Getting out of the funk...

It's been so long since my last blog but I'm in such a funk these days I need to put my thought down before this world of mine literally implodes. So here goes.

My every emotion is dependent on my special needs child. When she's thriving and moving forward my mood is a direct reflection of that. Then on the other hand when she's had any amount of regression or set back my mood falls right in line. It's more than an emotional roller coaster that I'm on. Not only do I deal with the daily stresses of raising a child that is so different from our surrounding world but I also have the stresses of every day life. I'm raising two other children and try my best to ensure they have as normal of a life as possible.

Have you ever had a moment in time that changed everything going forward? Your entire world from that moment on was and is never the same and yet somehow you search through all the craziness trying to find one ounce of normalcy. That moment came for me the day I found out my child would be born with special  needs. I remember who was with me, where I was, the set up of the room, the lighting, everything in such vivid detail. Despite knowing there is no way to prepare yourself for all that is to come. How can you prepare yourself for heartache and love beyond anything you've ever known? You tell family and friends and after a pep talk and a few tears they've moved on with their lives and you are still there. Still trying to find some meaning and constantly looking for direction. Then every now and then those family members and friends come back around to tell you how great you're doing and how they don't understand how you do what you do. Well here's the secret from us special needs moms, WE DON'T EITHER!" We simply do what we have to do for our child. Do we have our days when we want to just give up? HELL YES! Do we have days when we feel completely defeated? HELL YES! Do we have moments when we just need to sit down and have a good cry? HELL YES! But then, then there are moments when our special  needs child has accomplished something that we were told they never would accomplish. Or a simple moment when that child looks up at you with a smile and despite being labeled "non-verbal" that smile says, "Thank you mommy, I love you too." That is when our spirit and our strength is renewed. We put back on our super momma cape and go back at it again.

Don't forget that we know our lives are so much different than yours. We know our child might not do certain things. The idea that my daughter will never have a wedding. I'll never be able to watch her have her own child. I will never see my daughter drive away to college or pile into a limo with her friends for prom. Those things never go away. But as a person in my life there are times when I simply need you to just be with me. We special needs parents don't want nor need your pity. We just ask for understanding. Understand that we know and understand that our lives are hard and different. Lend a helping hand when you can to help our lives be as normal as possible. See our child through our eyes and see past the syndrome. See them for the person they are and love them for that. Not because they have special needs. Understand that my absence is not my way of saying we are no longer friends. It's a sign that my life is absolutely crazy and this is probably the time I need you the most. When you brag about your typical child's progress understand my silence is not out of lack of joy for you. I am happy for you and your child. My silence means I'm sad that my child is still so far behind. That does not mean I want you to stop telling me about the milestones your child has met. Some days you will not be greeted with silence but understand some days for me are better than others.

Re-Birth of Blogging, Reality

It has been many months since I've last blogged. Life simply caught up with me and there just wasnt enough time in the day. Sophia is now 16 months old and over all she's in good health. This little girl, as tiny as she can be, is the strongest person I have ever known. Talk about durable! She's rolling over, doing some small babbling, loves to drink from a straw or open lid cup, plays with her toys, and her smile can light up any room. She still cant sit unattended, she enjoys standing but cant do that unattended either, she cant eat textured foods, has a hard time drinking juices but she can eventually get it down. This morning, while looking at a Pampers coupon we had gotten in the mail yesterday, my husband asked if seeing things like that make me sad. On the cover there is this mother laying in a field of flowers with her toddler gentling touching her face with the palms of her hands. My answer was a simply "NO." I have accepted this life. I accept Sophia for who and what she is. If we get caught in that realm of saddness then our lives will not move on. We would simply exist in life and not live this life. Sophia reaches out and touches my face on a daily basis. Her soft and gentle touch is something I will never take for granted. I try not to think about the what if's and the what could have been's because that is not reality. My reality is Cornelia De Lange Syndrome. It's doctor appointments, therapy sessions, medications, procedures and surgeries. It's really high highs and very low lows. This diagnosis does not make Sophia who she is. It is a part of who she is but Sophia is Sophia. She is the little girl that refuses to sleep in a crib, bed, or bassinet. She is the girl that must sleep in her swing all night, everynight. Sophia is the girl who communicates with her eyes and simple noises instead of words. She is the girl that loves to play at the park and be outside. She dances with her chicken elmo, smiles back when she see's a smile, tries to walk, and loves to cuddle. She must at all times see someone or she pitches a fit. She will put her head on your shoulder and pat you on the chest. Sophia loves her brothers and really enjoys playing with them. Sophia is Sophia. Sophia is not CdLS, she has CdLS.

