Mother's Day Connection

[caption id="attachment_7270" align="alignright" width="300"] My first Mother's Day- 2006[/caption]This past weekend I celebrated my 9th Mother's Day. There is nothing I wanted more in this world than to be a mother and there is nothing I cherish more than my daughter, but Mother's Day can be a tad bitter sweet.

I have learned how to process all of my feelings like jealousy, anger and sadness when it comes to the life I expected. It took many years, but with lots of help and support I was able to come to peace with my "new normal". I still think about the things my family can't do, the things we miss out on, especially the things my daughter will never get to experience. I have learned to be happy for my friends and family that are living the lives I planned. I have learned to focus on what we DO have and what we CAN do and to celebrate EVERYTHING!

Holidays are still tough, and I think they always will be. The traditions, the pageantry, all of it is just another reminder that I'm not like my friends and family, at least not the ones I have known all my life. I am however, just like my new(ish) friends and family. I share a bond with my new community that makes us feel like we are family- sisters by circumstance.

[caption id="attachment_7279" align="alignleft" width="250"] "Snuggle Cam" Mother's Day 2015[/caption]This community, my new family, it's you- all of you! I logged on to facebook on Sunday, as I do everyday, and I started to feel a little sad as I scrolled through my newsfeed. I saw so many post of my friends with their kids out doing special things for Mother's Day. I read each post and felt happy that they were having special days, but also a little sad. However, as I continued to scroll through my feed I saw other posts that made me feel connected to the rest of the world. A connection we all long for- a way to feel like we ARE normal. Some of you, my MOM friends, were posting pics of your miracles snuggled up on your laps, tubes connected, sitting in awkward positions in order to support their needs and your faces filled with so much love. You all were doing exactly what I was doing. Snuggles with my daughter are my favorite part of the day. On some days we snuggle almost the entire time. For Mother's Day she was in a good mood and we snuggled on the couch watching chick flix and having our girl talk (she is non-verbal, but we still have our chats). It was a great day, I too was filled with so much love and I was happy. I don't know why I let the pictures of moms playing in the park with their kids make me feel like my Mother's Day was any less special. Truth be told, I think mine was MORE special. I thank all of you for reminding me of that.

I hope that all of you had a wonderful Mother's Day, and that you all got some snuggle time with your miracles.

Would I change a thing??

Some recent events that I have read or heard about got me really thinking.. If I knew what I knew now and had a choice to live with what is my now normal with my special needs child or choose to not have them at all.. Would I change a thing?? Would you??

If someone sat you down with a television in front of you and first you were able to see your life as it is now.. life with your special needs child. All the appointments, all the worry, all the unknown. Every tear, every angry at the world moment in tears and fear, angry at how unfair this is for your child and your family. Every hurt, knowing how hard it is for your child to do things that come so easily and taken for granted by others. Every stare, every rude comment, every pity look.. Every missed dinner, night out time with friends because you couldn’t leave your child or wouldn’t. Every missed moment with your spouse or missed vacations because your special needs child needed you. Financial burdens because of medications, equipment, gas to get to and from numerous appointments and therapies. Every set back. Every moment your other children miss out on with you because your special needs kiddo needs more attention and help. Constantly comparing, noticing the differences between your child and others their age and bursting into tears at any given moment because it doesn’t seem fair. But also, every cuddle, every kiss and hug. Every over the top celebration for the little things that are BIG things. Every smile. Oh that precious smile. Every sweet little moment of quiet when you watch your sleeping angel knowing they are the biggest blessing. Seeing the hearts of those you love soften and change for the better because of your child. Seeing your son or daughter with special needs LIGHT UP when they see their siblings, when they see you. Those moments when your other children sit down and cuddle with or hug or sing to or play with your special needs kiddo, seeing the love they have for them. Seeing that compassion your children have that many don’t get the opportunity to learn. Every therapist, doctor, teacher, receptionist, fellow special needs parents that you have met during this journey. Everyone of them that have talked with you, sat quiet and let you vent. Every tear shared with them and new friendships you made with them. Every moment you felt the love and support of life long friends and the care and compassion you see in them walking this journey with you, no matter how near or far they are. Every moment you spent with your spouse crying, holding each other, reassuring each other everything will be ok, and feeling that much closer to each other because of it. A bond no one can break.

The next thing you view on that screen is your life had you chose not to have had your special needs child. You see your spouse and your other children. Life is easy, well easier. Money isn’t as much of a struggle. You have a savings. You take vacations, go out to dinner. You are able to make more nights out with your friends and spouse. But life gets busy still. Soccer games, school functions. Life is “normal”..

