I've had good intentions to blog lately and have felt the need to share but after Lily goes to bed, its hard to find the energy for anything else but sitting in the chair. However, when I started this blog about our journey to share with you all, I wanted to be as real as possible and talk about the reality of sma---the good, bad, and ugly. It's hard for me to be vulnerable and share my heart about things that hurt me to my core, but I want to be honest about all parts of our journey and share about hard days as well. The last few weeks have been hard. I’m not exactly sure why but it could be a) being pregnant and tired, (b) taking care of my 2 year old sassy toddler that needs constant care and supervision, (c) awful allergies all day long despite allergy shots and meds, (d) the start of harvest and dad getting home later, (d) thinking about having two children and how....I'm going to take care of them :-) or (e) or all of the above.
We have also started the process of looking for a nurse. Ugh. As my fingers type that, I just feel my stomach sinking. It may seem crazy to some--like why wouldn't you take the help if you can get it. BUT I have cared for my own daughter for 2 plus years and I have done all of her daily cares, all her treatments, all her meds, feedings, etc. It's very very hard to think of letting someone else do that. It’s letting go. Letting go of the fact that I know that I can’t do it all on my own, especially with another one on the way. Lily’s care is 24/7 and since she requires frequent suctioning and constant monitoring, unless she is napping and has her bipap on, (but even then) there is no break. I need to be close at all times so unless I’m really out of the house, its not a break.
Nursing is not something I really want to do but there's been many days (more days lately) where Ive been tired, weary and worn and I know that it would be nice to have help or an extra set of hands during the day. Just hard to go through with it. Its hard trusting someone to take care of your child especially when there are special needs, many needs. I won’t ever have to leave if I don’t want, but it would allow me to get other things done at home like cleaning, laundry, make phone calls, setting up appts, ordering supplies, doing things that are just hard to get done while caring for Lily. Also, I could just be mom. I could still do her cares but I would’t have to do all of them and be “nurse” too. Most likely it would take me a long time to feel comfortable leaving Lily but I wouldn’t have to. I suppose the reason I struggle so much is the letting go part of it. Its hard to let go of control -to let go knowing it's something you need to do even when you don’t want to. It pushes you out of your comfort zone. I feel like since Lily's diagnosis, I am continually being pushed out of my comfort zone, forced to let go. Letting go of what expectations were and what you thought life would be and instead taking things one day at a time --for what they are and accepting your new reality.
Some days I don’t feel the loss or limitations of sma, I don’t see it as clearly as other days. Other days I feel such joy and pain within minutes of each other. It feels like living in two worlds at the same time, riding two rails of life at the same time. Trying to enjoy and cherish the moments that you have, at the same time knowing that in an instant things could change. Lately, it has been more of a struggle and the limitations of sma have been more visible. It may be due to the tiredness and all mentioned above but a lot it comes down to what my expectations for Lily were and grieving the loss of those expectations, the milestones she has missed, and accepting what she is physically able to do. I know she is so intelligent and growing more independent by the day, wanting to do things on her own without moms help. That is great because its normal and typical. But its also a reminder that I have to help her with everything and her body doesn’t allow her what she wants to do. She can’t move without me, can’t eat without me, can’t itch her face, wipe her tears, or tell me why shes upset when shes crying. Its heartbreaking and it tears at my soul but that’s not a place I can stay for long. But easier said than done-some days it feels so defeating. Yet, I have to work on shifting my focus to what she can do and her personality, her laugh, her smile, her sassiness and that she is here with us today. She is here. Too many parents have had to experience the loss of their child due to sma. Thankfully there is great potential that someday, drugs other children with SMA are receiving through clinical trials, will be available to Lily and other children, hopefully sooner than later But it still doesn’t take away from all the families and parents that feel the void of missing and grieving over someone they love that is gone.
We feel that Lily is a very strong girl and strong for a type 1 and we want to help her conserve any muscle tone she has so hopefully one day she can sit upright and maybe by the grace of God even stand. It is happening. Other kids are doing it. It just has to become accessible for All kiddoes.
We have long days and some days are really hard. Just trying to get through the day is a challenge. But then I have these moments with her where I’m reminded of the gift of her life that we've been given. This sweet little girl with the most adorable little giggle and smile. I was able to hold her in the recliner for a little bit this evening and snuggle her while we watched some cartoons . Those moments make the limitations of SMA disappear and make the anger and frustration I feel towards SMA go away. Its just me and my girl sitting and watching cartoons. And I will cherish that time and those snuggles for as long as I am able to. Those moments help me to focus on what is important.
When I was on facebook earlier, I stumbled across a post from Proverbs 31 Ministries and I think whoever was writing was addressing me specifically. They were talking about God stretching our faith and taking us out of our comfort zones, how we are called to trust him and obey him during difficult seasons of life. I feel like we are in a difficult season of life and have been for awhile. And maybe it will always feel that way as we walk the journey of SMA. But especially as we go forth and try to find a nurse that is a good fit for our family, (despite much hesitation and stretching), I am reminded that I’m not alone and every day that passes, we are getting through with His strength and not our own. I really like the quote that Tracie Miles from Proverb 31 Ministries shared “God will never stretch us beyond what we are capable of in his strength.” Sometimes I wonder; I feel like I have been stretched and pulled and frayed beyond what I thought I could stand----but at the end of the day. I can say I made it through, I'm still standing. And I’ve got some pretty amazing blessings in my life to be grateful about.
1) Pray for HEALTH ---especially for Lily as we enter cold-flu season! A cold for her is detrimental to her health so pray that germs and illness stay away!
2) Pray that drug treatments children are receiving through clinical trials soon become available to us and kiddoes just like Lily
3) Pray that we are able to find a nurse that not only takes great care of our Lily girl, but enjoys spending time with her and becomes a great fit for our family
4) Pray for a safe and successful harvest for Levi, my dad, my father-in-law, and all those harvesting right now!
5) Pray for health for baby #2