Blessings

It's been awhile since I've last blogged. Sophia had surgery, the boys had things to do and then Sophia got sick. Basically life caught up with me and kept me busy. Although I'm extremely tired tonight I had to put down my thoughts and feelings so here goes....

The other day I was talking with my sister and she made a comment about how God knew long before I was even thought of that Sophia would be in my life. God had all this planned and set out exactly how he wanted it to go. My older sister, who as a child I thought she was the wisest person I knew, told me what I had heard many times before. Still when she said this it made me think of it in a different light. She said, "God will not give you more than you can handle. He knows how strong you are and he knows you can handle everything with Sophia. He chose you to be her mom." My sister along with the countless others who have said this to me are completely right BUT they've looked past one detail. God, my God, must have Faith in me. He must have faith in me to allow me to care for one of his most special and fragile children. He could have chosen so many others to be her mommy but he chose me. Like the blue prints of a house only God knows the blue prints of my life and by his grace I was given Sophia. There were times during my pregnancy when I was very depressed. I would cry asking God to please help me understand. It wasn't in his plan to give me the answer then but he's given it to me now. Sophia is a blessing. I mean a true hand picked blessing that only a few of us have been so blessed to know. So many parents take the small things with their children for granted. I can be honest and say I took things for granted with my boys. Then Sophia came along and I've learned to appreciate all the small things. What an amazing blessing to be given. To take each moment and live in that moment with your children. To appreciate every smile, every laughter, every tear. To applaud and celebrate every milestone reached and enjoy being able to doctor each and every skinned knee.

If you have the chance make mud pies with your kids. Dance and play in the rain. Be silly and pillow fight. Don't sweat the small stuff but enjoy it.

Happy Day

It's amazing how one day you can feel at the bottom of the world and then the next your flying above the clouds. How one day you wake up and realize you've been neglecting yourself while trying to learn to balance life and all it's unexpected glories. Today has been a good day. I mean a really good day. I woke up feeling great. Went to Sophia's follow up with her cardiologist and received wonderful news. The cath procedure worked better than we suspected and Sophia's gradiant has gone all the way down to 30! Immediately after the procedure her gradiant was 70 and in one week it's gone to 30 so what more can I ask for?! Life has a funny way of knocking you down only to pick you right back up again. I felt stress immediately beginning to melt off my shoulders after the cardiologist came in. Now instead of monthly visits we go every 3 months. Scratch one doctor off the monthly visitation list!

Today I also went tanning for the first time in about 2 years. Tanning although bad for your skin, I know, is something I've always enjoyed doing. I've realized lately that I have been neglecting myself since we found out about Sophia's differences last August. To finally go and do something thats me, something that I enjoy and something that makes me feel better about myself was just wonderful. I think our family is finally finding our groove in our new life. We've found what works for us and although we're still learning we're working it all out.

The Fright of my Life

I havent had the chance to blog about our weekend experience at the childrens hospital. Whats usually handled as a day procedure ended up being several days with Sophia. Although this was our first experience putting her under anesthesia. Sophia went in for an endoscopy, cath procedure on her pulmonary valve stenosis and ear tube placement. Everything started out being delayed by 5 hours so that should have been my big red flag that things were not about to play out as I had expected. Each doctor came out to consult with us after they finished their part. Each doctor said things went great and Sophia seemed to be doing wonderfully. Then as we are waiting to be paged to go see her in post op we see the anesthesiologist walking into the waiting room. UH OH! She tells us that she tried to extubate Sophia and that Sophia took one breath but after that she didnt breath on her own again. Sophia had to be reintubated. She goes on to tell us that Sophia is on a ventilator that's breathing for her and she's being taken to ICU. Once she's stabilized in ICU we'll be allowed to go up and see her.