What would you choose… a Life that is “ Normal”, or a life that is with a tougher journey?? I know some may say if they could choose they think it would be better for everyone to choose the normal. Their child wouldn’t have to grow up struggling, fighting, being hurt, treated unfair and as a parent you wouldn’t have to deal with so much hurt, sadness, anger, exhaustion.

But for me, I would choose all over again for the life I have now. I don’t believe I should have the choice, its not my choice its God’s and I believe my daughter was designed and made special for our family, to CHANGE us.. but if I had a choice I would choose our normal, our life with our special needs daughter. My daughter is a BLESSING!.. yes it makes me sad she has to struggle and work so hard to do little things. Yes it makes me angry that others put limits on her or have pity for her and for my family. Yes I am exhausted ALL THE TIME! Yes I miss out on so many get togethers with my friends and it tears me apart.. I miss them so much and hope they know I love them and want to be there. Yes money is tight. Yes my boys deserve so much more of my time and attention..BUT I am so thankful for every moment.. Every exhausting night. I am so thankful for every moment that has brought tears but also brought my husband and I closer together and made us stronger, oh so much stronger. As a couple and as individuals.. I wouldn’t trade a single smile from my baby girls face. I enjoy those moments I get to celebrate with my daughter and family and friends for little things my girl accomplishes. I enjoy sharing about my daughter and my boys with my family and friends and hearing all the amazing things their kiddos are doing.. I Love being able to share a little about my daughter with others, even strangers when they ask and then learning about someone “special” in their life.. I wouldn’t trade a single second.. Every moment with each of my children is a blessing.. I wouldn’t change it. I believe God allows some children to be born special to allow others to learn compassion, care, love and a deeper understanding of how much God loves us. My daughter I know is so much stronger and determined and loving then anyone I know because of her journey and struggles. My boys have developed a deeper love for their sister because of their journey with her. My husband and I are closer and more in love then we have ever been. This life is a journey we would choose over and over again.. Yes we wish sometimes things were easier for her.. she deserves that. We want her to be able to do things like walk and talk and sing.. but its not up to us or in our timing.. God has a plan.. I would keep every bad day, every good day.. every moment just to see that little smile and be given one of her slobbery wet kisses

What would you choose?

This post was written by guest blogger, Leanne Dillingham.

Leanne is MOM to Alyssa. Alyssa was due Jan of 2011. After issues with preterm labor and a very scary
emergency C-section, Alyssa was born on November 18th 2010, 33 weeks pregnant. Alyssa spent her first month in the NICU and had multiple issues there. When she was finally able to come home a couple weeks before Christmas, we thought the hard part was over. As time went on we noticed different things with Alyssa. She was progressing with development but very slowly. She didn't crawl till well after 2. She had genetic testing done and we found out that she has a genetic mutation that they don't have anyone else on file that has it yet. She is developmentally delayed and has microcephaly. She has seen many different doctors and therapists, and keeps us very busy. She is 4 now and she doesn't walk or really talk yet but we have faith one day she will. We are a family of faith and believe that God blessed us with this little miracle and she has taught us so much. She is such a blessing to our family and we are so thankful to be on this journey with her. She adores her big brothers and they adore her.. Life is good. Not always easy but good.

My New Normal

The first 2 years after the birth of my daughter were extremely dark for me. I had moments of joy, but most of the time I was hurt, angry and jealous. I would see a mom and daughter in the store shopping together and start to cry because I could not take my daughter to the store with me. I would hear a mom complaining that her child is not walking yet and he/she is already 14 months. I would be filled with anger at this mom, how could she complain when my child will likely never walk. I would be hurt when my friends and family would leave me out of things since they knew I could not leave my daughter's side. Rather than letting me decline an invitation, no invitation was offered. I would hurt for my daughter. I wanted to give her the full life that I had spent 9 months imagining while I was pregnant. I would give up my ability to walk, talk, eat, breath if I could give it to her instead. She was so innocent and so pure, and yet she was being punished for no reason. I was angry at doctors, at God, at myself, I was angry and hurt all the time.

