I knew would be where he was 3 months. The one by the Christmas tree.
After searching I fount it. I saw he was propped by our Christmas tree and holding his head just fine. I frantically thumbed through other pictures and realized your lack of neck control wasn’t normal. Not at this age.
I started to think. I thought about all of your issues and wondered what caused everything to happen. One day, in the quiet of my office cube, I called your pediatrician shaking. I left a message and about an hour later she called back sounding concerned and asking me if I was ok. I told her I was upset and worried that we were looking at everything separately rather than as a whole – WHAT caused all the things to happen?
She told me to wait…wait to evaluate at the 4 month check up. Work on tummy time. Let’s talk then. So, I did.
At your 4 month check up you had a 104 fever. You were so lethargic and you were diagnosed with a kidney infection. Your Dr. finally confirmed what I had shared with her earlier – that something else was wrong. She didn’t know what but she thought you needed to see genetics. My fears…they were all right there slapping in my face. I felt the room spinning.
I remember telling the Dr. I wasn’t waiting 8-10 weeks for a specialist appointment. I told her I felt like we were running against a ticking time bomb and we needed to get you interventions as soon as possible. The longer we waited, the longer you didn’t get the help you needed. I don’t know how I knew that – it wasn’t like I had a history of specialists. Not like I had ever raised a special needs child or knew about services.
The Dr. told us to hang tight she would try to call to see when we could get in. She came back, wide eyed, saying “well, it is 8-10 weeks out.” So she came up with a plan for you to become inpatient at Children’s Hospital and get genetic testing which would ensue right away once there.
You were diagnosed 5 weeks later.
But, that 5 weeks waiting was hell. Your Daddy and I would argue. He would tell me you were ok. You just needed to be worked with. I would stare at you in your crib hoping that some feature would pop and when I googled I would magically find out what was wrong.
But we waited and it seemed like forever. They told me they would call us and have us come in either way. I remember receiving the call and leaving for that grueling long drive to tell us your diagnosis.
I won’t repeat that day getting the diagnosis. I remember that as well. Every single detail.
And now I sit on what would have been your 9th birthday I miss it all. Everything that you brought to our lives. The challenges, the love, the teachings, the sadness, the blessings, and the rejoicing for all you did and brought to our lives.
The first year you were gone I was numb. I smiled, I cried but I don’t think I really felt. Milestones like the birthdays and holidays occurred but again my emotions were bottled up as I still sat in shock digesting this was all still so real. Just last week Daddy said he looks at your picture every day and still can’t believe you are gone. I feel the same.
After the first year you were gone it was like reality set in. You were really gone. And I started to feel again. And it hurt. I remember saying to someone after church who had lost her son as well “why does it hurt so bad, why is year 2 worse?” She said because you aren’t numb anymore.
She is right.
There are days I feel an ache in my heart. And I’ve asked Daddy if he sometimes feels that. Like a hole that is gaping open wide that just hurts. Physically hurts.
I did some shopping the other day. We had a small gathering in honor of you. Daddy and I talked and said we couldn’t go without recognizing you and your birthday. But, out of the many shopping trips I had to make, just one toward the end threw me over the edge emotionally.
I was shopping for balloons. It has become a tradition to send them to you in heaven. But as I grabbed the bags I became upset. I kept thinking “this is so crazy, I’m getting balloons for a child that is no longer here. I’m getting cake for my child that is no longer here.”
And I was angry and sad and felt like I was going crazy. Should we be doing this? Should we be having a party for you? This wasn’t how this was supposed to go. YOU ARE SUPPOSED TO BE HERE.
As I drove to another store to get the balloons blown up I continued to stew on the fact that none of this was right. I found myself breathing heavier and upset. I moved into the store and as I handed the bags over to the owner who happened to be behind the counter I couldn’t speak beyond the tears.
She hugged me. She teared up and apologized for our loss.
