Christmastime---such a wonderful time of year. A joyful time to share with family. A time of giving, a time of sharing, and for being thankful for all the blessings in life. A time to get out with family and see the holiday lights, listen to jolly holiday music in the stores while Christmas shopping, and sipping hot cocoa at home while wrapping Christmas presents and watching Christmas classics. There are so many things I love about this season. But this time of year is also a time that brings a lot of pain and sadness. Many are grieving over the loss of loved ones and feeling the heartache and emptiness of missing friends and family members. So much heartache that seems to be exemplified at this time of year. My heart especially aches and goes out to those families that are suffering the loss of a child right now, especially those families that have lost their angels to SMA, several just recently. The fear of losing a child is something all parents experience but for families that have children with SMA it is more of a daily fear that accompanies the diagnosis of SMA. Things can change so quickly especially when illness strikes, and fear becomes reality. There are so many families hurting right now and my heart hurts along with them; I don't know what they are going through, but I can only imagine.
I feel that grief in general is part of the journey of having a child with SMA. Unfortunately, during this joyous season I’ve been feeling more of it lately too. The brokenness of what expectations were and what reality is, the hope that is getting stretched too thin----waiting for a cure, waiting for treatment. There are meds out there that are helping children with type 1 thrive (sit up, stand, and even eat orally)---amazing things that children with type 1 are not expected to do. Its heartbreaking to know its out there and that while some children that are lucky enough to get into trials and get access to it, other children are weakening, dying, and losing the battle to SMA. Yet, we can't lose hope or can't give up---we have to hold on to the hope that someday Lily and her friends will have access to this treatment and do everything we can to keep her healthy and strong so she thrives even more when she gets it.
It's not always easy, but we have to focus on the fact that she is a strong type 1 and grateful for all the things she is able to do, like smile, laugh, scowl, and make so many facial expressions, even sing (Adele's "Hello" is one of her favs.)
But some days the limitations of SMA are more visible and harder to distract from ---so sad and so frustrating. Maybe it’s the pregnancy hormones, increased tiredness, and business of Christmas season, AND starting nursing care to top it off all –but lately SMA seems to be a little more heartbreaking. Some days I just get so frustrated and sad that she can’t do typical two-year-old things. I don’t like to use the word typical or normal because I feel like Lily is a normal two year old----she is so smart and loves to do things other two year olds do, like color and play with dolls or stickers, watch movies and play games; however, her body just doesn’t allow her to do physical things that other kiddoes her age are doing---sit and play with toys, run, walk, scream, throw tantrums. Don’t get me wrong…she has her own way of throwing tantrums but the things that I grieve most about her diagnosis and SMA is that she can’t throw her arms around me and say I love you, she can’t run into my arms crying and I can’t console her in the way that every fiber of my being wants. I can’t hold her upright or against my chest and let her fall asleep on me when she wakes up at 3 am crying and upset. I can’t just lay with her in her bed because first of all, she’s in a crib and I’m largely pregnant, but she has bipap and her pulse ox and her feeding tubes and cords that make it difficult to do those things. Not impossible but very hard. Especially with our lack of space and small area we’re living in.
However, dwelling on the limitations of SMA is not something that will change or better our situation, so I try not to stay in that place for long. But that being said, some days are just hard. I crave normalcy. I crave the days where I feel like I’m just constantly picking up messes that my two year old has made. I crave the days where my child is crying and screaming because she doesn’t get her way or she doesn’t want to come inside from playing. I crave the moments where she looks at me with chocolate all over her face and grins and I shake my head at her because she climbed on the counter and stole cookies. I crave to hear her talk to me and tell me everything going on inside of that smart little mind of hers. I crave, I crave, I crave just to hear her say "I love you mommy." I crave the moments that many take for granted or don’t give a second thought. There isn’t a day that goes by that I don’t wish for and pray for and hope for a little more normalcy. But on the other side, as I’ve heard other SMA moms say, if our life was normal-if our life was easier, then there would be a void---there would be an emptiness because that would mean that she wouldn’t be here with us. And every moment with her here (despite the challenges and sadness and limitations of SMA) could not compare to the sadness I would feel if she were not here. I would rather endure endless troubling, challenging days facing SMA than have one minute without her here. And during these times when I struggle and grieve over the things that are lost, the things that her body doesn’t allow her to do, I try to remember and hold on to the fact that she is HERE. A beautiful girl with a beautiful smile and so much personality. And though she has limitations, she is capable of so much. She is full of joy and has taught us the gift of love and she is daily reminding us of the true meaning of Christmas------the love of a Saviour that knows no limitations, sees no limitations, and loves and accepts us for who we are. That is a big Christmas blessing to be thankful for!!
If you would like to pray for Lily and our family, here are some specific prayer requests!
1) Continued health throughout the winter and flu season
2) Available access to needed treatments and drugs for Lily and all her friends with SMA
3) Strength, patience, open minds as we adjust to having a nurse in our home helping us care for Lily as we anticipate Baby boys arrival in a few months
4) A healthy baby boy and smooth delivery
5) Healthy for family and friends
6) Peace and comfort for Levi's grandfather (Victor) and as he recently lost his wife
7) Being able to focus on what Christmas is truly about and the many blessings we do have -not the limitations or challenges we face