Around her second birthday we moved back to my hometown where I had family and more friends that I could lean on. We also finally got a regular scheduled nurse to start helping out. Eventually I was able to get out and do things for me. The darkness was starting to lift as I found bits of my old self shining through. Anytime I would tell my daughter's story (our story) it was as if I was living it all over again. I could hear the monitors in the NICU beeping, I could smell the alcohol wipes prepping for blood draws, I could taste the watered down fruit juice that I drank to try to produce more milk for pumping, I could hear the suction machines, the breathing of the ventilators, it was as if I were still sitting in the uncomfortable rocker next to her isolette in bay 8. I felt like I was going crazy. All of my friends and family wanted to hear the story, but I was not able to tell it without completely breaking down.

I somehow found my way to a local organization, Texas Parent to Parent. In my irrational state, I signed up to be a mentor to other moms. I was not qualified for this role, but I am so glad that I went to the training. As we went around the room each mom told her story and how they found their way to the group. I was one of the last to go. I sat and listened to each story and felt envious of each mom. I would give anything to have their problems. Their children were medically involved, but they could smile, they could breath, many could even walk and talk. Then it was my turn to share. As I had done a thousand times before, I tried to tell my story. I was a mess before I even got half way through. I could not hold back the tears and felt like a complete fool breaking down in front of everyone. I was here to be a mentor and as it turned out, I NEEDED a mentor.

At the Texas Parent to Parent training I learned about the Stages of Adaptation. I learned that my feelings of jealousy, anger, etc were all normal. I learned that what I needed to do was to grieve. Grieving did not make any sense at first. Why would I grieve, my child is alive? I realized with the help of these new mentors in my life that I am not grieving my living child, I need to grieve the life that I had imagined. The life I spent picturing for 9 months (or really for my entire childhood). The life I envisioned for my daughter, and for me as a mom, was very real. And that life is gone and needs to be grieved. My obsession with getting pregnant again, even though I knew I could not physically have another baby nor did I have the time, resources, etc for another baby, was normal. That was my subconscious way of trying to recreate the birth and early fantasies I had lost. Once I knew why I was feeling the way that I was, and I knew I was not crazy but just a MOM, it helped me a lot.

A year or so later I realized that there were reasons all of the memories were so vivid each time I told my story. I was suffering from PTSD. Just like the original idea of grief, PTSD also seemed completely out of place. PTSD was for soldiers in war, not for moms. As I learned more about PTSD I realized that it was in fact what I had. Many parents that go through a trauma like I had with their child (it does not have to be at birth- but often is) will be so scarred from that trauma that PTSD is very common. The same neuro receptors and chemicals are involved regardless of the nature of the trauma. I as a mom watching my child go through all that she as gone through, and going through many medical issues myself was traumatized. Much like a soldier that sees unimaginable sights at war, I saw unimaginable things in the NICU.

Many of us may need to see a psychologist or psychologist to help work through our feelings. Many of us may need chemical interventions to help get through this process as well (I do not mean to self medicate- I am referring to chemical interventions prescribed by and monitored by a licensed medical professional). There are some great resources to help find a good therapists in your area, and there are many that specialize in treating caregivers. Not only do they treat for PTSD, depression, anxiety, and the other things we often expect with extreme parenting, but they also treat things such as caregiver burnout, and grief at the many different stages. There is sometimes a stigma attached to seeing medical care for physiological issues, but if you need this care PLEASE call someone. There is no shame, and asking for help does not make you a bad parent.

Once I was able to work through my feelings and better understand what I was actually feeling I was able to get to a much better, much brighter place. I eventually even made it to the point where I can now be an effective mentor parent. I still have bad moments, days, weeks, but I am able to get through these dark places and back to the light much quicker now. It takes a lot of work and I rely heavily on my amazing support team (especially my husband). I have a new life now- a new normal. It's easy to get caught up in the things I wanted to do or can't do. When I start to go down this road sometimes I allow myself a little time to be sad, but ultimately I remind myself that each day with my daughter is a gift and regardless of what can't be done, there are SOOOO many things that CAN. We have learned to not sweat the little things; we have learned to live each day to the fullest; we have learned to celebrate EVERYTHING, and we have learned to ask for help. If you had asked me 10 years ago what I expected to be doing today I would never have guessed that this would be my life. Of course I would still trade everything if I could make my daughter healthy and to give her an easy life. That being said though, I am happy, I have found my joy and her name is Casey. Everything I do, I do for her.



I expect many of you reading this can relate to the feelings I describe. Please know that you are not alone. We are all in this together. Seek help, join support groups (like Mommies of Miracles) and allow yourself time to grieve. It's an amazing journey and rewarding in so many ways. There will be dark days, but you can do this!