I could barely speak. I could barely look at her. I started to apologize myself. I told her it was a party for you. And maybe it was wrong to do but you shouldn’t be gone. You shouldn’t be dead and I missed you.
I moved about the store trying to dry my eyes and get beyond what just happened. But, I couldn’t. I quickly left the store and continued to keep busy with the planning of your party.
Before church the next day we went to pick up some (other) balloons for your party. As we stood in line Grant told me I should buy a gift card. I laughed and asked him what for. He said “mommy, we should get this gift card and put it on the balloon so when it gets to heaven, Lydia could use it.” I smiled and told him you had all you needed in heaven and didn’t need a gift card but it was nice of him to think of you in that way.
We made it to church because the intentions in mass were for you. I like hearing your name echoed throughout church. But, church can also make me cry- especially after communion when I kneel down to pray.
The prayer is the same. To keep our family safe and healthy and for strength to get through each and every day. I always ask for just one more day of strength.
But this Sunday was different. I started yelling in my head at God. Not mad per se but just wanting answers. I’ve never asked him for answers before but the pain in the last week had become unbearable. I started to ask him why he took you. Why I, Tom and the boys have to endure so much pain? So, much – how much can one family take and why? What was this all for?
And I started to sob right there in church. I wasn’t angry at God, I just felt so lost to know why you weren’t here with us. You are supposed to be here. This is wrong in every way.
But, I stopped after I got it all out and wept and told God I knew you were safe. You were healthy and you didn’t have to endure needles, hospitals, Dr.’s, x-rays, and seizures. I knew you were happy and running and catching up with other wonderful people that had gone before you.
But it is all so hard as your mother remembering you in my belly, carrying you for 9 months and all you brought to our lives in the 7 years you were here to now mourning your existence. Having parties while you aren’t here feels so wrong but ignoring your having been here also feels wrong.
My daughter. My teacher. You brought so much more than being my child to my life. You taught me how it feels to love unconditionally. Even through tears of challenges we faced my love for you grew. You faced each new diagnosis with a smile, a belly laugh or a look that could kill that made me realize what was most important in life.
Each and every day was a new lesson on life and how to put it all in perspective.
You made me look at life in a new light. Small things became and still are …small.
You looked at life in a large way everyday.
You worked hard at EVERYTHING you had to do each and every day because nothing came easy. I use your example everyday with your brothers…showcasing your heart and stamina that you held to be better…to get better. You never gave up.
Just after you were diagnosed, in your dimly light bedroom, in the middle of the night, I had just got done feeding you in the glider rocking chair. As tiring as it was with your feeding schedule I loved our time together. I loved just holding you close.
After I sang “You are my Sunshine” I leaned toward you and kissed your forehead and I whispered as I talked to your quiet, sweet, sleeping face. I said, “We will show them…we will show them you are different. You will do things they tell me you can’t. We will do it together – we’ll show them.” I held you close and kissed your face again as you slept in my arms.
You did me proud little girl. In 7 years you taught me more than I would ever learn in a lifetime. You helped me find strength I never knew I had. You have people that love you that never even met you. You moved mountains without ever saying a word.
But, even with all that goodness I miss you so much. Sometimes, I feel like I can’t even breathe it hurts so much. Daddy says we’ll feel this for the rest of our lives. I’m sure he’s right.
I remember on the day of your death when I arrived at your bedside. I sang to you and after I swore I felt your presence and thought I heard your voice above me say “please don’t cry mommy, I’m the best I’ve ever been.” Oh sweet girl, I know you are…and as we think about you on your 9th birthday with you not being here with us we’ll try to remember that. You are pain free. You are good. You are the best you have ever been.
And as I always did when we were playing I would grab your belly and in my sing songy tone with each word getting higher and higher I would say “IIIIIIIIIII….LOOOOOOVVVEEEE….YOUUUUUUUU! Especially today we will remember you and love you just as much as we did yesterday, the day before and the days you were here.
Happy birthday sweet pea. You’ll always be my sunshine.