I have never in my life felt so empty inside. The fear of losing her came over me. Although I was terrified of that thought I couldnt cry. I was so incredibly sad and I felt this terrible pain deep inside of me but the tears didnt flow. Is something wrong with me? I know all about the dangers of general anesthesia and reasons like this is exactly why people have that fear. My mind knew all the possibilities but my heart wouldnt allow it. My heart wouldnt allow me to process the fact that we were so close to losing her. That very day, that very moment. Was I laughing in the waiting room as she took that last breath? Was I eating a snack or talking on the phone.... Have I taken a single moment with her for granted? It seemed like it took forever to finally see her. When I walked into the ICU room she looked so fragile. It was hard to see her with all those tubes and cords running from her tiny body. There's nothing I wouldnt have given to trade places with her. As I stood by her bedside at some point during the night Sophia started to wake up and thrash about. As hard as it was to see her that way I was so thankful for it! She was waking up. She was moving and she was fighting. She was fighting then as she has always fought. Early Saturday morning she was taken off the ventilator and I was able to hold her again. I cuddled her so tightly in my arms and just sang and talked with her. I didnt care who walked in that room I continued to sing to my sweet girl. I wanted her to know that not for a second did I leave her side. I was right there with her and by her side I'll always be.

As the hours passed Sophia slowly got better. Sunday she was given a steroid to help with her throat and the inflammation caused by all the tubes. Then Monday morning she was ready to go. My little fighter was once again on her way home after almost giving me a heart attack.

What a ride

Cornelia De Lange Syndrome.... Thats the diagnosis we were given just a few hours after Sophia was born. For months during my pregnancy we searched the internet and met several times with a genetics counselor in hopes of putting a name to this frightening dream we had fallen into. I remember the call I received from my husband as I was laying in my hospital bed recovering from the c-section. The fright and worry in his voice as he told me the diagnosis and read from the informational page he was given from the NICU team of doctors. We were so glad Sophia was here, although prematurely, and was thriving and doing well in the NICU. That happiness was soon overcome by more fear and worry as we learned more and more about CDLS and the long road ahead of us. Everything we read didnt provide us with much hope for her future. Everything we read lead us further and further into depression. I kept looking and looking in hope of finding something, just one article, that would disagree with all the literature saying that every child with CDLS is developmentally delayed. My beauiful sweet Sophia, just a few hours old at this time, was already being labeled and the outlook wasnt good.



Sophia spent two LOOOOONNNNGGG months in the NICU. We were there for Thanksgiving, Christmas, and New Years. Finally at the end of January 2010 Sophia was ready to go home. Our NICU experience was wonderful and we were fortunate to have the team of nurses and doctors we had. Our neonatologist had experience with CDLS which was helpful and reassuring during the hard times. While in the NICU it was hard to balance life with our other kids. Still, if Sophia made any noise or movement that scared us the nurses were right there to lead the way. When we finally went home that safety net was gone and for awhile life was more stressful than I ever could have imagined. There was this constant pressure on us for Sophia to gain weight and yet she was constantly vomiting and had terrible reflux. Each time she would vomit I felt more and more like I was being pulled into a black hole. The fear of facing life with her having a g-tube seemed inevitable. The huge pile of laundry that seemed to pile up faster than we could put it away. The constant on the go to doctors appointments and in home therapies. All while trying to balance breast feeding and spending time with my older two kids. The weight of the world, or at least our immediate family, was on my shoulders. Sophia thriving or failure to do so was based on my care and no longer those wonderful NICU nurses. Two steps forward, ten steps back.....



Eventually, as she grew bigger, we were able to get the vomiting and reflux under control. After we went a few days with no episodes I was finally able to breath again. Occasionally Sophia does vomit and reflux but I've learned how to cope and deal with it. No longer do I feel that I've done something wrong and could have prevented it. My child with CDLS will vomit from time to time. She will NOT gain weight fast no matter what I do and as long as she is gaining then thats what matters at the end of the day. She eats perfectly by mouth and putting in a g-tube will not speed up the weight gain process so I'll stand my ground and refuse that plan of treatment.



We have been so fortunate to meet other families and kids with CDLS. Sophia is now 7 months old and tiny but she's thriving. We had the opportunity to attend the CDLS conference in Dallas and Wow is the only word I can think of to describe the experience. Every person that attended was just so warm and kind. I have met friends for life and we are connected by this wonderful CDLS journey. I believe in order to successfully parent a child with disabilities you have to be an amazing person. You have to be able to find humor in those darkest of days, and believe me, we have plenty of them.



I never thought I would have a child with disabilities. I never thought I would have a child with physical differences from most of the rest of the world, I feared it. Although I feared it then, I can not imagine my life any other way. Sophia's birth was one of the best things to ever happen to me. So many wonderful people have come into my life because of her. When she smiles at me it lets me know I've done something right. Our CDLS journey has just begun and we've hit some major bumps along the road but wow, what a ride!