Not always the strong one.

For most of the posts about Sawyer and his Craniosynostosis I have been upbeat and positive. I have learned how strong I am through this tiny child. And have been welcomed into a community of other mom’s who give me strength through their stories. And I have been brought to tears of the strength of one mom in particular. {If you wish to read her story you can find it here. I do recommend going back and reading it from the beginning. She is an incredible woman.} Be warned her journey will bring you to tears many times. And as most days I can put this into the far back corners of my mind, some days are just not that fortunate.

After our last doctors appointment {April 9} we were told CTscan and surgery would be scheduled asap, and everything would be over by May 9th at the latest. I wish they would understand that when you give dates to a stressed and optimistic mom of a 6 month old, she takes them as that. May 9th has come and gone. We finally got the CATscan done late due to poor communication with our insurance company and doctors. And then we waited 4 days. No call, no dates. I called them today to get my answers myself.

I cannot tell you what a frustration it is when my phone call seems to be of no importance to anyone. I was transferred to 4 different women, each not knowing why I had been transferred, and having to explain it over again. By the 4th time, my voice was cracking with tears. I was told I could have a consult appointment on May 21. When I asked to have it sooner I was told I could have one this Thursday if I could bring my CTscan results in with me. But I explained that I indeed did not have them and that they were the ones who had the results. She told me no and transfered me again. I finally got someone to look at his actual file and tell me what was going on. Apparently they have been trying to schedule his surgery {but didn’t think I needed a phone call about it.} The problem is that my Neurosurgeon is going on vacation. We have been moved to end of June. Still without a date.

Please don’t misunderstand me. I understand that everyone deserves a vacation. I am just extremely frustrated with not being told anything, with waiting since February for this surgery, with the stress of dealing with all of this. I feel continually like our doctors do not see us on a human level. They do not understand that as first time parents of a 7 month old baby, we might appreciate knowing what is happening. So somedays are not as strong, and today happens to be one of them. Where dealing with 2 dogs at the vet getting multiple shots was miles easier than one phone call to one doctors office. Where I wish I hadn’t phoned and ruined my morning after having a great time with family.

No some of those days, its easier to just curl up and have a good cry. Let your baby have an extra nap, an extra bottle because who cares if his schedule is was off today. Have a couple vents on the phone {thanks dad.} And then have a couple deep breaths, read the blog posts from reflections on a journey and remember: its nothing compared to some. Its crappy, and its not going to change. So deal with it. And then have another cry. Life goes on.

11 thoughts on “Not always the strong one.”

  1. Awe hun you ARE so strong and you are definatly allowed these days! It is crazy how the health system can not have the sensitivity you are looking for! I’m hoping for a quick date and results you guys need!! Co

  2. Alissa keep your head up , I know for a fact that everything will work out cause … Good things happen to good people and you are by far one of the top on that list! Just take each day for what it is and remember how much that little boy loves you regardless if you let a few tears out or not ! If you ever need anything you know where to find me! Xoxox

  3. A good cry can be very therapeutic….you have every right to feel frustrated. This is your child and your life. Thankfully you have reached out – and you will be able to fill your “strength bucket” again – with all the love and support from the people in your life…..

    When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn. ~Harriet Beecher Stowe

    Love Auntie K

  4. Gosh you are one of the strongest people I know! You are so amazing Alissa. You deserve answers and you have every right to want answers. I’m so sorry! You and your family are in my prayers!!! I hope everything gets better! Xoxo

  5. I am keeping you all in my thoughts and prayers Alissa! And I hear you with your frustrations, and even though we may not be able to see it at the time, each moment has a place in the bigger masterpiece of our lives

  6. Oh Alissa 🙁 if I were you I would be having this kind of day EVERY day. You are so tough, that little boy is so lucky to have you guys as parents. Stay strong! <3

  7. Alissa, Chris and I will be on the next plane down when you get the date to help out with whatever you need. You know you’re in our thoughts all the time and say prayers for all of you frequently. Sending BIG HUGS and hopefully you will feel strength. Be strong

  8. Wow! I can’t believe you are still waiting for a date. I would be beyond frustration by now. You are amazing to stay so strong but some days you just need to vent or cry or whatever.
    Hugs to everyone.


    P.S. The cupcakes look fantastic.

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